Mike Nevin

Strangers on a train

“I just wish I could be spontaneous.” This was said by another wheelchair user on the train to Dawlish on Thursday.

He had decided to travel by train, the first time in years. In common with all wheelchair users he was forced to plan ahead. You can’t just leap on a train in a wheelchair. Well, you can’t leap for a start. To begin with there are only two or maximum four wheelchair spaces. Two being the most common, four on the very long trains. When there are four, two are in first class.

Wheelchair spaces double or is it treble use anyway, as pushchair and large luggage areas. Why is there no other space on trains, or buses for that matter for pushchairs or large luggage? Are wheelchairs really just an afterthought? On a train at least you can usually book the wheelchair space. So, you have some right to the space. On a bus you rely on the goodwill of the other passengers to move. No law forces them to move. That’s right, there is no law enforceable about wheelchair spaces. A wheelchair user can be left stranded if an intransigent passenger refuses to move their stuff from a bus or train space. There needs to be a change in the law. Wheelchair users have no option to fold up their chair and sit themselves on their knee as a parent does with a child in a pushchair. Wheelchairs don’t fit down the aisles as luggage does. The wheelchair space is an essential, not a nicety.

One of the many wheelchair space layouts on a train

Back to our trip to Dawlish. Yesterday was the first time I have travelled with a second wheelchair alongside. We do tend to travel at less popular times and have only travelled Taunton to Dawlish. It was an odd experience, two wheelchairs in the two spaces make it tight for turning. I know its supposedly designed for two, but I have a large power wheelchair. Fortunately, the other guy had a smaller push wheelchair. The other wheelchair user was very chatty. What struck me most was his observation that I have heard before and noticed myself. People often think that the fact you are in a wheelchair gives them the right to offer advice. I suppose it’s a natural step on from the help folk offer, people are often very helpful. But advice is a mixed blessing, especially for this chap. He got the same unwanted advice repeatedly:

“why don’t you get a power wheelchair?”

He also got lots of offers to be pushed. As an independent young man, he particularly disliked that. He just wanted to be treated normally. Of course, that’s not going to happen. You can’t be treated normally in a wheelchair; our world is not setup for wheelchairs. Everywhere you go there are steps and narrow doorways. Doors that need holding open, tight corners, toilets that are too small or don’t have hoists etc. In a wheelchair you can’t do housework without a lot of adaptations and help. Kitchens need complete redesigns to be accessible, likewise bathrooms. I understand his desire, but reality is going to fight him. He has the muscular and physical strength to do the things I can’t and is still limited by his surroundings.

For myself I get lots of offers of help, Mary isn’t very tall, so folk can see she struggles operating my chair. I don’t mind that although I find it a surprise when people smile at me, men and women. I don’t mind the women. I guess it’s to be encouraging and positive. The last time this used to happened was many years ago when one of my sons was a baby and I was carrying him on my back. But I guess all the young ladies were smiling at him, not me. It’s just that his head was so close to mine… I wonder if there is a baby just behind my head in the wheelchair these days.

Our trip to Dawlish was to visit my 92-year-old father in law. He has made an amazing recovery after an emergency operation a few weeks ago and a time in ICU. He is an inspiration, how he has pulled round after that. We were out on the sea front walking and wheeling in the unexpected sunshine. What does BBC weather know anyway? On our way to Coryton Cove, it’s one of our favourite jaunts and a place Dad walks to most days. Now the weather has improved, the café at Coryton is open, so we stopped there for a coffee.

I grabbed a table; it was trying to run away. I had a choice of two, one next to a group of French ladies, just drying off from a swim and enjoying a fairly loud chat and even a sing. As we were still recovering from the train ride where just six ladies had impersonated a crowd of several thousand, I was not keen to choose that table. I looked to the other at the far end. It had a mixed group around it, equally loud. The table between the two had people sitting at it. In the end I chose the table near the Gallic ladies. I’ve always enjoyed the odd spattering of French, especially a good song. I have never been able to speak French, my French teacher at school threw her hands up in defeat. I was surprised though as I thought an F in French O level meant fantastic, but apparently it meant fail.

Mary and her Dad were buying the coffees, hence my agonising over the choice of tables. The position I had taken placed the rear of my wheelchair towards a slight step. I kept saying to myself, “don’t forget, do not go backwards.” Fortunately, I didn’t. The coffee was very nice for a paper cup, portable cabin coffee. The wind was light, the sun warm and the company wonderful. We then travelled to the URC Church for lunch.

On route to the Church, we saw the famous Dawlish black swans. They were next to the fountain near the viaduct. I was commenting to Mary on how the wind looked like it was blowing the water from the fountain towards the path, when it hit me, the water that is. Mary decided to stop a moment and enjoy looking at the swans. Not in anyway related to me getting a light shower. How refreshing on a hot day to get a light splash of fountain water, is what I wasn’t thinking as I asked Mary to move on.

Sausage and mash, is there anything better? Yes, sausage and mash without broccoli and cabbage! I couldn’t believe it, I ordered sausage and mash at the URC Church café and expected either onion gravy with peas or baked beans. But not gravy, carrots, broccoli, and cabbage. What is happening to the world? I know there are some serious issues, but I didn’t know it had got this bad. Still at least I could leave the cabbage and broccoli. The URC Church café do a main, pudding and drink for £5, seems good value. It’s also a nice big space for my wheelchair and has a ramp access. They let me have a cheese scone as my pudding as I don’t eat sweet stuff. It’s a choice I made a few months ago. The easiest thing to do when you are mobility limited is to eat. The easiest things to eat are sweet things. I can eat a packet of biscuits, or a bar of chocolate at one go. So, if I don’t have those things at all, it stops me gaining weight. That way I won’t end up needing an extra-large wheelchair or bed. Doesn’t stop me fancying sweet stuff, but I can just about keep off them.

After lunch we had a short time to visit Dads flat before our train home. Dad’s flat is a tight fit for my wheelchair, but just about possible. I was able to sort out his laptop for him. Nothing major, such things would be beyond me now. Just checking why the internet had lost connection. Then it was time to head to the station, the required twenty minutes before the train. You can’t arrive last minute when you have assisted travel.

The sun was really beating down on our trip to the station and on the platform. If you don’t know Dawlish station it overlooks the sea. In a storm the sea overflows the station. We looked out at the flat, glistening ocean. A beautiful end to a very enjoyable day.

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How the station looked when we were there

This is what can happen to Dawlish Station in a storm

A fragrant offering

For Father’s Day, no don’t panic, it isn’t until 16^th June. Mary is planning on buying me some aftershave. No, let’s be posh, eau de toilette. No, I’m not posh, some smelly stuff to slap on my chops. In order to choose the right one as a surprise, well maybe not such a surprise, Mary asked the staff at Superdrug. That’s right we use only the highest-class shops. She asked them to spray samples of a few possible scents on cards. These cards came home into my bedroom, come lounge, come everything room (see my blog “Bedroom, dining room, lounge, toilet”) where I smelt them to see which I liked. Having selected three, we visited the shop to have those three sprayed onto my skin. We then travelled on to the Cleve Spa. I don’t know what the staff thought when serving me coffee. Probably something like:

“Wow! Mike smells amazing.”

Or possibly more likely:

“Why does it suddenly smell like a Turkish boudoir in here?”

Either way the coffee shop certainly smelt very different around where I sat. The three scents wafted around on the warm air. I was sitting in the conservatory and the door was open. A few people said hello, I’d like to think it’s because of the scent. But they were probably just friendly.

While at the Spa Mary and I were trying to decide which of the three scents was best. One problem, we both forgot where they had sprayed them. Was it inside or outside my arms and the back of which Hand? We must have looked very funny taking turns sniffing my arms and hands. At one point Mary inhaled deeply then said, “no, that was just sweat.”

On our return home, it being a warm day and the scented cards being left in my room, we were hit by a wall of scent. I am very curious what my carers tomorrow will say. I’ve been in this room for several hours and the smell is still overpowering. Walking in fresh I expect they will either be knocked backwards out of the door or pass out in a faint. They will certainly be in for a surprise, not necessarily a good one. Whether they will be in a fit state to do any work remains to be seen.

Scent is a very dangerous thing. Mind you anyone who ever watched a Lynx advert knows that. After shave can cause hoards of women to chase you down the street. Not that I am influenced by advertising.

Smells are an odd thing. We tend to think only unpleasant smells are objectionable. There are certainly plenty of unpleasant smells in a room that plays as many functions as mine, including as my toilet. But even nice smells can be unpleasant in volume. I can think of many occasions where people have been so generous with their shower gel that the scent of it winds you. Then there are the people who use so much scented talc it literally sucks the air from your lungs. What about those who think perfume only works when a whole bottle is applied or the person who thinks deodorant sprays must be applied for ten minutes at a time. I think we all know such people. Maybe I have embarrassed you into realising one of those descriptions fits you, sorry.

Back to Father’s Day. I only want to mention it twice to make sure it isn’t forgotten. Anyone would think I’m a Father. Oh yes, I am. I’m going to bring in the obligatory statement everyone makes these days. Father’s Day can apply to any significant male figure in your life and if you only have negative male figures in your life, I am sorry to hear that. I also realise for those whose Dads are no longer around it’s a difficult time. I’m saying all this and it’s still a few weeks away. That was such a long statement I nearly forgot what I was saying.

The fragrance was chosen from the three, spray tested on my body and will no doubt be bought. But that of course will be a complete surprise to me. So, I wait with baited nose for my present. Meanwhile I am trying to get to sleep with a rather strong smell of several after shaves in the air.

This morning I called Mary down as usual to help me on the commode. For some reason she laughed when I told her my latest blog was called “A fragrant offering.” I can’t think what smell make her think that was funny.

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Science fiction or fact

“Pass me the proton gun”. That’s what I felt like saying after I heard that one of my tablets is called a Proton Pump Inhibitor. Surely it’s a laser gun, not a tablet, or at least an inter dimensional portal opening device.

It feels like medical science has shot on so fast in the last few years that the technology on my old favourite TV shows look like cave man tech in comparison. I used to think Star Trek had such amazing equipment. But in the early shows they just lay on a medical bed and a gigantic display read out heart rate and other vitals. You can now buy a ring on Amazon that will give you heart rate, oxygen and sleep patterns, a ring! Just about any smart watch does the same, well without the oxygen read out, unless you get an add on.

Sleep monitoring ring

A couple of years ago I bought an endoscope, to look behind a radiator. An actual endoscope. That’s a fibre optic cable that enables you to view into tiny holes and gaps. They use them in medicine to view down your throat and up the other end. My endoscope plugged into my laptop and enabled me to view a video feed on the laptop, now you can get Bluetooth ones that connect to your phone wirelessly and you view the feed on your phone. Of course they say, not for medical use. But they are effectively the same devices, available for a few quid. Don’t tell me no one is tempted to use them medically, hopefully none of my friends.

Then there’s the space age materials, around today. Pressure relieving gels made of silicone, breathable fabrics, super absorbent pads, and all the new polymers, plastics to you and I. Then what about the leap forward in electronic controls. I was looking at, well to be honest I was coveting, an amazing hospital bed on eBay. It was able to profile into a seat from a bed. The controls on it would not look out of place on a space ship. Multiple controls, read outs, even a colour LCD display. These days the simple controls on beds, chairs, wheelchairs and hoists are touch control. They use a circuit board level switches under the plastic cover. The more advanced even use the conducive type found on smart phone screens. These are technologies that didn’t exist when I was younger.

