There are mornings that I wake up from a lovely dream. One in which I am walking, running, pain free. As I wake and turn on a light (by voice), the pain hits me first, normally through my eyes. Did you know, it’s not just love that hurts, light hurts too? My head joins the party next and I have not been at a party drinking the night before. So no excuse and nothing to blame. If my body is in an uncooperative mood (it normally is) it stays still for quite a while. When it does deign to move, it makes it’s presence felt. I guess it doesn’t want me to miss out on congratulating it for the effort of moving.
Once I have turned over. That is a big task in itself. Reached for the bed control and sat the bed up a bit. I skipped removing the CPAP. That’s the bit of equipment that keeps me breathing at night. Anyone with sleep apnoea will know about that. I then look around. No point looking at my tablet computer yet. My eyes can’t focus first thing. Just as well I have a good imagination, I just think.
It’s at times like this; every morning. That I have often contemplated the words of that song. ‘Row, row, row your boat.’ Actually, it’s not that bit I contemplate, that would be silly. I think about the words, ‘life is but a dream.’
As a Christian, I know life isn’t a dream. The Matrix is a great movie, but it’s just fiction. Life is reality, dreams are dreams. But as I transition from the sleeping/dream world into a rather painful and limited reality, I do muse. I muse about how nice it would be if this real world were the dream. If the dream world, of walking, running and being pain free were real.
I did not write this as a ‘feel sorry for me’ piece. Nor is it meant to be maudlin. But, if I never write the truth about being disabled and ill. You will think it is all laughs. I smile and laugh because I make that choice. Every morning as I lie in pain, I make that choice. Often I say to myself, ‘come on Michael, pull yourself together.’ I call myself by my full name when I want to chivvy myself along.
I don’t look down on those who can’t do that. Others suffer far more than I. We can never know what another person is going through. Don’t judge someone because they are angry with being ill, disabled or limited. I can’t know the pain of another; neither can you. I can’t understand what you are going through; it could be far worse than me.
If there is one take away message I would want to give, it’s this. I know that we all have struggles in life. Whether we are ill/disabled or not. Life can be hard for us all. Especially at the moment with all the financial burdens and stress.
Be kind to one another. Be gentle and caring. We all need the grace and strength to get through each day. Let’s help each other through it.
You are probably expecting an amazing fact. Not an unreasonable assumption. After all, I have brought you blogs on why we don’t live forever. How to keep things brief. The nature of the universe, among other incredible facts. But no, that is not the purpose of this blog. What is it’s purpose? I wish I knew, I started it so long ago, I’ve forgotten.
I’ve remembered. The brain is getting slower with age, but it is still sharp… ish. When people ask to swap with me in a wheelchair. Which they do quite often, when they see me sailing up a steep slope. Did I tell you that my power wheelchair can go on water? Well, not literally sailing of course. But powering up a hill effortlessly. For me that is. My wife Mary, who is my full time carer. Has to walk alongside up the steep slope; or behind.
She is actually operating the controls. My chair is dual control (rear and side). I had to sign a bit of paper to the NHS saying, on pain of death. Well maybe not on pain of death, but it was a serious bit of paper. That I would not operate the power chair outside. Because I lose muscle function with very little warning. Those spoil sports didn’t like the idea of me powering into the road, or a crowd of people. I suppose they have a valid point.
As an aside, if Mary is behind my high backed power chair, people don’t see her. They assume I am controlling the chair. As you know, I do not have a sense of humour. So I never take advantage of that misunderstanding. You will never see me closing my eyes or looking all over the place, while my big heavy chair, heads towards a crowd.
If Mary is operating my chair from the control on my left (the one designed for my use in the house), that causes confusion too. She can only do it on wider pavements. People approaching us often assume she is just walking beside me. They are unaware that she is operating the chair. They walk straight at her, expecting her to move out of the way. Not just at her, but looking to pass between her and my chair. She has to let go of the controls and bring us to a sudden halt. This has happened when crossing a road; not my favourite experience.
Where was I. Yes, people saying they want to swap with me in my wheelchair, especially on a hill. I am not alone in this. Most wheelchair users get asked this. You might think, ‘so what?’ or ‘what’s the issue?’ you might even be thinking, ‘I’ve done that.’
Let me put it into a form that might hit home. If you wear glasses and someone said, ‘wish I had those?’ when they couldn’t see a distant object. Or you wear a hearing aid and someone said, ‘wish I could borrow that,’ for a short time they can’t hear a distant voice. Or how about you have dentures and someone at a restaurant, struggling to chew their meat says, ‘wish I could have your dentures.’
Those are silly suggestions, because its a silly question. Wheelchairs are not to get us up a steep hill. They are an all encompassing fact. My answer to anyone who says, ‘I wish I could swap with you,’ is this: ‘sure, you can have it all. The lifetime of limitations and the care needs.’ You don’t pick and choose a wheelchair to help you up a steep slope. It is a frustrating need. Just like you don’t choose poor eyesight or poor hearing. You don’t choose to lose your teeth. If you need a wheelchair, you would rather not. Having someone suggest a swap is fine, if they really wanted to swap everything. But of course they don’t.
An all encompassing fact, means just that. Limitation, illness, disability, differently abled, however you want to describe it. They are not a choice. Someone puffing up a hill and seeing, what to them looks like an easier option, is saying, ‘I choose an easier option.’ Disability, illness, limitation is not it. Perhaps they need to exercise more. Or if that isn’t an option, and they do need mobility help, they shouldn’t look enviously at those in more need, they need to get help themselves.
Limited mobility is not a choice, it is an all encompassing fact, that we end up with by disease, illness or an accident.
What a positive world we live in. Apparently I am not disabled, I am differently abled. I guess being negative is seen as… well… negative. One day, Bam! I was hit in the face. Not literally you understand. I have not been attacked by people who disagree with my blogs. Although that might well start after this. Then, Wham! Not the 80’s pop duo. You see I had an epiphany and it’s not even Christmas.
My wham, bam, epiphany came last year actually. Don’t accuse me of rushing of a blog every time I have an idea. It was when we moved to our new house last summer. I would say our beach view house, but I don’t want to make you jealous. Too late, I said it. I realised, We can be, enabled by our environment. Let me explain:
We moved in to this new build house. Now I need to pause a moment. This house is M4, no it’s not in the middle of a motorway. The M4 category of housing is an accessible housing category. It means that a house is built to be wheelchair visitable. That means exactly what it sounds like. You are meant to be able to visit it in a wheelchair. The government have a strategy to make all new houses M4… eventually.