You can monitor most medical read outs via your smart phone and let’s face it a smart phone is one of the most incredible advances out. If you had told me when I was a teenager, much less a child, that I would be able to own a hand held computer that could: communicate with anyone on the planet with video and sound. Run so many applications the mind boggles. Track my location to a few metres. Speak to me and understand me. Translate most languages, well sort of. Be pointed at an object or place and tell me what it is. Take high definition photos and videos. Be a word processor, a desk top publisher, a portable power point device, an excel spread sheet, a complex calculation device, a drawing tablet, a video editor, a photo editor. I haven’t even scratched the surface. If you had said I could own one of these I would have laughed. Or I would have assumed it would be massive or cost thousands. But the vast majority of us now have and rely on smart phones.

My smart phone connects to my Hive heating, can check my cctv cameras, switch on my smart plugs and lights. It also links to my Amazon Alexa system. How much longer before we routinely get smart monitoring and medicine dispensing for dementia patients. I believe it already exists. Or how about a push button food preparation for people like me. Where a meal is taken from the fridge or freezer, heated and delivered to my bed robotically. Personally, although I could see that and even robotic care as possible in the future, I would never choose to replace human beings with machines. You would lose so much. Human contact is not replaceable by machines and it is vital to our wellbeing.

I like technology, it’s fun and helpful. But it has its place and its limits.

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Cutting through the red tape

(This is based on my experience, written as a personal guide, not an instruction manual.)

I’ve realised that for many people, including me, becoming ill is enough to cope with, without the hassles of ‘The System’ to navigate. So, I thought I would write a blog on cutting through all the red tape, aimed at helping anyone who has just become long term ill or disabled, or if you have family in that situation. I’m only writing from my personal experience. I do not claim to be an expert in this area. You need to check details of your particular circumstances with the DWP, NHS and/or local adult social care. I also highly recommend the CAB (Citizens Advice Bureau). This blog is designed to raise questions, not answer everything.

The first thing I discovered is that there are two separate systems when you are long term ill and about to be released from hospital. The NHS (hospital) and the community. Therefore, if you are in hospital and have a life limiting condition, the hospital have their own OT’s (Occupational Therapists) and Physio’s that are separate to the community ones. This might seem obvious, but it’s important. The significance being that the hospital team assess you and see if you are fit to return home and if so what equipment and care you need to return to your house. They put in place all the initial things you will need. Things like a bed, commode, carers, etc. But the care they setup is only temporary, a few weeks at most, whereas the equipment can be permanent. There is a problem though. They don’t sort out high spec wheelchairs (I believe they may loan push ones) and unless you already have a wheelchair or can get one, they don’t sort out ramps, temporary or otherwise. The reason that’s a problem is because ramps are not just needed for wheelchairs, but also for stretchers. I was returned home by stretcher, so the lack of a ramp was an issue. You’ll also need a ramp for any follow-on hospital visits if you, like me, need stretcher transport to hospital.

When I was last in hospital and due for discharge, the longest delay in getting home were access issues. The hospital transport service sent out an assessor to check access at my home. As an aside I should explain this was in January 2018 at the end of the period of time I was able to walk (look at my other blogs for details). So, we were in a house with normal access. In our case we have a step. How many houses don’t? The assessor said we needed a ramp; he also reckoned our inside access was too tight. It is tight, but I have had stretcher transport several times since too and from. He was prepared to have the crew try the internal access but would not authorise my return without a ramp. The hospital would not supply a ramp as I had no wheelchair at that time. A circular argument. We had returned my previous wheelchairs as I had been able to walk for nearly three years. After my wife had many fruitless phone calls to the hospital OT, a friend of ours assembled a temporary ramp, enabling my return home.

This is where I am really grateful to a wonderful friend for that ramp, and a fantastic ambulance crew, three of them (an extra one joined them at our house). They persevered even though the temporary ramp was not ideal for my weight on a stretcher. This enabled me to get home. Our friend did a lot more than the ramp. He helped Mary prepare the front room for my community profiling bed.

A word about the temporary care package from the hospital. They put your care requirements on a system that gets bid on by a few care companies. The lowest bid wins! The trouble is companies that bid don’t necessarily have enough capacity. They just want any extra business; it seems they bid first and see if they have capacity second. The company that won me in auction, it feels that way, did not have capacity for the hours I was supposed to get. Which meant that I was given less care each day than I needed, even though they had bid on it and accepted the contract for those hours. The other problem is that the care company who accepts the contract has that contract with the NHS. So, they don’t feel they need to meet your wishes, the NHS is their customer. Every problem I had first had to be authorised by the NHS.

Next step Adult Social Care, that’s community, they take over your care and therefore the payment and authorisation of the care package. This still means you are not directly the client of the care company. But it’s a step towards things changing. You start to get choice. Adult Social Care do an assessment of your needs. They decide how many hours care per week you need. If you have a partner caring for you, they look at respite weeks for them and extra hours care that will help them if they have needs. Looking after someone who is long term ill and needs 24/7 care takes its toll on your health and respite breaks help to prevent burn out. If your partner/carer becomes ill, then the state will end up looking after you full time. They want to prevent that.

Once care is granted by Adult Social Care, you have two choices. First you can let Adult Social Care get you those hours exactly, but from a supplier of their choice. You will not be the client directly. So, it will be like the hospital package with all the control out of your hands. Or you can take direct payments which are less money per hour than any care company charges, yes you heard right, than any care company charges. The council get special rates on everything, so a couple of companies have negotiated prices with them that are at the rate they pay if you let Adult Social Care organise your care. But those care companies treat those contracts as second class. That is my opinion, I cannot claim it as fact, it’s how it feels. They send whoever they want at whatever time suits them. So, if you have a problem with smokers, or loud people or if you don’t want male carers or have any special requirement, tough. If you want to get up at a set time each morning, you’ll be lucky. The cheap rate for the council comes at a cost. Yet some of the staff I have spoken to at Adult Social Care seem unaware of this. They are convinced there are agencies that charge the adult social care rates to individuals, I can’t find them. Either they are as rare as hens’ teeth or like Scotch mist.

I just want to say a word of praise for our main Social Worker, she is brilliant and does understand these limitations. She just has no power to change it. She did a fantastic job organising my care and setting everything up. In fact, most social workers we have dealt with are great, they just lack the power to change the system. The current system means you no longer get a permanent social worker. One sets everything up for you, then you just call the ‘hub’ and speak to the duty social worker for any changes. I am always pleased when the social worker who I know is on duty. For some unknown reason three departments organise Direct Payments. Adult Social Care authorise it, a department at the council pay it and a non-governmental charity, in my case Enham, administer it. Three different lots of staff are being paid to sort out one lot of money. Is that efficient? Cost effective and or does it waste the money that would otherwise go to care? You decide, I have my own opinion.

Direct payments buy you less hours than you are assessed for, but you have choice and can get consistency of carers. They buy less hours because of the difference between the amount per hour paid by adult social care and the amount per hour charged by care companies. Normally at least £2-3 per hour different. I think counsellors and politicians who setup the system should be forced to have the council run system of carers provide them care for a few months. Or try to buy care at the amount provided under direct payments. It’s a nonsense to say you need a certain number of hours then give you insufficient funds to buy those hours from any care agency. Even micro providers charge more than the amount given and they are self employed individuals. The system would soon change if politicians had to use it themselves. One other thing, you receive a different rate of Direct Payments if you use an agency than if you use a micro provider. A little higher for an agency as they are CQC registered and have lots of extra paperwork.

The basis of how much, if any you pay is assessed by the council based on your income and savings. I understand we live in hard pressed times and I realise that I am fortunate to live in a country that provides free care to people like myself without other means. But my point is that either the correct amount per hour should be supplied or at least it should be acknowledged that it is impossible to meet the hours assessed with the amount given. To pretend that the hours assessed and payment given match or can ever match is a folly.

The other very odd part of the system is for respite care. That whole system is very upside down. The way it works makes no sense to me. But it’s too complex to explain here.

A lot of things run in parallel when you come out of hospital. An OT and Physio from the community should be assessing you. A district nurse will no doubt call on you and if you need it, your GP. Depending on your level of limitation you can get almost everything done at home. There is a dental access centre in Taunton you can register with, they do home visits. The same rules apply as with visiting a dentist in terms of payment. If you had free treatment before, you still do. The GP can visit you. Even opticians can test your eyes at home. Again, the free treatment rules apply. But, dental and optician visits at home are second best to going into a practice. They travel with very limited equipment and can’t do everything. So, if you can travel, then do.

With hospital appointments if you have no transport of your own, need to travel by stretcher or wheelchair on public transport would be impossible (buses with a large power wheelchair are a nonstarter). There is hospital transport. They question you closely about why you can’t travel by another method. Hospital transport is also a very inconvenient method of transport. You must be ready 2 hours before your appointment time and can wait an hour or more after.

It’s the OT who assesses you for aids. The hospital OT will have supplied initial equipment, but things like hoists, slings, chairs and other more specialised equipment will come from the community OT or they will advise where to buy them. On the subject of hoists, if you are unable to stand or weight bear, the standard type supplied will be a push portable one. Ceiling hoists are only supplied if they are deemed necessary in your circumstances, as they are in ours.

Just recently we have been made aware that there is a specialist OT who deals with housing, both modification and allocation. No one told us about that when I was sent home from hospital into my front room without access to a bathroom and with difficult access to our house. That’s why I am writing this blog for others. Information is vital, we should have been told advise was available about housing. If in doubt, ask.

Wheelchairs are a whole area in themselves. You need a GP referral for a wheelchair. That referral goes to Millbrook Healthcare. They send out an assessor, eventually. It took 8 months for me and apparently, I was marked very urgent. It seems to me that the new privatised system for wheelchairs is slower than the old system through Exeter Wheelchair Services. In Hartlepool, the NHS wheelchair service assessed me and built me a custom wheelchair within 3 months. The way it works with wheelchairs is that you are assessed for the minimum type that meets your need. In most cases that is a push wheelchair. If you need a power wheelchair because of your needs, then you will only be allocated one if you can use it inside and outside your house. Years ago, when I was first allocated a large high-backed reclining wheelchair, it was still a push wheelchair. See my blog ‘Keep on rolling’. You only get a ramp supplied in your house once you have a wheelchair. Some Church friends bought me a second-hand power wheelchair while we awaited the NHS chair, this meant a temporary suitcase ramp was then supplied. But we were fortunate, friends from Church paid for and other Church friends built an even better concrete ramp outside our house. It accesses our front door and back garden.

Me using the concrete ramp outside our house last year, in wheelchair our friends bought while we waited for NHS one.

I hope my experiences have cast a little light on a complex area. You can see there are many anachronisms and it’s frustrating to navigate. Without Mary sorting all this out over the last few years I don’t know where I would be. She has had many a stressful phone call with different departments. I realise this blog may make it sound like I sorted things out. In reality most things were sorted by my wife Mary. I have only really got involved more recently as things have been easier.

May your journey through the red tape be a simpler one than ours.

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A writers’ life

When I used to picture my future life as a writer. I was sitting on a sun-soaked veranda in the South of France, sipping an espresso and glancing out to sea wistfully, while conjuring up scenes of fantasy and adventure. Instead I’m lying in bed in a small room in Wellington, looking out at our tiny courtyard garden, writing about the frustrations and daily joys of life with a long-term disability. Yet it is that reality which has led to me living out the life of a writer, not my childhood fantasy.

Mind you, right at this point in the blog I’m sitting in a conservatory on a sunny day, at Cleeve Spa Hotel. It’s attached to their new coffee shop and is a great place for me to sit and write. My cup of cappuccino is beside me. I have a view of trees and distant fields through the large picture windows. There’s a gentle squeak from the coffee house sign as it blows in the wind outside. Just enough to give ambiance and interest. Playing in the main part of the coffee house I can hear the strains of background music. This is not a busy place yet, good for me, but no doubt not good for business. I can’t imagine it will stay that way, as people discover this oasis on the outskirts of Wellington that serves food and drinks from early till late in such lovely surrounds.

My bottom is reminding me I’ve been sitting in my wheelchair for quite a while. Even though I have a battery powered ripple cushion, a result of generous donations from friends and family, my sensitive bottom still feels the pressure. The “occupational”, is that the right word, hazard of a permanent wheelchair user who still has feeling below the waist. Not that I would want to lose that feeling, many other problems would ensue. My gluteus is not very maximus. It never was, but since the illness I have tried not to put on too much weight. The easiest thing to do when you spend all your time limited, is eat. The easiest things to eat are sugary, sweet things. I can polish off a whole packet of biscuits, or bar of chocolate, not the small ones. So, I had to make a choice. A few months ago, I was going through one of the regular bouts of sickness I get. It put me off most food, but particularly sweet stuff. After I recovered, I just made a choice to continue not eating sweet things. Although I had lost the sugar cravings, the desire for sugar was not gone. Christmas was very difficult, and Easter a complete nightmare. But I continue and it is not just enabling me to continue at my current weight but even lose weight. Important when you are hoisted and have a limited width wheelchair. I’m not yet in danger of fading away “to a cough drop.” As my mum would say.

Back to ripple cushions. I had only heard of them as being mains powered, for beds or armchairs. There are ones, again mains powered for wheelchairs. But what is the point of a non mobile ripple cushion for a mobile chair? A ripple cushion is an alternating air-filled cushion, they work in different ways, but the principal is the same, pressure changes on different parts of the cushion, so that you get a ripple effect. In the case of a bed mattress, as I have, the pressure change moves up and down the bed. It’s like moving a patient regularly to prevent pressure sores. The same applies to cushions for chairs or wheelchairs. But I’d not seen a portable one for a wheelchair until a few months ago although I thought there must be such a thing. It was developed by one company and brought out in 2017 and it’s called an Alerta mobile cushion system, this has been amazing for me. I can now stay much longer in my wheelchair. I still find the discomfort builds up after a few hours, so I must recline my chair to alleviate that. The key difference is that I’m sure I will not get pressure sores, it’s just uncomfortable after a few hours in one position. The device prevents sores by the ripple effect of alternating the pressure in different areas of the cushion, but no device can prevent discomfort from sitting in one position. Wheelchairs by their nature restrict you to one position. I am fortunate that I can profile my wheelchair and so alleviate that.

Because of a combination of things. The profiling wheelchair, the Alerta ripple cushion, Conveens (see my blog Not so public convenience), and my new medication we can plan a trip by train to stay with one son and hopefully also see the other and his wife. Train assistance and wheelchair accessible taxis play their part too.

One extra factor has made planning this trip possible. A hospital type bed at our son’s house. I first looked at hiring one. Once I’d recovered from the shock of the price quoted and they assured me that wasn’t to buy one, I looked on Ebay. A wonderful gentleman was selling, not just a profiling bed with sides, but everything else I needed thrown in, all for £99. One problem, it was over a hundred miles from where my son lives. Transport looked costly. Then this amazing guy volunteered to drop it off for the cost of the diesel; £20. There are some very generous people out there. Now I will be able to travel to our son’s house, have a bed to sleep in that I can match to my wheelchair height and slide onto. Not ideal, but I can do it for a week. I will really look forward to my hoist when I get home.

Those more astute of you, I’m just buttering you up, will have noticed that my blogs include a wide variety of types. There are autobiographical, fiction, poetry, thoughts, theology, experience and I am not the only author. Mary has so far written one piece with more to come. The blogs were written over several years, some are very recent, and some over ten years old. Some were written when I was taking my OU degree in English Lit and Diploma in Creative Writing. Yes, that’s right, that means I know nothing about writing. Each type of writing is categorised but depending on the type of device you are reading this on, those categories may not be obvious. A word of warning, if you are reading this post on a phone, watch out for that lamppost ahead! I feel I must say that now as one of my readers nearly walked into one while reading my blog.

It takes me a while to finish off a blog, so as I finish this blog it’s 4.30am and I’m sat in bed. It’s still dark outside, but at least it’s warm. When it’s cold I have a woolly blanket to put over my shoulders. A friend from church knitted it while praying for us, so we call it our prayer blanket. I used to sit in a small pool of light from my bedside light, but now with all my smart switches (see my blog It’s a smart world) I have light all around me. Sitting, surrounded by light is where I will leave this blog.

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A moment at a time

Diary extracts:

September 9th 1993

Migraine, chest pain, sickness. 4 lots co-codamol, 4 lots Ibuprofen, 3x Metoclopromide and 1x Zomig

24th March 2010

Woke at 4.50am! This is getting ridiculous. My right shoulder has joined the clamour of pain waking me each morning. Still it makes a change from the headache that usually pierces my slumber.

12th May 2019

Woken at 2.40am by pounding migraine. When will I learn to pace myself better. I had been to a two hour get together the night before, really enjoyable, but beyond my capacity.

******

Normality?

At a recent consultant’s visit, he asked me:

‘Can you remember being normal?’

‘Yes!’ I replied aghast.

I wasn’t aware that illness made me abnormal. In fact my memory of normality, if that is what it was, is painful in many ways…

There was an incident that still shames me to this day. A friend of my wife Mary was visiting us with her little boy. It was early in our married life, before we had children. The little boy had a long term, but not life threatening, illness. I was very intolerant of illness. We were having a cup of tea and the little boy, who was about five years old, was sitting and playing quietly with some Lego blocks on the floor. His mother was chronicling to us details of her son’s illness, and the many doctors he had seen.

As a trained medical expert with zero years of aesculapian training and no experience in healing, I sat and observed this seriously ill child. Watching him playing quietly for ten minutes, I could of course make a complete medical assessment of him.

‘He doesn’t look ill.’ I stated.

His mother was taken aback and responded sharply.

‘He does have a few good times.’

‘But he’s playing quite happily now. You said he’s always ill.’

‘He is ill! Playing for a couple of minutes doesn’t change that.’

‘Oh… I see.’ I said with deep meaning.

I chalked that up as a point won as I watched his mother squirm. Mary looked crossly at me as if I had done something wrong.

‘Mike, why don’t you go and get the cakes.’

So I walked out victoriously, while Mary tried to console her friend. I had proved my point to my satisfaction. The mother stopped talking about her ill son.

It wasn’t until I became chronically ill years later, and started to suffer a similar disbelief from others; that I realised how badly I had acted. I have often wished I could see her again and apologize, but we’ve lost contact.

An illness that is not visible to a casual observer is a curse twice over, once because of the illness itself and then because of misunderstanding and disbelief. People are not deliberately cruel; they are merely ignorant, as I was with Mary’s friend. Ignorance leads us to think we know best or to judge without understanding.

******

Conversation:

Terry is someone who is happiest in a throng of people. At six foot with rugged features, and a confident manner he has always been attractive to women. He was unhappily married once some years back. As a very loving father of an only son he has spent most of the six years since looking after him, with his ex-wife taking the weekend shift.

Terry has recently set up a company to run from home. One thing about Terry that has always struck me as odd, is that he is the most laid back ‘workaholic’ I know. I have known him since school and I have never seen him as being in danger of ‘overdoing it’. Yet somehow in his relaxed and laid back manner, while seeming to do very little, he gets a lot done. He is a conundrum to me.

One day we were sitting in his spacious lounge, Terry was stretched back as usual on his huge red sofa.

‘I’m never ill, I don’t have time.’ stated Terry, while answering a text on his phone.

‘You don’t just get ill when you have the time.’ I replied in surprise.

‘My approach is positive thinking, I don’t let illness stop me, and I just keep going.’ Terry finished his text as he spoke, and then looked up at me.

I took hold of my increasing annoyance at Terry’s lack of understanding and replied:

‘I think you’ve been very lucky not to have any serious illness that would prevent you working.’

‘Oh, I’ve had loads of illnesses I just ignore them.’

‘Right – Let’s look at something well known like flu. They say the definition of flu is this: “When you’re too ill to get out of bed to pick up a £10 note off your windowsill.” So when did you last have flu?’

‘When I have flu, I just carry on working.’

I took a deep breath to remain calm.

‘In that case you are talking about a bad cold not flu. The reason for the definition is so that you can understand the difference.’

‘When I’m very ill it just doesn’t stop me working. I have a strong constitution.’

‘Terry, I used to think like that. I worked on through bad colds, migraines and I even drove 300 miles with pleurisy, for goodness sake. In fact they reckon it’s because I carried on working through illness that I am so ill now. There are some things your body will not let you ignore… it just stops!’

‘Well I can’t afford to be ill; I have far too many commitments.’

We were saved from further argument by Linda and the children returning from a walk.

******

Memory:

I see my life stretched behind me like the contents of a roof rack shed upon the road by a speeding car. I can see it arrayed messily behind me on the tarmac of life. Some memories piled up others spread out; some appear damaged parts missing, others almost complete. There in amidst a great jumble I see one particular memory. I had forgotten it, packed it away.

It is the early 1990’s and I have been ill for over a year, but off work just six months. One of our son’s is having a birthday today. We are celebrating his Birthday, and I am hiding how ill I feel. As we start eating his Birthday Cake there is a knock at the door. Mary answers it and finds my boss standing there. She invites him in:

‘Come in Martin, it’s our son’s Birthday, we’re having a party. Do you want a cup of tea…piece of Birthday cake?’

‘Umm… no… sorry… I hadn’t meant to… intrude. I.. just wanted a word with… Mike. Urr… Happy Birthday.’ Martin faltered.

‘What was it you wanted?’ I asked.

I was sitting at the table with our children surrounding me, chocolate cake smearing their faces and hands. They were very excited to meet my boss. Our son assumed that he must have come especially to say Happy Birthday.

‘Can we talk privately?’ Martin asked, regaining his confidence.

I walked hesitantly into the hallway, but the children were so excited they followed me.

‘Wait there children, I’ll be back in a mo.’ I was feeling a sense of foreboding.

Once we were alone with the door shut Martin began.

‘Umm… when you came to the office today to hand in your doctor’s report, you should have been given this.’

He handed me an envelope.

‘What is it?’

‘It’s a notice to terminate your employment, with one month notice, effective today.’ Martin stared at the floor while he spoke.

I had never been fired before and certainly not for being ill. So I just stood staring at him for a moment before saying:

‘Why?’

‘Because you are not able to carry on your job due to illness. I’m sorry.’

He then left without saying goodbye to Mary. I slumped onto the stairs and stared at the letter. Mary heard the front door close and came into the hall. The children bounded out behind her.

‘Daddy ready now?’ our son shouted.

I just looked blankly at him.

‘Are you OK? You look shaken.’ Mary asked gently.

I was trying to control my emotions but Mary’s gentleness released my pent up sadness. We have always believed in being honest with our children about feelings, as long as they also saw how things were resolved. I would not have chosen to be upset on our son’s Birthday, but the pain had to be dealt with, so I cried and we all hugged and talked. After we had expressed our sadness we finished eating the Birthday cake and watched a family film. It was not the way I would have chosen our son’s Birthday to be and I felt bitterness towards Martin. But he did not know how bad his timing was.

******

Reflections:

My profound relief is that illness comes a moment at a time. Had I known back in 1993 that I would still be ill in 2019 I don’t think I could have coped with that. It is easier to cope day by day rather than looking many years into the future. That way there is always hope and there are always fresh challenges.

Not so public convenience (Updated)

(This blog designed to advise and help, it is humorous, but also factual. It may cause you to blush)

Wheelchairs are brilliant machines for transport. Power wheelchairs in particular have transformed my life. But a wheelchair is after all still a chair. Think about a chair, you sit on it, it has a solid seat, and no hole in it. So, imagine that you are a man and you need a wee. I guess it may be worse for a woman. You may not want to imagine it, you might prefer to think of something else, I am trying to help for those who would find this useful. These are everyday realities of being disabled. Let’s forget for a moment if you need to do anything more than a wee, that’s a whole other area.