An aside here, I cannot visit the majority of my family and friends. I can think of one house that might (I haven’t yet tried) be accessible to me; in part. You might be unmoved by that. But imagine being unable to visit your family and friends. Got that in your mind? Would you find that hard? I know I do.
Having moved into this house with its wide doorways and corridors I noticed something. I could access the whole downstairs. Wow! You’re thinking, access all of downstairs. What’s novel about that. Sometimes I think everyone should spend a year in a wheelchair. The world would change pretty quickly. I imagine blind people may wish everyone could experience blindness for a year. Or deaf people may wish people may wish people could experience profound deafness for a year. I say a year, because a few hours don’t give you any idea of a disability. Many carers have sat in a wheelchair to see what it feels like. People have put on blindfolds or blocked of their ears. But such very short term trials, give no idea as to the long term implications of a disability. I have only mentioned three obvious disabilities. I am not suggesting that other disabilities are lesser.
Back to my sudden realisation. We can be, enabled by our environment. In a wheelchair, even a 1” bump is significant. When you walk you just step over every bump and step, without even seeing it. I have lost count of the places I have phoned to ask about accessibility, to be told they are wheelchair accessible. On arrival, they have steps, steep slopes, gravel or narrow doorways.
We can be, enabled by our environment. When we moved to this house I wheeled around freely for the first time ever. Then after the Disabled Facilities Grant, added a through floor lift, I wheeled around upstairs. I can now access every part of this house. It has been years since I could say that about a house.
But access alone is not the point. Access is only a means to an end. Access is reaching a place or thing. Getting somewhere. There are still ‘things’ I cannot reach. High cupboard, light fittings, high shelves.
The realisation that I came to was that being able to reach things, get to places, approach a location, enter a room, changes my outlook and gives me opportunities. I did not gain health or strength when we moved here. But, with the same limited strength I already had, I could do more. I gained opportunities. I was enabled by my environment. Rather than make this a very long blog, I will talk of the details of that another blog.
I have deliberately talked of being enabled by my environment. It is the positive side of the better known expression, ‘disabled by your environment.’ We can be, enabled by our environment. All it takes is the political will for housing and buildings to be made more suitable. It is life transforming.
Update: Following on from the mini-stroke, I did not improve in health. Therefore we had to take the difficult decision to sell Gracie. It was best for her and us. She is with a great family nearby. I have been able to rest more fully.
We have a puppy that’s 12 weeks old. Perhaps not the best timing as I had a mini stroke or TIA as the consultant called it, 9 days ago. I am now spending most of my time in my bed. Every now and then I get to see Gracie, our Cocker Spaniel (show). When she is tired enough to just rest on my bed, that’s not very often.
One such time of Gracie resting, is in the evening after a day of running around, the puppy, not me. This means that Mary and I can watch a bit of TV while Gracie rests. Well I say rest, lies back waiting for a slight sound to react to. Puppy owners will understand.
Once she has pretended long enough and is ready to go downstairs again, Mary picks her up and says goodnight. Obviously I also say goodnight to Gracie. Here is where the fun starts. Even though Gracie is only 12 weeks, she is not tiny. So once Mary has picked her up she fills Mary’s arms. She is also a wriggler. The puppy, not Mary.
I go to give Mary a kiss goodnight and either Gracie joins in and also gives me a kiss goodnight. She doesn’t want to miss out after all. Or, if Mary puts her on the other shoulder. Then there is the ever present danger of kissing a dogs bottom instead of my wife. The fun of having a puppy.
In January I was taken by ambulance to A&E at North Tees. This is my tribute to every woman and man I dealt with that day; it was a long day.
I had to call 999. But this isn’t about the reason for my 999 call, (I am back home and much better).
This blog is about the response and the people my wife and I met.
From the moment we pressed my emergency call button and the operator dialled 999, the whole amazing UK system kicked into action. We are far too quick to criticise and too slow to compliment. Mary and I have reason to highlight problems, but I would rather focus on what was great yesterday and with the NHS generally.
The lady who called us from the 999 operator was quick to assess the situation and send a paramedic, who arrived fast. He was a lovely man, unruffled, calm, and professional. His easy calming nature took the stress Mary and I felt down a notch.
The ambulance crew who were to take me to North Tees were just as lovely. Two ladies with a sunny disposition and helpful attitude. I have a repeated loss of muscle function, which is a rare condition. This means that I have often been left in difficult and painful positions. I must have Mary or a carer who knows about me, with me. In these Covid times, hospitals do not allow you to be accompanied unless essential. The ambulance crew assessed the need and agreed to help Mary demonstrate that need at the hospital, which they did, and Mary was allowed to stay.
On route in the ambulance, I lost muscle function, and the ambulance crew member in the back prevented my head rolling around the whole way. Even though it meant she had to travel sitting in an awkward position, she put me first. I find such things really move me, as being totally helpless in one of these ‘attacks’ I feel vulnerable and easily hurt. Mary was able to guide her from the seat next to me as to how to support my head.
At the hospital we had the most wonderful doctor, whose name meant peace, and who was a source of peace and help to us. The nurses managed to smile, laugh and be helpful, even though they were rushed off their feet. The A&E was so full they had to double up some areas. But we never felt a burden.
I do not know how they kept their sunny, bright smiling outlook during difficulties, stress, and problems. Being there for nine hours we got to hear and see a lot of changes and two different lots of staff. My admiration just grew. Our NHS is one of the most incredible, and I think often unappreciated things we have. The staff are battling on day after day, for massively long shifts. One we chatted to works 7-7. That is not a simple job, but a full on difficult, mentally, and physically taxing job.
The NHS staff are often the ones who suffer abuse from people who must wait. But it is not their fault that the NHS is underfunded. They do not choose how many staff to put on, nor the positions hospitals are built in. Nor which ones to close. It is not up to them how many ambulances there are, nor the way things are run. Yet day after day they smile and laugh and carry on. Surrounded by the dangers of Covid, the sadness of death, the anger of people let down by things outside their control. They carry on and do the most amazing thing. They are there for us. Not just at times of emergency, but in long term illness, for those illnesses that people don’t even want to talk about. They are there.
I want to say a thank you to North Tees Hospital A&E. To the local Ambulance Service and to the NHS. Thank You. You are awesome. You are appreciated. I don’t say it often enough, but I do say it often. The NHS is a brilliant organisation, staffed by wonderful people.