You are sitting down, and you need to wee. Well you might think, there are urine bottles you can use. True, there are. Think then about Wheelchairs, they are narrow, the width of your bottom typically, so your legs are together. Still with me? Maybe you need to act this out in your head. Where does the urine bottle go? If you can put it in the right place how do you ensure, no leaks at a 90-degree angle without injury to yourself. Perhaps you are beginning to see the issue. It is possible but not easy, after all it can be done. Then imagine you are on a train in the disabled space. The train companies give much more space these days for wheelchairs. But typically wheelchair spaces face the rest of the seats. That is also true on many buses. Perhaps we are expected to entertain the crowds while we are there. Getting back to relieving oneself, I don’t really fancy entertaining the other passengers by using a urine bottle in front of them, or under a blanket with everyone wondering what I am doing. It would be a little off putting. Talk about performance anxiety. Fortunately, there is an alternative and I found out about it after I had struggled with urine bottles in wheelchairs for years.

You might think how can Mike share such intimate details publicly. But, if I do maybe I can help others. I didn’t know about these things. I have had to struggle finding out. If my embarrassment can speed up the help for others, then so be it.

The alternative is a Conveen. I believe there are various makes, but I only know about the one I have used. Coloplast Conveens. They are external catheters. Normally catheters go inside the urinary tube in either a man or woman. Conveens, which I think are only available for men, fit on the outside. They look like a condom, but they have an open end with a fitting for a tube to go to a urine bag. They are adhesive, I will come back to that as it causes some fun fitting them. The bags come in two types, ones that attach to your leg and ones that attach to your bed or directly to your wheelchair.

Remember I said Conveens are adhesive, so they must stick all around to prevent leaks. Obviously, you need the right size. Yes, they send you a device to measure the diameter of your manhood. After you have recovered from the disappointment of the fact you are average, boasted in the fact you are large or wept over the fact you are small. You can order them. When I phoned the surgery to give them my size, I had a very funny conversation.

Prescription line lady, “what size do you need?”

Me, “30mm”

Prescription line lady, “is that length.”

Amazed silence from me, then “no, that’s diameter.”

I feel like I should wait a few minutes at this point while all the guys reading this, finish measuring. By the way the diameter range available is 21 to 40mm. Who knew such things eh? Or who wanted to.

There is a special measuring device (See picture below):

Fitting a Conveen, is, let’s say tricky. Think adhesive, hair, preparation adhesive, yes they give you a preparation wipe of extra adhesive. So, everything is sticky. You really need the two pairs of hands you have with a carer to fit it successfully. If you get it right and don’t catch all your hairs in it. Then connect the tube right, it works great. Much better than any urine bottle.

I would say if you are someone who needs to use a Conveen, read the instructions carefully and follow the advice of the rep to the letter. I ignored one bit of advice and realised afterwards why it was important.

Below is a picture of a Conveen sheath, the part that fits over your manhood. It’s rolled up in its package so you can only see the top that connects to the tube, that then goes to the urine bag (see photo below the Conveen) the ribbed part is a strain relief or air gap. This is where I went wrong. It’s important to flatten all this part with your thumb and fingers when fitting so none of your manhood goes into any of it. If it does, then that strain relief part, with the ribbing just acts as a pinching device, not nice. The only bit that goes over your manhood can’t be seen in the photo, it’s all rolled up and sticky. It unrolls as applied. Glue on glue, very sticky. Hence no leaks. So long as you apply it right and have the size right, no boasting. (Also note, there are two lengths available, so check you get the appropriate length, no comment).

Next step you connect the tube from the urine bag and attach it by straps to your leg. Make sure when attaching it to allow for expansion, after all it will get filled up. The urine bags come in different sizes and will need emptying, so leave the drain tap accessible and check it’s closed. It’s easy to accidentally knock it open if your carer pushes it back under your trouser leg after draining. By which you will realise they have a drain tap at the bottom and your carer or partner has the enjoyable job of draining it, see photo below.

Conveen sheath in its package. Note the ribbed section, avoid inserting your manhood into this bit by squashing the top of sheath when putting it on.

Leg bag, pipe at top connects to the sheath, see below for close up of the drainage tap

Note, make sure tap is closed after draining.

At the end of the day you may be thinking, but how do you remove a sticky rubber thing from such a delicate area. Your eyes may be watering in anticipation. Don’t panic, they thought of that. There is a non stinging release spray that is amazingly effective at removing the glue. It’s a pain free process.

This is the glue remover spray.

Have I freaked everyone out sufficiently and caused everyone to need a lie down or at the very least some counselling? Seriously, I hope I have helped to explain and clarify some things and point you in a helpful direction.

Let me just emphasise these Conveens have been life changing for me. I can only recommend the Coloplast ones as they are the only ones I have tried. They sent me samples to try first. They work brilliantly, the only failure I had was when I applied it wrongly the first time. Every other time since I have had no issues. So follow the instructions carefully.

I read this blog our at a writers group in Wellington and one big issue that became apparent was, what about women? There are internal personal catheters for women, but that is not as easy or convenient.

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Poem on suffering

Poem by Mike Nevin

(Written in January 2018 when I again lost the use of my legs)

It’s when we have given up

When in the depths of despair

When darkness closes in

When our legs fail, and our arms fall

That is when we discover true strength.

The strength beneath us as we fall

The strength beside us as we cry out

The strength within us we never knew.

If you feel alone.

If your tears are dry.

If your pain has overtaken all reason.

There is only one way

There is only one hope.

God never lets us go.

God never fails

God always loves

God is hope, life and joy

God is love.

Love sounds such an empty word

It’s meaning drown by repetition and trite words

Love seems such a simple notion

It’s power drained by so much use.

But love, real love, the love of God

Is a love that created the universe

A love that overcame death

That love, the love God has for you and me

That love is the only answer to the mocking cry of sickness

It answers the empty power of evil

It answers the sadness

It answers the desperate plea.

It answers pain and confusion.

God says, “I love you, I am with you, I will not forget you.”

God says, “I am here.”

Into the Ark

The plan was a nice day looking at the animals, but as the taxi neared Nailsea we began to wonder if the zoos’ name may be slightly prophetic.

For weeks we had planned a day out at Noahs’ Ark Farm, it’s a zoo near Nailsea and Bristol owned by friends of ours from our days in Nailsea. The planning had started during the most unusual April ever, when the weather was more like summer than spring. Easter I’d actually got sunburnt. Understandably we were expecting the weather to be even better in May. Have you noticed how the weather seems to read your mind and enjoy surprising you? Gradually as you will have noticed, if you are reading this live, the weather had been getting colder and wetter.

To go out for a day involves a lot of planning for us, so we can’t just wake up one morning and say, “weather looks nice, let’s go.” We decided on a date, Thursday May 9th, booked a taxi and had already organised early morning care with my micro provider, I have both an agency and a micro provider. My micro provider tends to often cover early mornings and evening visits. She is a really lovely person and very good at her job.

We kept looking at the BBC weather app in the weeks before, first it showed colder, overcast weather, then rain. Then a few days before we were due to go, it showed a break in the rain. We still hadn’t booked firmly with the taxi at that point, just provisional, so we decided to confirm the trip.

The day before was heavy rain, but we hoped the air was just clearing. On the morning of May 9th it was clear and dry; in Wellington. Our hopes rose. I checked the BBC weather for Nailsea and it showed rain all day, what do they know.

As we were going to be out all day I had a Conveen put on. These are external catheters. I will look at those in another blog, because they have caused much hilarity, but they are also extremely useful in my situation.

Knowing it was cold and rain expected I was wrapped up like an Eskimo. I have faux fur lined leggings that I sit in, on the wheelchair. Then a coat, hat, scarf, gloves and a lined waterproof cover over the top. People look jealousy at me and often comment that I have the right idea. Because the back of the waterproof cover goes over the head rest I look a bit hunchback.

We were travelling with our favourite taxi firm, Archies cabs, his taxis are bigger than most. So I can easily fit into one of his cabs and slightly recline. I have to make sure my shoulder straps are tight and neck brace on plus my arms under the restraints. That way if I have a collapse I don’t get bounced too much. I did have a collapse and all was well. Archies cabs have good suspension. Paul, the owner was driving and he is careful on bumps.

Most of the journey was fairly clear weather, just the odd raindrop. As we neared Noahs’ Ark the Biblical floods started. There was not just water pouring out of the sky, but water forcing it’s way back up from the drains! Water from above and water from below, if you know the Bible story you will understand the reference. Mary and I didn’t know whether to laugh or cry. But we decided we would pray that there was a break in the weather, and we would make the best of the day.

Arriving ten minutes early we had to shelter in the bicycle shed, but a kind ticket office staff member let us in early. I don’t think I have ever spent as long buying tickets and reading the signage. I am sure it was not because that bit was sheltered and the rain looked heavy. When we did venture out the rain had eased. Even so we headed for somewhere warm and inside, the reptile house.

One of my previous carers gave Mary and I a pink bendy toy. Really it’s a plant clip to hold a plant against a stick, but we use it as a mascot and call it Kermit. He travels with us and gets photographed in various locations. He posed by one of the reptiles.

We didn’t need to shelter in an ark, there was no Biblical flood. Although there were some bouts of heavy rain and it was chilly. We also had sunshine, long periods of dry weather and times when it just lightly rained. Our prayers were answered. We also met lovely people, both other visitors and the staff. Everyone was helpful kind and understanding.

At lunchtime we went into the café. The tables were laid out in rows. Normally as I am in a wheelchair I go on an end. But I fancied a window view, so I weaved down between the backs of peoples seats in between the tables to the window. It worked ok getting there, but on the way out more people had arrived and one poor child had to be lifted in their chair, by Dad, out of my way. It may seem I was being unreasonable going to such an awkward place, but why shouldn’t I have a window view occasionally.

We managed to see a number of the talks and most of the animals played ball and came out to prowl, frolic or at the least feed. Probably the most exciting talk was the Wings of Wonder which, given the weather was inside. You haven’t lived until various large birds of prey have brushed by your ear at speed.

As may be expected from my previous posts, I had several collapses during the day. The zoo was so empty, maybe twenty or thirty people, that we could always find a quiet sheltered spot for me to recover.

We also bumped into someone we knew from our Nailsea days who works there. It was so lovely to catch up a little.

Since our last visit Noahs’ Ark has improved it’s disabled facilities greatly, including a changing places toilet. No, that’s not where you become someone else. It’s basically an adult changing room for disabled. Think baby changing but with hoists to do the lifting. They have one in Weatherspoon’s Wellington. It’s new at Noahs’ Ark and everything is very swish. Lots of room to manoeuvre inside.

I was able to get most places, only a couple of the animal enclosures had steps. The maze is not accessible, and there are a few platforms with steps. The exciting bit is getting around the site in a power wheelchair. Some parts are an old farm with concrete drives, other bits are very steep. Everywhere has tiny bumps and indents, plus cambers on the paths for drainage. The gravel bits have various size stones and in some places the stones have gained bigger holes. Overall the ride around is thrilling. Not sure everyone would enjoy that, but I did. Of course not every power wheelchair user would attempt to go everywhere I went. I also travelled fairly fast. A push wheelchair would not be as exciting, but you would need strength on the slopes. All of this is explained in their accessibility brochure. I find they gave the best details of anywhere. It is an accessible site, more accessible than most. As with all such places you just need to be cautious. Because I am not cautious by nature it is just as well my Quickie Salsa M2 was able to cope with the terrain.

The only thing that would stop us going lots of times is the taxi cost. We had to save up for this special treat. You might wonder why we travelled all the way by taxi, it may sound an extravagant method. But, the taxi to Taunton Station plus train fare and a taxi from Bristol station to Noahs’ Ark is the same as all the way by taxi. It was a fabulous day out and the weather didn’t dampen it.

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Ambulance transport

(A note of warning for the squeamish, there are descriptions of an accident you may find difficult)

Emergency and non-emergency hospital transport I have travelled in them both. As a kid I used to look at ambulances and think they look fun to have a go in. Of course, in my youth they had simple sirens and blue rotating lights. None of these complex LED, close encounters, night club, stage show lighting effects. Nor the fantastic range of sounds they have now. These days you feel like they could actually play a tune on their sirens. I don’t mean to be dismissive and silly; they play a very serious role and I appreciate that more than many.

The first time I travelled in an emergency ambulance was in 1989. We were living at Wesley College in Bristol where I was training to be a Methodist Minister, I didn’t complete the training due to what happened next. It was breakfast time; I had just come back from morning prayers and was getting my stuff for the first lecture. Mary pointed out that there was a big pile of washing in the kitchen. Our washing machine had been broken for a while and the replacement part had arrived a few days earlier I just needed to fit it. This was not a complex job, just a new drive belt. Had it been a new bearing I would have needed a few hours. So, I decided I would quickly do it before the lecture, bad choice, I was too rushed.

Frances Greaves House, the flats at Wesley College, where the accident happened

Thinking I must have already unplugged the washing machine, note to self and everyone else, always check an electrical device is unplugged before taking it apart, I took the top cover off. The old drive belt had perished and was easily removed. I took the new belt and tried to hook it on to the lower drive wheel. This is not something easy to do just by letting it hang down and hoping it will slide itself on. You need to get you hands on it and push it into place. That was the near fatal mistake I made. I reached down into the washing machine to push the drive belt onto the bottom drive wheel. As my arm reached in, it contacted the exposed pins of a 415v 13amp capacitor. If you have ever witnessed a car being arc welded, that is what happened to my arm. An arc of electricity burnt it and I was also electrocuted. As I was bent over the machine with my arms down inside it, when my muscles contracted it held me tight against the capacitor and thus trapped. Unable to move, being burnt and electrocuted, I knew I was slowly dying. Really I should have died quickly, the doctors say I must have the heart of an ox.

Mary was in the front room with a 5-year-old daughter and a 3-year-old son. First our daughter came to the kitchen door. She looked at me, saw smoke and bright sparks and realising it was something akin to fire ran to the front door shouting “Fire, fire!” Mary thought she was playing. Then our young son came to the kitchen door looked in puzzled and walked away. I am so grateful neither of them touched me. The current passing into them could have stopped their hearts.

Mary could hear the hissing of electric current but assumed I had fixed the machine and it was filling with water. The electricity coursing through me was preventing me moving or speaking. I was in more pain than I had ever experienced or have ever been in since. Ever muscle and nerve ending was being triggered. To say it was agony would be to downplay it.

Eventually I summoned up every fibre of strength I had to repeat the phrase, “Turn the power off.” Mary heard me and came through. Again, fortunately she did not touch me. She was pregnant with Adam. She looked at every switch in the kitchen, not knowing where the flats’ junction box was. Then she worked her way through them all, starting at the light switch. I’d managed to turn my head towards the door earlier. I watched in what felt like slow motion as she switched each of the many switches off. I thought ‘By the time she gets the right one I will be dead.’ But obviously I didn’t die.

Once she turned off the power, she ran to phone 999. As I pulled my arm from inside the washing machine, I got an additional shock. There was a deep hole in my arm and blood pumping from it. Mary was telling the 999 operator I had been electrocuted, not knowing this. I looked around for something to stem the blood flow and found a tea towel to make a pressure bandage. I then sank to the floor in a pool of my own blood.

After phoning 999 Mary ran next door to get another minister in training, a friend I feel forever indebted to, Fran. She came in and without any thought for her clothing or herself, she sat in the pool of my blood and put her arm around me. This enabled Mary to sort out care for Sandy & Chris while we awaited the ambulance.

The ambulance took ages, they couldn’t find Wesley College. When they eventually arrived, I had brightened up considerably. I am one of those people who react opposite to the situation. In an emergency I am less panicked rather than more. I was laughing and joking in the ambulance. They strapped my arm under my nose, and I said, “I am never going to eat bacon again!” Think burnt flesh. By the way I eat bacon all the time now, so that didn’t last. That first ride in an emergency ambulance was a disappointment in many ways. I was sitting up looking out of the window. They didn’t have the lights or siren on. They had checked me over at the flat and decided I wasn’t in imminent danger. They were wrong. The doctors at the hospital told Mary, not me, that the next 24 hours were critical. After a major electrical accident my heart could have just stopped at any point in that time. I was wheeled into and out of the ambulance in one of those special chairs. I don’t mean to sound flippant; I don’t really want to be in need of travelling with sirens on. It’s just youthful expectation of an emergency ambulance. The ambulance crew were absolutely brilliant, helpful, friendly and skilled.

Another time I travelled in an emergency ambulance, was when we were living in Wellington and my legs stopped working again. This was after the two and a half years of them miraculously and medically unexplainably working. We waited many hours for an ambulance with the paramedics in. They had decided from the GP report that it wasn’t an emergency. Not walking is a big problem, but not life threatening.

They eventually arrived about 10.30pm. After some examinations from the paramedic they decided to take me in for further tests at Musgrove. Remember at this point, the reason they had been called is that I couldn’t stand or walk.

The lead paramedic said “As your alley is a bit bumpy and you have a lot of steps into your house, we haven’t brought a stretcher in. Can you walk to the ambulance?”

Obviously, I said I couldn’t. He then insisted that with them supporting me I could. I wasn’t given a further choice. They basically took me by each arm lifted me off the sofa and almost dragged me down the alley. My slippered toes actually scrapped the alley floor. I was trying to move them, but I only managed to move my feet about one step for every five or six of theirs, even then it was only short irregular movements, not walking. It was a terrible and very unpleasant experience. My head was hanging down, my body slumped, my weight supported totally on the two ambulance crew and my legs stiff and dragging. Had it not been for everything else that happened at that time I would have made an official complaint about the paramedic who was leading that team. He should have fetched a chair at the very least. I had enough to cope with losing the use of my legs again to think of making a complaint. Of all the times I have travelled in an ambulance, they are the one crew, the paramedic lead in particular, who were awful. All the others have been so helpful, kind, caring, professional.

I have also travelled many times in non-emergency ambulances. Let me tell you of two. I had an appointment in Liverpool in 2018. The ambulance crew were with Mary and I the whole day. It took four hours each way plus a stop for toilet and lunch. For me the toilet stop was just using a urine bottle in the ambulance. When I travel in hospital transport ambulances I must do so lying down on a stretcher, because of the collapses. Travelling on a stretcher that long, is quite difficult. I had an inflatable mattress to help, but even so the stretchers are very narrow, about my width, and the suspension of the ambulance is hard. I had many collapses and my arms had to be restrained by a blanket so that they didn’t hang uncomfortably down the side of the stretcher. Lying cocooned in a blanket, staring at the ceiling for four hours, being wheeled out to an appointment, then repeating that process home is no fun. It’s not something I wish to repeat in a hurry. But, the two ladies who took us were lovely. A nicer couple of ladies we couldn’t have wished for. They made the journey as easy as possible.

Being loaded into a hospital transport ambulance at Creech St Michael

Another time Mary and I went on a respite break to a disabled hotel in Minehead, its now closed. To get there at the time 2013, we had to hire a Red Cross ambulance. This was before I had my reclining wheelchair. Now that I have one, we can choose respite hotels or nursing homes near railway stations. We can travel by train which means I can recline my chair. It’s not as flat as a bed but works OK for train journeys. At that time, without the wheelchair we were going to Minehead by Red Cross ambulance. They charge quite a lot for their services, fortunately we got a grant to cover the hotel and travel. The crew were very helpful and as with other trips I was on a stretcher cocooned in blankets. If you have ever travelled on the Minehead road you will know that it is windy and a bit bumpy, so I did feel quite travel sick by the time we arrived. Staring at the ceiling, unable to see out, while you body is thrown around causes your brain confusion.

Without ambulances to get people to and from hospital many people would be in a big mess. They make transfers easier, smoother and more comfortable. The use of ambulances for hospital transport for people in my situation is also a great blessing and I am so grateful that we have an NHS which has these services. Apart from the one paramedic I mentioned earlier, who I see as an exception and who could well have been having an off day, the emergency ambulance crews I have met are excellent. They work long hours, see terrible, difficult things and yet remain helpful, professional, caring and understanding throughout. While the non-emergency crews don’t see all the accidents and incidents of their counterparts, they are still hard working, helpful, professional, caring and understanding.

My thanks go out to ambulance crews everywhere.

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Relativity and Time

They say time is relative, was that Einstein? I’m not talking about his theories though, but that feeling of time passing at different speeds depending on how we feel.

You might imagine that time would pass very slowly for me. After all I spend my whole day lying around doing very little. You’d be wrong, time fly’s past, I don’t know why. In fact, at times I don’t know where time goes, I look around and it’s just disappeared. No, I haven’t nodded off, I realise that can make a long film very short or a long journey over much quicker. This is something different, a sense that life is passing by quickly. I realise part of it is age, every passing year is a smaller proportion of my life. So, each day therefore seems shorter. But there is something else too, I enjoy life, I enjoy thinking and learning, I enjoy hearing about things, chatting to people. I enjoy the time I have with my wife Mary. I enjoy spending time with my carers. Going out, even if only occasionally, is interesting and fun. Watching documentaries and films is enjoyable. Maybe that’s why time passes by fast, I am enjoying life.

Time isn’t all fun for me though. I can get fixated on time. We are currently with a very good care agency and a micro both provider who arrive on time or even early. But in the past, I used to get anxious when a carer was due. I am not good at waiting for appointments. So daily appointments are unhelpful to me. It’s better if the carers are always on time and I really know the carer well. But new people and changing times are stressful.

Do you find your life gets ruled by the calendar and clock? So, do I, but additional to that during one of my care visits I might get an unexpected visit. Not every medical visit gets notified to me, some slip through the system. Even ones that are regular, I normally only know a time 20-30 minutes before a visit, when they phone to say they are on route. Which means if they call at the beginning of a care visit, I have a choice, I can say to the person calling “can you call later”, not ideal. Or my carer can start my care and be part way through when they arrive. Obviously with someone like a nurse or doctor that’s not such a problem. But I also get deliveries and service calls from Millbrook wheelchair services and their equipment services. Then it’s not ideal when they phone and say they are on their way and we are mid way through my wash or massage. This can be alright for a delivery, but not for a bed, or hoist service.

Another area time plays a part is when to get ready. We all know, correction, men all know that women take a long time getting ready. Sorry, anyone can take a fair time getting ready to go out. I know not to criticise women; I am surrounded by them every day. Even my Alexa Echo has a female voice.

Most people can throw a coat on fast to just pop to the shops. When I am going out, even if just into the garden it can take 15-20 minutes. I must have a sling put on, the floors need to be covered as we have carpets, the wheelchair brought in to my room, the hoist is then used to move me into my wheelchair. A coat, slippers etc put on. Seat belt, shoulder straps, neck restraint all attached. Then I can manoeuvre out of the lounge into front lobby via kitchen, an art in itself. Mary or a carer puts down a metal inner ramp, this can’t stay in place as it catches on the door. I can then go outside. All this takes a long time. So, we must plan ahead to go out and allow for possible collapses as well in our timing.