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“It needs to be 120cm from the mattress,” a pause, “oh, it’s not.” Listening to the OT saying this under to the bed technicians, while checking the health and safety requirements, I held my breath. Surely, after all these months, I wasn’t about to fall at the last hurdle. The bed technicians who had moved the bed upstairs had a discussion with her about some adjustments. The changes were made. More measuring. I should just mention here that they were checking and changing my bed sides, cot sides as they are commonly called. They are there so that I don’t fall out of bed when I lose muscle function without much warning. They were added after I first fell out of bed due to a loss of muscle function. Part of my condition.
Back to the OT and bed technicians who are standing, hands on hips, tapping their feet, waiting for me to finish the explanation to you all. “OK guys, you carry on.” After all their adjustments the OT had re-measured and pronounced that the bed was safe. Phew! I would not be rolling out of bed, or getting caught under the bars. This last, a less likely scenario as the cot sides are covered in a mesh and foam. But, I could give it a go if they wanted.
Now I have made an assumption. Which I am told is a very bad thing to do. Such a pity that doesn’t stop most people doing it; most of the time. My assumption was that you have been following my life story, hanging on my every trial and tribulation. Basically treating me like the celebrity that I obviously should be; an oversight that will be corrected soon, I am sure.
For those who have not been hanging on my every adventure; I will want to know why. Here is a explanation of why I was awaiting the OT’s safety proclamation on my bed. It had been moved. Is that enough or do you need more? OK, so just a bit more context. We moved into a new house in June and it has been in the process of being adapted by a DFG grant for most of the time since then. Not solidly, there have been gaps. Plus we have had work done ourselves; like making the garden accessible. The DFG grant has put in a through floor lift from what was the garage into my bedroom above and added a wet room en-suite. The bedroom is not large and so a lot of the things I had in my previous bedroom will be in the converted garage below. Apart from the flooring on the converted garage a few adjoining rooms, which we held off getting done till the messy work was completed; all is now finished. Yesterday my hospital type bed was moved to my bedroom which had an H type ceiling track hoist fitted the day before. All caught up?
Only hours before the bed was moved up, I had no curtain or blind in my bedroom and I was thinking that I would get to know the neighbours a lot better. Or rather, they would get to know me. Fortunately, our neighbour fitted a blind for us in the morning and saved my embarrassment and decency. He also saved the eyes of everyone in our close.
Here I was waiting to use my new bedroom, new bed, new hoist. I had already used the new wet room. Having gone up in the lift in my shower chair; covered in a thick layer of towels. Waiting with baited breath; I’ve always wondered about that expression. Sounds more like a fishing term than being paused on the edge of excitement. Mind you, the few times I have been fishing I just ‘held’ onto the bait, not sure how to attach it to the hook. So maybe that’s were it comes from. All of which is irrelevant, stop distracting me. Now you are holding your breath, waiting for me to continue. More likely you have swiped onto the next feed.
If you are still with me. You now understand why the OT’s hesitancy over a couple of centimetres was so important. Actually, this particular OT was filling in for my usual OT who is on holiday. So I had not seen her before. Perhaps because she was covering for someone, meant she was extra careful. It occurred to me, that I was glad she did not get me to test out my new ceiling hoist. The way she measured everything on the bed, I had visions of what it could be like with my sling and hoist:
OT: “Patients bottom is 40 degrees from the perpendicular.”
Me: “Will this take long?”
OT: “Not many more measurements.”
Me: “That’s good, I’m getting uncomfortable.”
OT: “Ah, where is it pressing in and hurting?”
Me: “Well… you know… where slings tend to on men.”
OT: “Possible excess pressure in groin area, needs investigation.”
Me: “So is that it?”
Me: “Great. Oh, that’s cold.”
OT: “Bottom hanging 12cm below sling.”
Me: “Now are you. Hey! wait a minute.”
OT: “Discovered reason for excessive groin pressure. Now fixed.”
Of course I jest, OT’s do not do the above. Anyway, at least my bed passed muster and I finally went up in the world. A feat I had waited many years to achieve. In fact I am sitting in my bed in my new bedroom writing this.
I’m sure you’ve all seen ‘Half a sixpence’ and if you haven’t, will now be rushing off to look it up. “Crash, bang, wallop, what a picture, what a photograph,” is a line from one of the songs in it. Which has absolutely nothing to do with building work. Although, they do have a house built; well beginning to be built.
What am I talking about? I have spent the last two weeks in a room below and beside a lot of building noise. Crashing and banging and walloping. Builders seem to find it easier to drop their tools than put them down. To throw things rather than place things. They are hard of hearing and need radios blaring. For some reason van engines often need to be left running. They trip over all the stuff they leave lying around and then off course they have the actual building work. Drilling, sawing, banging, angle grinders and general building noise.
We have been having DFG (Disabled Facilities Grant) adaptations done on our house to make it more accessible and generally much better for me. The garage has become a room, mainly to house the through floor lift which will go into the bedroom above; my bedroom. But as a result of being adapted it gives me a room to put my excess stuff into. My bedroom is already one of the smaller ones. By the time you have to leave room for the lift, a hospital bed, two doors (entrance and wet-room), wheelchair, wheeled shower chair, small wardrobe, and bedside table there isn’t room to swing a cat or for the rest of my stuff; if cat swinging isn’t allowed. Where will my collection of teddy bears go? What about my collection of antique sports cars? Then their all my suits of armour and my extensive collection of old phone boxes. I am of course kidding, but I do have more things than just clothes. So those things will be in the room below, it’s on the sunny side of the house; should be a nice place to sit as well, when you visit for coffee. You’ve not had an invite? It’s in the post.
I have already hinted at the other part of the building work; directly above my head. I am currently sleeping in the lounge. That’s a very appropriate name for our front room/sitting room, because I lunge around in my hospital bed. Anyway, something was happening directly above my head; what was it? The ceiling hoist? No, that just sits there until used. Ah yes, the wet-room conversion. They have taken a small en suite from the larger bedroom, swapped its entrance into my bedroom. Then extended it into the larger bedroom, which is now smaller. Are you still with me? I wish I was; I’ve only seen photos so it’s hard to really grasp what it looks like yet. The result is that I will have a large enough wet room for two carers and me; sounds like there ought to be a song there. Apparently due to my condition, care companies in this area will only give me a shower with two carers. No, not because I am so large, that’s just rude of you. It’s because I can suddenly go like a rag doll and even though I have a reclining shower chair with seat belts, its best to be safe. Shower time is therefore going to be crowded. Don’t worry, I know we don’t all have a shower. Not unless I happen to splash them, accidentally; which I would never do. Having said that most of the time it will be Mary giving me a shower, we haven’t got a rule about two carers, Mary knows the signs well enough to see ‘rag doll’ time coming on.