Time is very relative; it can pass very fast. It can be difficult to manage. There can be too little of it. But this I know; I am enjoying the time I have.

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Bedroom, dining room, lounge, toilet

Do you live in a caravan? Unless you do, or you stay in one for holidays, then you may find this hard to understand. My bedroom is everything, except the kitchen, in our house. When I came out of hospital into this house in Wellington, the OT wanted to know if my bedroom was accessible. It’s upstairs and a stair-lift, would not be possible. The stairs are too narrow, the angles too tight and the corridor to my bedroom too long and narrow. There are also 3 turns from downstairs to head towards my bedroom. Therefore, only the lounge was suitable as a bedroom for me. No other downstairs room is big enough for my hospital (community) bed, at least not if there were to be any room around it for carers to access me and for my wheelchair to come alongside.

Our lounge once I returned from hospital

Our lounge, in common with most peoples, is the heart of our house. It has the sofas, TV, in our case a piano and it is literally in the middle of the house. You must pass through it to get anywhere, upstairs, the kitchen, toilet or outside. This is the room that has become my bedroom, ‘Grand Central Station’, the seats for our guests, ‘crossroads’, the only place Mary can play her piano, the biggest area of floor for cutting out material when Mary does sewing, TV room, I think you get the picture. But this is also my bedroom, toilet, dining room, reading room, where I can write or watch TV, where I need to rest in the day etc. These two functions do not readily mix.

The quick witted among you will notice I mentioned other downstairs rooms. There are two, both are conservatories and therefore cold in winter and hot in summer. One serves as a craft room come guest room. The other is only big enough as an entrance lobby and utility room, although it does have a sofa in it. One of the sofas my bed replaced in the front room, the other had to be given away. But the sofa in the front lobby is only about a foot and half from the front wall/windows in that room. You can’t easily sit and chat to someone in there. It does serve as a room for people to go to if I am in a collapse. But it doesn’t replace the lounge.

I would rather have a room I can be alone in when we have visitors for a day or a weekend and then choose when to join people. The problem of having visitors for a day or a weekend is that my bedroom is my toilet, all day! It is also where my carers get me washed and dressed in the morning and get me ready for bed at night. That means coordinating timings so that guests pass through my bedroom to the kitchen or bathroom before I use the commode or get dressed. If I need to use a urine bottle in the day, I must ask everyone to leave the room. I don’t find any of that easy, because I don’t like to inconvenience people.

You may get the impression that I don’t like having visitors. That’s totally untrue, I love to see people, although I do have to work within my physical limits. I just find the situation limiting and frustrating. I would think anyone would.

Ideally, we need a property that has a suitable bedroom for me, separate to the lounge. A property that I can easily move around in while in my wheelchair. Of course, when we find such a property, we will be looking for one with a wet room I can access, so that I can have a shower. Bed baths get you clean, but they are not the same as running water.

We keep looking for suitable properties, but accessible properties in our price bracket are not easy to find. In fact, I find it’s very difficult to search for accessible properties at all. Most house sales sites say that you can search for accessible properties, but they don’t break that down into type of accessible property. When you look at the results you can only wonder at their criteria. I have had two floor houses (no lift) come up in searches for accessible houses. Second floor flats (no lift) have also been in the results. Then there are all the properties that look OK on the outside, but when you study the floor plan you can see they would not suit a full-time wheelchair user. I have yet to find a way to search for properties for full-time wheelchair users of power chairs. There is a gap in the market, but I guess it’s a small market.

My bedroom is our everything except cooking room, and that needs to change. Our house is bigger than a caravan, but the concept of everything happening in one area is the same. Next time you are on holiday in a caravan think of me. Of course, you will have the choice to get up and go outside if things become noisy or you need a bit of space to yourself, whereas I can’t. You will also be able to nip to the toilet when you need to, without needing to announce it to everyone. Oh, the joys of disability it just keeps on giving.

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It’s a Smart life

Back in 2014-2015 I had a Mother. OK so we all have Mothers, even if we’ve never known them and I’ve had one since birth that I do know. But this Mother was a 6” white plastic electronic unit with a big wide bottom and a narrow top, blue glowing eyes, red lips and a tendency to make weird noises. Don’t say your Mum’s like that, it’s rude. My unit was a Sense Mother, one of the first the Internet of Things (I.O.T.) smart devices. From such humble early devices, it’s a surprise the idea ever took off. My Mother was a crowd funded device, made in France and unfortunately the company has now gone bankrupt. Probably because Sense Mother didn’t do enough things to make it useful.

The idea sounded great back in 2012 when they first talked of developing it. The concept was of a smart unit that would monitor your life and give you prompts. The slightly creep advertising talked of a mother better than your own. It certainly wasn’t that. But as someone who needed prompting to take tablets, monitor temperatures and wanted to know when people came in and out it sounded great. In practice the reality was more limited. Little devices called cookies were attached to things you wanted to monitor and when they moved the Mother unit registered their movement and checked the temperature around them. It’s ability to register movement was limited in distance and type. So, I could know if I had picked up my tablet pack and I knew when Mary returned home by the front door monitor clunking. But beyond that it really only enabled me to monitor temperature in different rooms.

Fast forward to 2018 and the I.O.T. had leapt forward. Amazon Alexa devices, Hive heating, smart plugs, smart cameras, smart switches all connected and controlled through the Internet. They could be controlled via voice or directly on an app. Enabling me to radically improve my setup last year. So that now I have Amazon Echo devices in all rooms. The one next to me even has a small screen. I can use my voice to call any or all other rooms. Which means wherever Mary or my carers are (including the garden, I have a portable) I can request help. If I don’t know where they are, I just broadcast everywhere.

I can view any of my external or internal cameras by requesting the relevant one with my voice, “Alexa show front door”. I also have a Fire TV stick, so that I can display the front doorbell come camera on the TV. I can even talk to a person at the door. The Hive heating gives me control of the heating, “Alexa change the heating to 20 degrees”. Smart switches and plugs give me control of some lights, “Alexa all lights on.” I have control of devices around the house. Before I get transferred into my reclining chair, I can turn on my ripple cushion by voice. When we go away, I can turn off the ripple cushion on my bed. There are several switches that cannot be changed as they are too complex and therefore too expensive. The ones I have changed have been presents for Christmas, Father’s Day and my Birthday. The Hive heating and Alexa were a grant to give me control of the heating from my bed. Most of the smart cameras I won in free competitions. That’s how to have a Smart house cheaply.

One of the big frustrations of limited mobility is lack of control. Smart technology gives me back at least a little control. I would love to have electric curtains/blinds and even door controls, electric door locks do exist, but those are beyond my means. I would also love a smart hoover and a smart mower but the same applies. There is a lot of smart tech out there that I will never be able to afford.

On the none smart, but useful to control side, I love the fact that I can operate the control on my hoist and the control on my profiling bed. It’s also wonderful when I am in the park or a large building so I can operate my own wheelchair. A lack of control is not pleasant. I am so pleased to live in this modern age with modern technology. The speed of technological advance in the last few years is amazing.

I know a lot of people worry about smart devices monitoring their conversations or smart cameras monitoring their actions. For me the control and convenience outweigh the loss of privacy. Let’s face it, I don’t get much privacy in my life anyway. So, wherever I can regain some control I will.

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A basic misunderstanding

“You’re the client.” I have heard this said to me several times by care companies as an explanation of why the focus is mainly on me. Mary and I are a couple and the care allowance we have been granted was granted to benefit us both. It is to enable me to be washed and dressed, but also to give Mary a break. Both of those factors are mentioned in the care statement.

One of the biggest misunderstandings I have come across in care is the idea that I am separable from Mary in care companies’ dealings with us. This can cause huge problems and is the main reason we have seen certain carers as more suitable than others. A carer who ignores Mary is totally unsuitable. As with most people, I may enjoy being the centre of attention, but I don’t enjoy my wife being ignored. You would not believe how blatant and rude it can be. In the past we have had carers who have not even said hello or goodbye to Mary. They respond almost in monosyllables to questions she asks. We are a couple and even though I am the client, my care fully includes Mary. Any care for me must fully involve Mary. If she is in any way excluded or ignored or if her wishes are railroaded, the carer is unsuitable.

If a carer takes over our home, putting things where they think best, without asking Mary, that is only going to cause problems. Imagine coming back and trying to find your coffee cup only to find it has been put in a cupboard you never use, out of your reach. It can negate the benefit of a break if too much hassle is involved in finding everything when you return. It is always best to ask. Mary tends to say to carers “if you don’t know where it goes, leave it on the side, don’t guess.”

Another area that is overlooked is Mary’s role as my main carer. Because of this role, she always asks the carer as they leave if everything is alright. The purpose of her question is the same as that of a handover in a care home. Are there any issues she needs to know about? You would be amazed how many carers have said to Mary “yes everything is fine.”, having just filled in their care notes details of a problem they’ve found, a mark or bruise that needs monitoring. Because they obviously mention it to me, Mary finds out from me. But if I had dementia she would be in the dark. It’s a big problem and one that some carers need to be more aware of. With couples, where one is the main carer for the other, that partner needs to be kept informed of any issues.

We are slightly unusual in terms of care. I am younger than many of the people the agency we use cares for. Perhaps if we were both much older things would be different, but I would assume even in that case the partner would want to be kept fully informed. I would also assume no one would enjoy having things moved to places they couldn’t find them.

Let me balance things now. The current carers we have are excellent. They fully include Mary and do not leave things in places where she can’t find them. They keep her informed and communicate well. That is why they are the carers we have stayed with; they are very good. There are previous carers we have had who have moved on to other companies who we keep in touch with. They were every bit as good and we miss them.

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“Had a good sleep?”

“Did you have a nice sleep?”, he said it as a jokey comment, meaning to make light of the fact I’d just come around from a collapse. Words very similar to this are said to me all the time and everyone thinks they are being light. I suppose some cases there’s a genuine misunderstanding and they really think I’ve been asleep. (see photo)

I used to watch thrillers where one of the main characters was dosed with a paralysing agent. They would be lying on the floor unable to move and watch as a murderer entered the room. They would be completely at the mercy of the murderer. That sense of being helplessness in the face of danger is not an uncommon fear, we experience it in dreams, being frozen in the face of danger. In all cases it is very unpleasant and not something anyone would crave.

It is similar, if not identical to what I experience. It was when I was first struck with what I now call ‘collapses’, that first I experienced the reality of this. I become like a rag doll, unable to control my movements, not a rigid paralysis, but a complete loss of voluntary muscle control of my arms, legs and neck. My eyes are also closed. I can breathe and with some effort and concentration, talk, I have gained better control of this with practice. Over time I have realised that I can breathe and talk because my core body muscles are not affected, just everything attached to my core. I should just point out that danger, pain, discomfort or shock do not cause my muscles to move. One other thing that demonstrates this is not a choice (me just deciding not to move), but something neurological is that my autonomic reflexes are muted to non-existent when I am in a collapse. I know this because they have often happened when doctors are around and can run tests. This is a very rare condition and according to doctors I have chatted to, know of only a handful of people this happens to. Because of the sudden onset of these episodes, they are classified as fits or seizures and I am not allowed to drive or operate my wheelchair on a public highway or path. It’s also why I have bed sides and a supported wheelchair. I have written elsewhere about this (The cot sides).