Back to these really quiet builders crashing about above my head. I appreciate what they are doing and I am looking forward to getting upstairs to my bedroom. I’m especially looking forward to the sea views from our balcony room upstairs. I just wish that they had learnt to be a bit more careful with their tools. Is it really necessary to throw a hammer on the floor after use? When I was on my feet and doing houses up, I had a tool belt and a work bench. My tool box was on the work bench and I put, not threw, tools back in that. Tools I was using all the time went on my tool belt. As for tripping over everything, that is just bad practice. The HSE would not be happy; mind you they often look unhappy. An HSE (Health & Safety Executive) Inspector doesn’t smile a lot, but then I guess they have little to smile about. If they came to see what our builders are doing, they might giggle on the inside, but they would have to be stern on the outside. A clean work area is a safe work area, no I have never been an HSE inspector.
Oh, the joy, the deep, deep joy, when 3.30pm comes and the working day ends. Yes, you read the time right; 9am to 3.30pm. I was in the wrong job when I used to work in an office. Anyway, the deep joy at the end of a long working day when the crashing, banging, walloping and general noise ends. The end is now in sight. Friday we are told, most of the work will be finished. Then all we have to wait for is the glass for the windows. Apparently, Brexit, Covid and Suez all worked together to hold that up, very co-ordinated of them all. Then we have to wait on the through floor lift; that was on an 8–12-week delivery from 24th June. The same three well co-ordinated suspects may be holding that up too though.
Crash, bang, wallop, what a picture the finished project will be. Well, it will be once we can get it decorated. The builders leave it with bare plaster walls; apart from the part tiled we-room of course. But once it is all done, it will be amazing.
I have discovered an amazing new diet. But, let’s not rush into my world changing revelation. Let me not spoil the moment. I don’t want to jump the gun and get you all placing orders for my miracle diet before I have even told you about it’s wonders.
But where do I even begin? Well, I was a poor lad, born long ago without a penny to my name… too far back? OK, let’s jump on a bit. The winter was harsh and cold, help just wasn’t in sight… still too long ago? You are a hard bunch to please. Straight to the point it is then. Speaking of which… alright, straight to the point.
Have you ever noticed ‘middle aged spread?’ It’s not a type of margarine. It’s when your middle decides that it wants to spread beyond your waste band. I consider that to be a betrayal of trust. After all, you have nurtured that belly all your life. Kept it hidden and tucked up cosy in a belt. You looked after it, never let it down or said anything bad about it. Then one day, without any notice, it just decides to burst out of your trousers and make an embarrassing show of itself to all and sundry. I wouldn’t mind, but it’s so undignified. It doesn’t even respect the outfit you’re wearing, trousers, shorts, PJ’s, skirt (not me of course), kilt (not me either, slacks (if you’re one of my American readers) or joggers. Whatever you are wearing it overspills them like a waterfall of flubber.
This ‘middle aged spread,’ flab to you and I, after all we can speak straight, can’t we? We can be honest with one another? This fat! Well, it just hangs there, wobbling and generally being silly. Not behaving itself at all. Today an OT (Occupational Therapist) visited. You didn’t know they did diets; well, they don’t. She was here to bring me a new sling for use with my ceiling hoist. A toileting sling; I will leave it to you to decide what that is for. Mind after I had tried it on, she said, “do you want to use the commode?” That’s a mobile toilet by the way. I said, “not with an audience.” Actually, I only thought that, I was just embarrassed, after all there were three people present. I’m not in the habit of using a toilet in public, even a public convenience. Being disabled is embarrassing, but there are limits.
Back to the sling, it has a Velcro strap around the middle, it goes around your ‘middle aged spread.’ The OT had brought two sizes, medium; I know, I laughed too, and large. Hang on, why did you laugh at medium? Well, the large was tight. But the OT said, “don’t worry, they are always tight, until you are hoisted.” We are coming in fast on the point of my blog now. Get your credit card ready to buy this almost unbelievable diet.
As I was hoisted into the air a miracle occurred. My ‘middle aged spread’ disappeared! Will wonders never cease? Something about being hoisted, gravity, physics, bottoms hanging out of slings; even covered bottoms. Whatever the logic, your belly becomes slim. It’s a wonder diet; instant and reliable. We won’t mention it reappearing on being lowered; let’s gloss over that. There are slight down sides to everything.
So, if you are suffering from ‘middle aged spread’ all you need is a sling and a hoist; hey presto, a slim tummy. Simple, eh? They should package it up as ‘The New Hoisting Diet’. Then in small print, “Only effective while in the hoist.” Aren’t you glad that you stuck it out till the end?
‘Getting to know you…’ Any fans of ‘The King and I’ will be in full voice by now. I of course have not reached, ‘…your cup of tea.’ There is a purpose behind the lyrics of course; Anna was introducing herself… no I mean in this blog. Mary and I have recently moved to Hartlepool; how did you miss that one? Go and sit in the corner. Which means, everything is new. Well, not quite everything. But I have to get used to a new house, new area, new equipment, new doctor, new OT and new carers. I am getting to know them.
Fortunately, I already understand the local dialect. Which reminds me, when we last lived here many years ago, I didn’t understand it. One of our sons went to a new school here and after school, went home with a friend. He rang me to say that he would need collecting later from the friends house. So, I needed an address and directions. You’re a clever lot, so you already know what’s coming. The friends mum took the phone and gave me the address. Well, I couldn’t find it on the map, not the way she said it. I am not going to give their address out here, but there are some ways things are said up here, that take getting used to and her accent confused me. The road name did not sound the way it looked to me on a map, when she spelt it out. A couple of examples of local dialect that I have come to love are: moower (elongate the first part), is a moor, and twoast (say it as one word quickly) is toast. But I am assured by many locals, that they don’t have an accent in Hartlepool. Anyway, our lass was seeying, away with ya hinny, they don’t talk like that, flower.
You do realise I am going to be in trouble now. I probably will upset all my carers. Actually, they are a lovely group and have a wonderful sense of humour. Just as well really; with me as a client.
I was thinking the other day. A very good habit pooh bear. Imagine, walking in to meet me for the first time. After getting over the shear joy of meeting me and the wonderment at my muscular physique and taut svelte body. They then have to deal with my humility. How do they keep from fainting? I’ve known me for years and I can’t stand in my presence; no, wait, I just can’t stand.
Being serious for a moment… that’s long enough. Let’s have another try. It’s always difficult getting to know new people. Both for me and them. Carers are a whole other case. I won’t go into all the reasons now, but if you read my blog “Care, a unique relationship.” You will understand more about why. In brief a care to client relationship is both professional and personal, distant and yet somehow close. It’s hard to quantify, because when someone gets to know you well over time, they can’t help but understand you well. Of course, what makes it unique is that understanding is one sided. In most relationships where you are known intimately, you know the other person just as intimately; not so with care. Carers are like friends and yet not friends, a strangely intimate, yet not intimate, professional, yet close relationship. I don’t know of any comparable relationship. It is not like your doctor or a nurse, not like family or friends.
Here we are again… I’ll resist ending that ‘happy as can be.’ Starting that process over again, getting to know a new set of carers. Eeee, I’ll be off now flower, our lass is bringing me a stottie.
Good morning from sunny Hartlepool, don’t check your weather forecasts, they are not always accurate. Besides, it was sunny, when we arrived. Hartlepool greeted us at the border, yes when we were getting our Southern passports stamped, with glorious sunshine. Actually on the subject of borders Teesside is a funny place. It technically doesn’t exist; by which I mean you never reach a sign that says you are entering Teesside. But you do get signs that tell you have many miles away it is. I wonder if it’s like a rainbow and if you find it there’s a pot of gold?
The county we live in is actually called Cleveland, unless you are entering the address on some systems, then it’s Durham. Anyway, back to arriving on Teesside, I mean in Hartlepool. The effort of that display of sunshine was a bit much and by lunchtime a few drop of rain made an appearance. But I maintain that is merely because we were in the car at The Headland waiting on the house keys. As an aside, The Headland has really changed since we were last here. Verrills Chip shop has an ice cream parlour at the side. What else are you expecting? The rain knew that we were staying in the car, had it seen us exit the car it would have stopped immediately. Because the moment the keys were available, mid-afternoon and we headed to our new house, the sun popped its head out again. Which was good as it meant we were dry and warm when our lovely new neighbours came out to say hello. God has blessed us with wonderful neighbours, just as he did in Wellington.
Now about the elephant in the room. A few of the comments on my previous brief post, suggested that it is cold up here. I don’t know what they mean, it is June after all. Let me make this absolutely clear for the naysayers: We did not go to the house the day after we owned it in a howling gale and heavy rain. Mary certainly did not struggle to stand up as she went around the back of our house to check on the plants. The plants were not huddling together shouting, “why did you bring us here? We’re southern plants, not hardy northerners.” Plus, we have not been glad of the heat being on full in the hotel. So, any thought of the cold up here is totally wrong. Besides, weather is up and down anywhere. The odd drop of temperature in June can happen in the south too. The forecast is for a balmy 17 degrees centigrade tomorrow. I might even take a layer off; I was finding the furs a bit heavy and I never liked smearing whale blubber over my skin. Actually, from our experience living here 11 years ago, this is unusual for June. I remember days in summer I could take my coat off. Not for later in the year though. But we do have a warm house to shelter in.
In my photo scanning, did I mention I am scanning all our old photos. Anyway, I am and it’s an interesting trip down memory lane. In doing this I have been finding photos of our children with effort cups from their various schools, (Awarded for putting in extra hard work). Such things never existed when I was at school, but if they had I would have needed a ‘little effort’ or ‘must try harder’ cup. That’s what my school reports used to say, which is very unfair; how did they know I wasn’t already trying hard? Staring out of the window daydreaming in class is hard work. Concentration isn’t only reserved for listening to the teacher. It is not easy having to explain to the teacher day after day why your homework is so brief. I never understood why the teachers got so excited about the summer holiday projects they gave us; they should have just called it homework, not projects. ‘This will keep you busy and occupied all summer,’ they said. I didn’t need to be kept busy and occupied, what with my film making and imaginary games I was busy enough. I could barely fit in family holidays, much less ‘projects’ from school.
Actually, on the subject of film making, yes, I was. I bought my first 8mm cine camera when I was about 10 or 11. I bought it with my earnings from helping my Granma and Uncle in their part time jobs cleaning, plus occasionally going out with my Uncle in his lorry. It was second hand of course, but expensive for me to buy. My mum or my grandma used to treat me to the occasional roll of film (it included processing). 8mm cine film was 3 minutes long per roll so you had to learn brevity. These days with digital stills and video we tend to film everything and photograph anything that we see. At that time in the early 1970’s, wait that can’t be right I wasn’t even born then surely! At that time, we were careful to plan what to film. If you believe that of me you are very gullible. I was still very free in my way of doing things and I planned very little. Most of my films, which were either Sci-Fi or Horror, were written and performed (by me and my siblings) on the fly. I would get a vague idea, put up a set; that sounds grand. My sets were paper, cardboard, old chairs and ancient radios sprayed silver. Star Trek looked old fashioned compared to the amazing quality of my sets. Don’t even get me started on costumes. If I found a brightly coloured nylon top it was a space ship uniform, just added an insignia. Tomato sauce was generously distributed for blood and fire-lighters were held on tin plates in front of the camera to look like everything was on fire. Given all the cardboard, paper, wood and man-made fibres in an enclosed space I am amazed everything wasn’t on fire. I shook the camera and we all leapt around for every explosion or take off. Amazingly detailed, or should I say lack of detail, cardboard models flew off in cut-aways. My cine camera was silent so I added sound afterwards, I had a sound projector and used sound film. The words were add-hock, often thought of as we filmed. Mostly we just had fun.
When I wasn’t film making, I was out with friends rescuing small animals. We formed an animal rescue group, the three of us. Travelling on our bikes with small animal first aid kits. We never actually found any wounded animals, but we whizzed around searching.
Then there were games of war on two opposing hills, exploring the woods and fields around the village where we lived. Long cycle rides and walks. The two weeks of family holiday each summer. A week or two with my Granma in Hastings. When was I supposed to fit in homework!
I have just realised that I owe an apology to any teachers reading this blog. It must be very difficult being a teacher, certainly not a job I would choose. Teachers, if you searching around for that apology it’s not here, I just said I realised I owe you one, not that I am going to apologise.