When we sleep, we are obviously vulnerable, but we are also unaware of that vulnerability. In a collapse I am fully aware. I am completely conscious. So that if I am lying or sitting fully awake in a busy environment hearing activity around me and not knowing what might happen it is very unnerving. That’s why it took me so long to venture out. I used to choose to stay inside. It was safer, I recovered quicker because I was less anxious of what would happen, and it was less tiring. I had to learn to cope with the anxiety to be able to face going out. I learnt to control my fear by meditation, breathing deeply and focusing on God. In my head, I pray, sing Christian songs and sometimes just take my mind on imaginary journeys, all to distract myself. This doesn’t take away from external jolts into reality that can cause me a sudden and unpleasant shock. Even something as simple as someone suddenly grabbing my arm to say hello is shocking when you don’t see it coming. In my wheelchair if a child decided to switch on the power and operate the chair you can imagine the consequence. Hence, when I am in a collapse in a public place Mary or my carer stays next to me. In a park or garden there are extra nuisances, wasps, bees, even flies. Have you ever had a fly crawl on your face and been unable to brush it off? Or what about a bee? I have, it’s not pleasant. If you start to think about it, you will realise why I must have someone with me. There are many hidden dangers if you are on your own in a public place and unable to function. There’s also the added possibility someone might phone 999 if I was unattended and looked unconscious.

Sleep is refreshing and leaves you feeling ready for the day. After a collapse I come around with achy muscles and often very relieved it is over. They are not in the least comparable. That is why I don’t really like it when people say, “had a nice sleep?”

I realise that it must seem as if I have many criticisms to make of what others say. I am just as likely to say the wrong thing. I only point out unhelpful comments to try to educate and help people. I have had things pointed out to me many times.

Here are some of my classic blunders in the things I say. Taking the credit for what others do is a big one for me. Very often when Mary arrives back and is chatting to my carers to catch up, I will chime in with how “We, have washed up. We have hoovered. We, have tidied this or that.” The funny thing is the carers never point out I was just watching.

I am far too quick to criticise when I don’t like something and far too slow to thank Mary or my carers. It’s easy when you are limited to get focused on yourself, your world does get reduced, so in a way it’s understandable. But that’s never an excuse. It’s because I realise that I need to learn and get better that I also share things that may help others.

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Me in a collapse at RCH, Dawlish. You can see why people think I am asleep.

You’ve had your chips

Chips, chips and more chips. I really love a bag of chip shop chips. After her stroke a couple of years ago Mary must avoid fatty food, so I don’t suggest that we go out for chips. But when Mary goes to visit her dad and I have a carer for the day my first thought is ‘chips’. Well maybe it’s my second thought after getting ready in the morning.

There are two places locally we go to eat our chips. The Quaker garden, a little quiet garden behind the Quaker meeting house, off Wellington High Street and Wellington Park. Often, we will eat chips at the Quaker garden and then carry onto the park. That way the chips stay hot as the chip shop is near the garden.

Wellington park, in case you’ve never visited, is a great place for a wheelchair. Getting there is not so easy. Wellington High St is an obstacle course and whether you take the narrow alley by Lloyds bank or the car park it’s a bumpy ride. Going across the path by the football field and cricket club is like a potholing trip. That is if you are trying to avoid potholes. There are some places where that’s impossible and the articulating suspension on my wheelchair gets a good workout. The tiny car park opposite Wellington Park is best to avoid at school arriving and leaving times. It’s not big enough for all the cars that try to squeeze in and it’s really a case of taking your life in your hands when weaving through the cars.

Once you enter Wellington park you feel you have stepped back in time. Of all the parks I have visited it is one of the prettiest. It’s also one of the best used by the greatest age range. There’s a family feel about the park. Some parks feel like spaces for the young or old, Wellington park feels like a place for all. The borders, though a bit of a blast from the past, are beautiful and well kept. There are winding paths, surprises around most corners. A bandstand that has live music for three months every summer and many events over the year. There is also a large and beautiful pond with a Chinese bridge at one end next to a waterfall.

There are trees to look at and even climb, a classic fountain and a fun and almost invisible feature, a ha-ha. If you don’t know what that is, then think invisible fencing. A drop off in the grass to give you an unimpeded view from park to countryside. In these days of health and safety gone mad, it’s survived without fencing.

The best and most wonderful things about Wellington park for me are that it has new tarmac paths, they are super smooth and I can operate my own wheelchair in the park. It’s quiet enough at the times we go to not risk the safety of others.

There is an old fashioned four-sided covered seating hut. One wet day I was visiting the park with a carer and we decided to shelter there. The lowest part of the shelter still had a 2” step up to it. I positioned my wheelchair and powered up it, the wheelchair lurched up and the front two of the six wheels flew in the air, the whole chair seemed to fly. It didn’t really, it just felt that way. With a bang the front wheels hit, and the chair stopped about an inch before the seat. I hadn’t noticed what a white complexion that particular carer had before that moment, nor did their complexion seem as white later on.

The other really nice feature of the park is a beautiful house built around 1900 that is still lived in by the park keeper and family. I have seen a glimpse inside through the front door and I hear the inside is really lovely.

Mary and I go regularly to Wellington park and I go there when I can with my carers. It’s a little haven of peace in the middle of Wellington.

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Whose been eating in my bed?

There is a mystery I have yet to solve. Where do the crumbs come from in my bed? Some people try to suggest I am to blame, I know that isn’t true.

Cornflakes, crisps, bits of rice, crumbs of bread, even a piece of cheese, have all found there way into my bed. I can only assume that when I’m not looking, an army of little munchkins picnic on my bed in a very messy fashion. You may well assume it’s me, eating in my bed and dropping crumbs left and right. Funnily enough that is exactly what my carers say. You could blow me down with a feather at the suggestion. Of course it’s not me.

I will give you an example. The other day one of my carers was giving me a therapeutic massage and she stopped while down no my back, saying, “there’s a crisp on your back.”

“I wonder how that got there.” I said.

You won’t guess in a million years her answer. She suggested I’d been eating crisps in bed. As if the mere fact of eating crisps in bed, which of course I do, would cause them to drop on my bedding. What a foolish notion.

There have been similar suggestions for all the other crumbs. I am certain that none of the food I eat in bed goes anywhere other than my mouth. I never see any of it fall, and if I don’t see it, then it can’t have happened. Isn’t that a general principle of life? I’m sure I’ve heard people use that excuse before. Besides the crumbs I see in my bed look nothing like the food I eat in my bed. They are tiny crumbs, the food I eat is much bigger.

Forgive my little bit of silliness, I find nonsense a good way to combat all the stresses of the day.

Me not dropping any crumbs

“You can do it again.”

(A theological musing about healing)

“You were on your feet once; you can do it again.” What great, encouraging words. As if somehow, I had anything to do with God healing me in 2015. There is almost a hidden suggestion that it involved some positive thinking or right attitude on my part. In reality I was neither waiting nor ready to be healed when it happened. God just did it. I lacked faith at that time, I was quite distant from God in 2015. In fact, I would say the only person who needs faith with payers of healing is the person praying. There was one point where my faith kicked in. That was once I knew and felt the reality that I had been healed. Let me repeat that in another way for clarity. Once I knew, absolutely that something had changed, then I acted in faith and stood up. At that point I had a choice, act in faith and accept that change or act in disbelief and don’t.

There is a lot spoken by some Christians about “naming and claiming” healing. You cannot claim what you do not have. That would be folly and stupidity. Like a blind man claiming he could see when he can’t. If a blind man is healed, he knows it because suddenly he can see. That’s the same with all healing. When you are healed, something changes, and you are healed. Not because you name the healing and claim, “I am healed, and I am believing it.” But because it actually happens. The problem comes, because it’s easier to say someone else lacks faith, when they are not healed if you pray, rather than accept the truth. When we pray for someone to be healed, either they are healed, or they are not. It is the faith of the person praying that is significant.

Don’t mishear what I am saying. God can do anything, and He does amazing things. God heals today in the most incredible ways that are beyond all medical explanation. I am only talking about how faith, the faith of the person praying is so significant. Further I am emphasising that the people prayed for don’t have to be full of faith to be healed. Jesus raised the dead; they certainly didn’t have faith. Jesus healed those at a distance who didn’t even know he was praying. Friends brought a sick man to Jesus. Jesus picked people from a crowd to heal. If you are sick or disabled it will not be how much faith you have that makes a difference to whether you are healed.

When Jesus prayed for people, everyone was healed. That is no surprise, his faith was so great. When the early Church prayed for people a similar pattern, because of their faith. If we do not see as many healings, it is our faith, the faith of those praying, not those being prayed for that needs to increase. I believe that is why we see fewer healings today. We as a Church are less full of faith as we pray for healing. But I also believe we are in a time of partial revelation of the kingdom of God. There is a time coming when there will be no more death, sickness or war, but now we only see glimpses of that coming time. Do not condemn those who are sick or disabled when they do not leap up when prayed for, it is not a weakness in them. Pray instead to Jesus that he grants you more faith as you pray.

For me I was able to walk after years of not being able to. I did not suddenly gain extra faith on May 3^rd, 2015. Mary was granted extra faith that night, as a gift of God and as she prayed, I was healed in Jesus name. This is not ‘faith’ healing in an abstract sense. But healing by God in Jesus Christ’s name.

When my ability to walk stopped in January 2018 it wasn’t a lack of faith and if God gave me the ability to walk again that would not be because I had gained more faith. I don’t know why my ability to walk ended, but I don’t have to understand. I just accept the healing as a gift that lasted two and a half years. God didn’t say this is until you die when he healed me in 2015. If you think about it, no healing would ever be that. As we age our bodies become frail and weak, so sickness always returns.

When people say, “you can do it again.” You can now see why I see that as folly. I did nothing the first time. If people say well done, they have missed the point, it was all God, not me.

I find it easier not to focus on whether God will heal me again. It is better to live for now, in the gift God grants us than in a hope or expectation of what might be. Living in a future hope of healing only leads to frustration. If I spend my days hoping I will be healed again then I am not embracing and enjoying now. Today is all we are promised, tomorrow is a possibility, but not a definite. Live in the moment, knowing and trusting God to provide and care for us. That’s what I try to do. I wrote before about how I find peace and joy by trusting God and seeing what he gave me as a gift. To focus on what I do not have would just negate that peace. I am happy to be prayed for and perhaps God will again grant me the ability to walk. But my life can still have meaning, joy and peace as it is.

How can it be OK?

It’s an odd situation we are in. On the surface everything has gone wrong. I lost my independence, mobility, ability to work and hadn’t even finished the work on the house we own. Yet I am at peace and joyful, I won’t say happy because happiness is based on what happens. Joy is not based on circumstances. You can feel joy when everything goes wrong. You can feel joy even in the hardest of circumstances. You can be at peace in the midst of difficulty. That’s what this blog is about a positive viewpoint on a difficult situation. How can things be OK, when everything is wrong?

The situation we are in doesn’t have to rule the way we feel. Feelings are deceptive things anyway, they so easily rule our hearts and minds. The one thing I have found that is unchanging and sure is my faith in God. I can hear all my non Christian readers turn off here and stop reading. But persevere a little longer. After all, I am saying this as someone who has truly tested this out. So maybe I have something worth hearing.

Faith is not religion, religion is not faith. There can be faith in religion but most often religion is just a blind obedience to a set of rules. A legalistic obeying of laws and statutes expecting a positive result. I am definitely not talking about that. You will not find peace and joy that way, because ultimately that is empty. I am talking about living faith.

What I have found to be true is that knowing a personal God, who also knows you and has a relationship with you transforms your life. Faith in God is life changing.

Forget harps, old men with white beards or dusty old books. I am talking about human relationship. We all understand that and feel it’s lack when it’s missing. God didn’t just create humanity and leave us to it. He saw the mess we were making and came into the world he made as a human being. Jesus was fully human and fully God. He wasn’t a blueprint of a future kind of human. He wasn’t a man pretending to be God. He wasn’t an angel. He wasn’t a prophet. He was the one and only, unique son of God. Fully God and fully human.

What on earth am I talking about!? God as a human. Am I mad, don’t I realise how crazy that sounds. Yes I do. There are many incredible and crazy sounding things in this universe that God created. Particles of matter that can be in two places at once. A force that cannot be seen or fully understood and yet holds everything together, gravity. Something that fills the gaps in the whole universe, dark matter. A perfect balance of push and pull at the big bang that prevents the universe collapsing. The more you look at the universe the more amazing and puzzling it is. I don’t have to be able to explain everything to know truth.

I know what love is, not because I can analyse it. I know what compassion is without pulling it to pieces. I can feel the benefit of mercy without fully understanding it. God loves us, God has compassion on us, God shows us mercy. We may not understand his reason or how he does it. We may not be able to explain how he became a man in Jesus. But we can know it is true. We can feel the transforming power of his love.

Before I realised that truth I was a loud voiced mocker. I see many such mockers now on facebook. We tend to mock two things, things we don’t understand and things we fear. Often our fear is that it’s true. That was the case for me. The more loudly I mocked the more it expressed my desperation. So I don’t feel anger at those who mock. I understand something of what they might be feeling. I know God loves them anyway.

Let me return to why I am at peace and I feel joy. It’s because I know God loves me. Jesus has made that known to me. But how you may well ask.

“Sticks and stones may break my bones but words will never hurt me.” And, “A rose by any other name will smell as sweet.”

Two really well known but equally untrue quotes. Words are very powerful things. Ask any psychologist, in fact ask yourself. What words said to you as a child still ring in your head as an adult.

Jesus is The Word of God he embodies God’s Word but he also spoke it. When we read God’s Word as recorded in the Bible and we receive Jesus the living Word into our lives then God’s transforms us. For some that transformation is instant and dramatic for others slower and less dramatic. But everyone who accepts Jesus Christ into their lives will be changed. The Word of God has the power to change our lives.

It is this change that means I can cope in the midst of disappointment, despair and seeming hopelessness. Because with Jesus there is hope and a future.

Some of you will know that in May 2015 (see video below) I had a miraculous healing, one that the doctors still can’t explain. For about two and a half years I could walk, and even do work on our current house. When in January 2018 that ended and my health again declined, I was devastated.

You may be aware that the most effective form of torture is to stop torturing someone, pretend to let them go and them re imprison them and start again. Doing this can completely destroy a persons spirit. I felt a bit like that. I had been free, able to walk and work, then it was taken away again in an instant. I reeled at the unfairness of it. I shouted at God about it. He is big enough to take that. When I had calmed down I felt I got an answer.

God had not taken anything from me. On the contrary He had given me a gift. Two and a half years of being able to walk again and being able to do normal things. A wonderful, brilliant gift. Far from being angry at the loss, I became thankful for what I’d enjoyed. I started to enjoy re living what I had done. Then I realised all the blessings God was giving me in this new season. The amazing carers God was bringing along for me to meet. The opportunities I had that previously I hadn’t enjoyed. Everything looked different and my joy and peace returned.

Whatever is thrown at us we can find peace and even joy. You might think it’s an empty joy based on nothing. But you’d be wrong. I have a depth of strength and durability to my faith that stands up to the rigours of life. Faith means you can put your weight on it and it can take your weight. My faith in God can bear the greatest testing. I can put all my weight on him. My faith is stronger than a reliance on material things. They come and go as I know all too well. God is unchanging, He is faithful and true.

To a lot of people Jesus Christ is a swear word. To me he is my way, my hope, and my life.

I am aware that I raise as many questions as I answer. One place that’s good to go and explore those questions is a local Alpha course. They are free to attend and run all over the world.

Find one near you https://alpha.org

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Me able to walk in 2015 following a miracle.

1st Day on my feet in 4th May 2015 (the 2.5 years of being able to walk)

Planes, trains and automobiles

I discovered the other day that it’s physically possible to fly in my condition. I don’t yet know if it’s practical, but it’s something airlines can do. Apparently when a wheelchair user can’t transfer from their chair by standing or walking there are two options, depending on the airport. 1/ Some airports have hoists that take you from outside the plane to your seat. 2/ Some airports use a few people to physically lift you from your wheelchair to your seat. No extra cakes before your flight then eh? Of course, in my case that doesn’t answer the problems of what happens if I am in a collapse at the point of transfer. I can’t be hoisted when I’m like a rag doll. Or whether I could sit in an airline seat, would it be supportive enough when tilted? I could certainly take a pressure cushion and my neck brace. First class would work, but prices are crazy. I won’t give you the nitty gritty, but as I can’t access a toilet on the flight, I do have a way to cover that, external catheters etc. Planes then, while very tricky might be possible. I have never tried it, but they obviously aim to make themselves accessible for people in my situation. Interesting as I had assumed the only way to fly would be on a stretcher by purchasing several seats and therefore well beyond my means.

I have tried the train a few times. It’s an interesting experience. With train travel, if you want the easiest trip you need to book assistance at least 24 hours ahead. Then you are told to arrive 20 minutes before your train. On a cold day, if there is no waiting room that is a nuisance. The reason is so that the station staff can get ramps ready and plan where you need to be. I have only travelled between Taunton and Dawlish, with the occasional enforced stop at Exeter St David’s due to bad weather. Taunton is a great station, large lifts and plenty of helpful staff. Exeter St David’s is similar. Dawlish is a 2-platform station, the staff are great but not always there, so you can only travel at certain times if travelling to Dawlish. Taunton to Dawlish gets you in on the seaward side platform, the only way off that platform via wheelchair is across the railway line, via locked gates. You must be escorted by railway staff. It’s a busy line and we have had to wait 10 minutes to cross at times. As Dawlish is right next to the sea, it’s vulnerable to high waves. When high waves crash over the line they don’t allow wheelchair users to cross the line. Something about not wanting them to surf their way across. Therefore, the rail company lays on a free taxi from Exeter for any wheelchair users. When the line was damaged in the storm and a replacement bus service ran from Taunton, they laid on a taxi from Taunton for me.

Dawlish train station in distance by the sea

One time we were on our way to respite at the RCH convalescence hotel in Dawlish and had a train booked. A storm hit before we travelled and we got a phone call from GWR to say we would be taken off the train at Exeter and taken by taxi to Dawlish. We arrived at Exeter and waited to be taken off the train. No one came, but the train stayed in the station. Eventually a rather hassled looking couple of train assistants arrived. Apparently the person who booked our assistance on the phone had put the wrong carriage on the station system. Then just to add to the confusion, they found in that carriage an elderly lady with mobility issues who was going to Dawlish. So when they had asked about who was needing assistance she was taken to be the one in need. They got her off the train into the cold and wet. It took a few minutes before someone realised it was meant to be a wheelchair user they were assisting. They got her back on and came in search of me. The train was held up about 15 minutes.

Our problems were not over there. Outside the station we were taken to our taxi waiting in the pouring rain and icy cold. It was too small for my wheelchair even though I had told the guy on the phone I needed a big taxi. The driver tried to load my chair 3 times all while leaving our luggage in the rain. I have to hand it to GWR, they stayed with us and when the taxi failed they took us to a warm place, ordered a bigger taxi and made sure it took us all the way to our hotel, no extra cost. They rescued a difficult situation, even though they had caused it.

The lady who had been removed from the train was staying at our hotel and unfortunately caught a cold later in the week. Many people on the train were staying in our hotel and had wondered about the delay.

Trains themselves are improving. In the past they used to lay a metal ramp onto the step of the carriage for the wheelchair to travel up and down. I guess some must have fallen off, which is no surprise to me. As I never felt safe on those old ramps. I used to watch them lay them on the step and make sure they were well in place before I moved. The new trains have a brand new and rather slow system. The automatic doors are locked, a plate is flipped out and the ramp clips into two holes. Therefore, it cannot slip. I watch the process equally carefully to make sure they engage the toggles in the holes. The ramps themselves are not very wide, neither are the doors. But the new trains are massively better than the old. On the older trains I could not always get into the wheelchair space, I sometimes had to stay in the corridor. The alleyways were also very tight to turn in. On the new trains everywhere is wider and easier to access. On some of them I have actually been able to access the toilet.

On a train in First Class (Upgraded as second class off platform)

One extra bit of fun with trains is platform length. For some reason they always put disabled carriages at the end, normally one in first class at one end and one in second at the other. Dawlish station can take a 9-carriage train on the seaward side and an 8-carriage train on the other. So, when we are travelling home, and the train is 9 carriage it depends which end has first or second class disabled as to which class we are put into by the booking service. If they get it wrong, or the dispatch change it, we get moved. We have often travelled first class with a second-class ticket. I guess there have to be some pleasant aspects of disability. I had never travelled first class before, but I do enjoy it now. The snacks, drinks and sandwiches all being free is a great bonus.

Motor vehicles have to be specially adapted for my wheelchair. Vans need a lift or ramps, plus clamping points and cars or taxis need a ramp and anchor points. My wheelchair is so long and high that not every taxi can fit it. It’s a bit of an art being anchored into a taxi. They attach long seat belts to my front anchor points, then I drive the wheelchair in as far as I can just before my footplates make contact with the seats in front of me. To make these lock I should really go back a bit, but my chair is to big for that, so they stay a little loose. Which means the front of my chair can lift about 2-3” on a big bump. It feels a bit hairy. The driver then locks the rear two anchor points of my chair with ratchet clamps. This prevents it moving at the back. If the vehicle crashed, I would not be able to move forward. He also presses a switch to lock the two front seat belt that have retracted as I drove in. I have a car grade seat belt in my wheelchair, but they also add an extra one.

My view in a taxi

Vans vary a lot in how they latch my wheelchair in. In some I have room to recline fully before being latched in. We discovered that the front latching points are on the moving part of the tilting mechanism, so I need to tilt it before they connect the straps or I pull them out of the floor. Vans are very bouncy and a problem I find is being in a collapse while in a van my arms can hang down very uncomfortably. Mary therefore sits next to my wheelchair so that she can hold my arms if necessary. If I set everything up right ahead of time, tighten my shoulder straps, remove my head pillows and have my neck brace on, them my neck stays on the head rest. But once I had my shoulder straps too loose and my head bounced off the neck rest and was hanging by the side of the neck rest. Mary couldn’t reach and we were on a dual carriageway. The driver pulled off at the next exit to rescue me. I still had a very sore neck for a few days. I have mentioned before that exiting a van or minibus involves a big trust exercise on my part. I am not able to see backward, so whether I drive the wheelchair under guidance or whether it is driven I have to trust the person in control. Remember the ramp I reverse down is only a few inches wider than my wheelchair and the ridges at its side are not sufficient to prevent my wheelchair driving over it. I much prefer vans with lifts.

View from my wheelchair in the Slinky accessible transport bus

One thing makes me laugh every time I am loaded in a minibus. The rules of most minibuses say the driver or an assistant has to guide or push the chair up the ramp and back down. This rule ignores power wheelchairs. Modern ones do not have a motor disengage, or at least not fully. Even if they did, my chair with me in it weighs 250kg, that’s a quarter of a metric tonne. Good luck pushing that up a ramp unaided, even better luck preventing it falling. The most ridiculous sight was one respite centre that had a young girl of 17 who was instructed to stand behind the chair to stop it falling. I pointed out, if it fell she would just be crushed. I don’t understand the logic of some places.

Buses are a complete non starter for me. I tried one out once. But the space allowed is too small for my type of wheelchair and the turning space too tight. It has put me off trying again. Coach companies say they cannot accommodate my wheelchair.

I am always glad train companies are so helpful and that we can travel in taxis and accessible vans.

Apparently there are hoists available that can be fitted to ordinary cars, but they cost £3000 and are fitted to one car at a time. My wheelchair would be far to big and heavy to transport even if my friends or family had such a hoist, which they don’t.

Travel is a much bigger adventure when your mobility is limited.

Waiting at a train station

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