Where was I? Oh yes, burning my brothers Airfix models, another thing that occupied a lot of my summer holidays. Burning models and trees and all sorts of things as cut-aways for my disaster movies. They were a bit disastrous, but what I mean is they were movies about disasters. Like Titanic, but without the iceberg or nudity. I was ahead of my time really, in fact George Lucas probably got his ideas for Star Wars from me, or at least he would have if he had seen my films. Close Encounters was a definite rip off from my ideas. I was always making mountains out of mashed potatoes. As for Terminator, the number of times I said to my mum ‘I’ll be back,’ really, I should be paid millions in copyright infringement.
I think I have gone a little off topic and I am trying not too after that letter from Mr M adeup, see my last blog ‘Complaints department’. So, I had better return to the issue of Effort Cups. They are a great idea, I just wish there were cups for people like me; ‘if only we’d known you were trying, you just seemed to make no effort,’ cups. Perhaps I need to create one.
When I was a child, I used to gather all the neighbour’s kids and
we would sit on my bed and imagine we were flying to far off lands. Imagination
was always my strong suit. I was inspired by ‘Bedknobs and broomsticks’, a
Disney film we saw that year. If you’ve not seen it, I probably wouldn’t
bother. I would get all the younger children so convinced that we were flying, they
could almost see the ground pass beneath them.
I have found imagination very useful in illness. When you spend a
lot of time in bed, being able to travel in your mind is a useful skill. There
is a technology that makes things even easier. Computers, they have become able
to produce such realistic imagery that you can feel you are travelling without
leaving your house, or in my case, bed.
I have a flight simulator and the joy of it is that many of the planes have auto pilot, and even when they don’t, I can fly them very simply. I have flown a real plane, back in the early 1980’s, but don’t expect me to fly you to New York, I only had a few lessons in a Cessna. With PC simulations I leave them set on easy and just drift along looking around at the scenery. Mind you the other day I was so intent on looking at the scenery that I crashed a Boeing 747-400 in London. You probably read about it in the news, or you would have if it was real. Flight simulators are great fun when you are limited in bed, flying anywhere in the world, slow in a hang glider, or high and fast in a jet, there is nothing quite like it when you are unable to even walk. I am so looking forward to Microsofts new flight simulator due out in 2020 it’s so realistic, it almost looks like a real plane, that’s if the demos are anything to go by. The current Microsoft simulator, FSX is no where near as good, you do need a good imagination to believe you are flying in that. There are people who buy complete artificial cockpits, controls, multiple screens and realistic seats. They go on imaginary flights all the time, although I guess they come down to earth when they look at their bank statements.
Modern PC car simulations are much more realistic. The problem is
they are much more tiring to operate. I can’t use a steering wheel as they all
seem to come with pedals and the alternative, which is hand controllers, are a
bit twitchy and take a lot of concentration. But a quick crash around Scotland,
on Forza, driving into other cars and people’s front gardens is great fun. The
realism is amazing on a powerful PC. Trees, grass, shadows, water, dust,
flowers, reflections on cars and sun glinting. You could believe it was real.
That is apart from the fact you can crash into anything and not get hurt. It’s especially
fun as in my case I can’t drive any longer in the real world.
Why am I talking about simulators? Because I believe they are a
great idea for anyone who is as limited as I am. If you spend a lot of your day
in bed, as I do, it’s a thing to do that is not too tiring and yet not totally inactive.
Many things I do just involve watching TV or are too tiring, like puzzles or reading.
Even writing this blog wears me out. As I mentioned earlier flight simulators
can be really easy to fly, no effort. My favourite thing to do is choose a mission
where the plane starts out flying above interesting scenery and then leave it
in autopilot. There’s an option in FSX to view outside from the wing, above,
side or behind, as well as in the cockpit. Plus, you can move the point of view
within that. You can also skip to other planes nearby. The most realistic part
of FSX is the sky, flying through the clouds is brilliant. When you are many
thousands of feet above the earth the scenery below looks more realistic too.
It’s a very freeing feeling.
I am fortunate because I can take myself on a similar trip in my
head when I can’t use a PC. I do so often when in a “collapse”, the times when
I lose muscle function for about 10-15 minutes at a time.
I would recommend a simulator on your PC if it can run one, for
anyone in my situation. If you only have a tablet, like an iPad there are basic
flight sims available for those. I realise that escape into your imagination
doesn’t solve underlying problems. But it can give you a break and that is
helpful. Often, it’s what you need most.
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We lived in Creech St Michael between 2010 and 2016. It was quiet place to live, so long as you ignore the constant thrum of the M5 motorway. My first vision of Creech was blossom on the tree outside the bungalow we rented on West View. It was a riot of colour and very impressive. Our neighbours there were wonderful, one in particular used to take Mary shopping each week after I could no longer drive. By that statement you will realise that when we arrived I could drive. That ability only lasted for the first 6 months.
We moved back down to Somerset from Hartlepool, where we had moved for my work in 2005 and had lived till 2010. After my health took a nose dive it made sense to move nearer Mary’s elderly parents who live in Dawlish, now just her Dad is still alive. We also wanted to move near a Church that we were happy to be part of, so as Taunton Family Church was just getting started, we joined them and moved to the area. I was limited, able to drive an automatic, not having collapses, but unable to walk more than a few yards. So, I had a wheelchair to go further. I didn’t often go out at all. The Church was very supportive to us both with our move and day to day. It was only after we could no longer travel into Taunton that we discovered there was a brilliant Church on our doorstep, literally a few hundred yards away. Creech St Michael Baptist Church. It’s this Church we are still members of. It’s odd how things work out. God had a plan for our lives. He had placed us very close to a brilliant Church at a difficult time.
My health got worse and the collapses came back. I hadn’t had them for a few years, hence being able to drive. Once they returned, I had to hand back my driving licence and I found that the wheelchair I had was not supportive enough. So, I gradually became totally limited to the house.
To give you a picture of what this was like as it developed over time. Walking outside I collapsed on the concrete paths, steps and in our garden a few times, I am not a quick learner, but eventually I stopped going outside. I also collapsed in the bath, fortunately I didn’t drown as I don’t have it deep and we had a short bath. After that there were no more unsupervised baths, but the second time I collapsed was with Mary present and a very shallow bath, so we decided even that was unsafe. Other times, I collapsed head first into my hot dinner during meals, not once but a number of times. I also collapsed onto the hard kitchen floor with things in my hands and even in our small bathroom in such a way that my head was behind the toilet. By this time we had the Piper help system installed, but they took ages to come and often just sent an ambulance anyway. I was then pretty much limited to a chair for safety. If you read my other blogs you will know I had some silly times even on a chair. Alongside this my legs had already become weaker, stiffer and less responsive so the collapses were not the only limitation to walking, plus with everything else health wise going on I was struggling anyway. The district nurse and OT came with adult social care to do an assessment of my care needs. They were horrified that I was spending day and night in a riser recliner chair. That’s when they gave me my first community bed, what I call a hospital bed. (If you read my blog “The cot sides”, then you will hear how I ended up with bed sides.)
(If you read my blog “Keep on rolling”, you will not only read about my previous wheelchairs, but the new ones I got in Creech and the problems and blessings of having them.)
Creech bungalow was totally unsuitable as it was too small to operate my wheelchair inside and the doors too narrow and offset to exit and enter easily. As we were renting at the time, we put our name on the Council housing list and waited. We had letters from the GP, OT, district nurse and local counsellor all saying how unsuitable the bungalow was. We waited three years. Not because nothing suitable came up, three suitable properties came up, but each needed very minor modifications, one example is a small ramp was needed for one. The Council said that made it unsuitable. Eventually after three years we were offered a new build bungalow. At that same time, we came into an inheritance and so it was right and appropriate to buy a property. We chose a flat on the same complex as the bungalow we had been offered, it was a 24/7 care complex. We were in possession of the contracts, had them signed and ready to return in April 2015. If you have read my blogs about what happened, then you will know about the miracle that happened in May 2015. I regained my ability to walk and the collapses stopped, for two and a half years. The 24/7 care flat was no longer appropriate. It was during this time we moved to Wellington in July 2016.
Those read my blogs will know I again lost my ability to walk and most of the other issues returned in January 2018. For my theological musings on that read my blogs “You can do it again” and “How can it be OK?”
Creech was a great place to live in terms of the people, Church and environment. But the bungalow and my health experience there were not good. I would love to live there again, if only I had easy transportation. It would be great to be near our Church and our friends there again.
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As I sit in the conservatory at Cleve Spa Coffee shop, the tune playing in the main area is “Lovely day.” Our wedding was before the days of home video cameras being common place; the early 1980’s. But a friend made an 8mm cine of the glorious event, now copied digitally of course. He used the song “Lovely day” as a backing track at the beginning, while Mary and I were getting ready.
Mary and I fell in love the moment our eyes met. I was going to say across a crowded room but that would be cliché. Besides it was in her office. I went to do some voluntary work for her as a photographer. She was a Hearing Therapist at Stoke Mandeville Hospital, I was waiting for a new job to start and at a loose end. She needed photos to illustrate her talks and I was a keen amateur photographer. Between jobs at a photographic studio in London and an electronics distribution office in Aylesbury. Quite a change and another story.
I asked Mary to marry me after we had gone out for 2 weeks, I left it so long as I didn’t want to rush into it. Mind you our parents insisted we waited a year before we got married. Now 37 years later I think things have worked out OK from our love at first sight marriage. I will pause here for the oohs and ahhs. Or is this too sugary and sweet for you?
The film of our wedding starts with a shot of two houses next to each other, Mary’s parents, where she was getting ready and their neighbours, where I was preparing. My mum pops her head out of the door of Mary’s parents house. Presumably checking the coast is clear for Mary to go to the hairdresser. I really don’t know. She could have been checking the weather.
The scene changes to an impossibly young man trying on a jacket and adjusting his tie. I think it might be me. I look so thin I am almost invisible sideways on. Then we move to a shot of Mary, her mum and sister. Veils are being tried out over the wedding dress. It’s all very romantic and very 1980’s in fashion.
Next we see the Methodist Church where we were married. Mary’s brother is playing the organ. ‘Only fools rush in’ not a song I knew at the time. I didn’t even know it went on to say “I can’t help falling in love with you.” I thought he was just being ironic, because I’d asked Mary to marry me so quickly.
I remember that day so well. My knees knocked so loudly people at the back went to answer the door. I was so rigid with fear I couldn’t even turn to face Mary as she walked up the aisle. I wanted the floor to swallow me up, I was so nervous. But, I was also very happy to be marrying the woman I loved. At the reception my speech, which was the first bit of public speaking I had ever done, should have indicated to me never to repeat it. I listen to the film recording ever since in horror. No one would believe I would go on to speak to crowds of hundreds both in the open air and in large halls. When I have spoken since I have been as nervous as on that day, but I’ve learnt to control it better. I have also been taught to speak from my chest not my nose since that day. I can’t replicate the way I spoke at the wedding, just as well.
One of the many things I miss, being limited by health, is public speaking. Specifically what a lot of people would call preaching. Although that term has gained a negative meaning to most people. We say “don’t preach at me.” Meaning, don’t tell me what to do. Or we talk about preaching, meaning people who stand on the streets shouting condemnation at passers by. Telling them they are going to hell. Neither description fits what I do.
When I preach, or as I would rather describe it, talk about God. I share about God’s love. How we all fail and need help. How God knows that, and wants to reach out to us through Jesus. I share about Jesus, who says “Come to me all who are weary and heavy laden and I will give you rest.”
I saw a cartoon on facebook recently that was an atheist view of life, after leaving religion. It showed a line of people under umbrellas in the rain. One in the middle, supposedly having left religion, was putting down their umbrella and finding it was not raining. I found it very funny to see a cartoon depicting the exact opposite of reality. Life can feel very tough without God. We can feel inadequate and try to measure up to standards of the world that are impossible to meet. We end up feeling stressed, overworked, overwhelmed and desperate. The image of rain captures that feeling quite well. Then when we turn to God, through Jesus, it’s as if a weight is lifted from us. It feels like the sun starts to shine, even in the dark. Some people describe it as like a new life. If that is preaching, then I am guilty. What I don’t do is condemnation or judgment.
On our wedding day I managed to break my cufflinks cutting the cake. Why I was using my cufflinks to cut the cake? I don’t know. Actually I was holding Mary’s hands over the top of a knife handle as we attempted to cut the cake. We forgot where the soft part of the icing was. So we were pressing too hard. Rather than just mark the icing we were determined to cut the cake. All the pressure on the hard royal icing with two pairs of hands pressing down broke my cufflinks. My dad gave me his spare pair, which I still have.
Earlier in the day I had taken photos of Mary while she was being photographed by the professional. On the film you see me in the walking backwards motor drive firing, taking multi shots of Mary, looking very cool. Mind you the most impressive bit of photography I did at a wedding was when I married my sister. No there was no incest. I was able to conduct her marriage as a Methodist Minister in training at the time, in the 1980’s. But, as I also volunteered to take her wedding photos I pronounced the final blessing, then ran, I mean processed speedily, ahead of the bride and groom down the aisle so I could photograph them walking down. I wasn’t in as many photos as would normally be expected.
Back to our wedding. One other funny thing happened. On arrival at the church Mary and her Dad arrived without attendant bridesmaids and the photographer wanted to capture them arriving. The chauffeur kindly obliged in preventing Mary’s train from getting dirty. He carefully ducked behind Mary and her Dad, trying to keep out of sight, holding the train. The problem being he was very tall and large, whereas Mary and her Dad are shorter and slight. They were not designed to hide him. Somehow he was invisible on the photos. But he is beautifully captured ducking behind them up the driveway to the church on the Cine film. It is a very funny sight as he impersonates Quasimodo, with Mary and her Dad apparently oblivious in front.
While on the subject of weddings we once went to a family wedding where the announcement at the speeches was, “my Lords, Ladies and gentlemen.” No I am not showing off, the Queen wasn’t there, she was busy.
I can’t believe that as I finish this blog we are still at the Spa. We have had a light lunch and an afternoon drink, so perhaps that’s alright. What a lot of memories are triggered by a song.
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.
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.
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.
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:
‘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.
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.
Mary and I have been married 40 years having met a year earlier and fallen instantly in love. Yes, the full fairy-tale. We have three children, Sandy, Chris and Adam. Sandy who is married to Christian lives in the USA, Chris and Adam.
Mary and I are the embodiment of north meets south, with Mary from the north. We met when Mary worked at Stoke Mandeville hospital, where I was volunteering at the time.
We have lived in various places Steeple Claydon, Stoke Mandeville, a few weeks travelling in Israel, Simpson Cross (Wales), Bristol, Nailsea, Hartlepool, Hatch Beauchamp, Creech St Michael, Wellington and now Hartlepool again.
Our garden at Creech St Michael
The first signs of illness were in Bristol, but it was in Nailsea that it took hold more fully. Hartlepool is where I first needed a wheelchair. See the blog The unexpected emergency, from our time in Hartlepool. Creech St Michael is where I was first limited to a hospital bed and had carers for the first time, but I was still able to weight bear for transfers sometimes. A number of my blogs are from here, the first being Hello World.
It was also Creech St Michael where a miraculous healing happened, and I was able to walk for two and a half years this carried on until part way through our time in Wellington. Two years into our time in Wellington I was no longer able to weight bear or walk and needed a hoist for the first time. To understand something about this look at my blogs “You can do it again.” And “How can it be OK?”
The Nailsea years
Our arrival in Nailsea in 1992 didn’t start well. After an exhausting day moving, with the help of my brother and brother in law, I awoke with a head splitting, sick, eyes blinding, face numbing, migraine. It wasn’t a headache. Our eight-year-old daughter, Sandy was with me, while my wife and two younger sons Chris and Adam, aged six and two were staying with my mum. Having seen that I was totally incapacitated by migraine, Sandy was making her breakfast and a drink for me.
When I pack a microwave, I use any spare clothes to hold the glass plate safely within the microwave. Not knowing about my clever packing skills, Sandy opened the door saw the clothes in this odd place and pulled them out. I heard the crash of glass from my bedroom and it mobilised me, slowly and painfully. Not an auspicious start, trying to clear broken glass from the kitchen floor, whilst in agony, trying not to be sick. But things got better.
Our first night as a family in this new house was an eye opener. Or should I say ear opener. We’d moved from a busy, noisy street in Bristol and here we were on a quiet road in Nailsea. Mary and I sat down after the children were in bed. After a moment of silence, we thought we’d gone deaf. Then we heard a cow moo. We’d never before or since lived anywhere as quiet, it was lovely. The house itself was not as lovely, it had been neglected and we decided we would only stay there for six months. We actually stayed thirteen and a half years.
We’d moved to Nailsea because of the schools and because our two sons had severe Asthma which meant we needed to move from the polluted air of the city. Selling our house in Bristol we rented a house next to one we planned to buy once the price dropped. This was when house prices were dropping, but faster in Bristol than Nailsea. But our plans didn’t work out. Due to a combination of events we ended up continuing to rent the house in Worcester Gardens.
Nailsea was an amazing place to live and still a place we look back to fondly. The first thing that struck us was how friendly it was. The health visitor recommended to Mary a neighbour across the road who would give her a lift to the school on cold wet days. This was needed because our lads had such severe asthma the cold air would trigger an attack and I used our only car to commute into Bristol for work. Our actual neighbours were amazing too, being so friendly and welcoming.
Safe is a word we always associated with Nailsea, it’s a place where we were happy to allow our kids to play out in the streets or at the local green. After the hothouse schools at Henleaze, our children really thrived at the Nailsea infant and junior and latterly the comprehensive school. The more relaxed and yet solid education suited all of them and they learnt effectively. The infant and junior schools were also very good at dealing with asthma.
We’d never lived anywhere, especially such a small town, with so many large churches. Not just large, but joyful, encouraging, full of life, supportive and helpful churches. As Christians we got to know many folks in the churches of Nailsea.
The fly in the ointment for me is that even before we moved to Nailsea, I had unknowingly been ill. In Bristol I’d been doing work on our house and towards the end of doing that I found my normal high energy levels dropping. Pain increased and I started to really struggle to function. Some days at work I literally couldn’t move for a few minutes and I felt sick and ill. Obviously, I saw the GP, he ran some basic blood tests and for some reason fitness tests, I was told I was unfit and needed to exercise more. In 1993 there was one blood test result that had a yellow highlight from the path lab, my red blood cells were enlarged, more on that later. So, on doctors’ advice I exercised, I started walking a mile each lunchtime and I bought an exercise bike and spent half an hour each night on it. A month later I went back to the GP, he re ran the fitness test and my fitness level had decreased. This was the first thing that pointed to a possible diagnosis. Muscles that are made worse by exercise is a symptom of ME. Normal muscles improve over time with exercise. My GP at the time didn’t believe in ME so he didn’t diagnose that.
Muscle fatigue and tiredness were not my main problems. I had pain, so severe that I could have happily ended it all, had I not had a family to live for. There were parts of my body that lost sensation, like they’d been anaesthetised and then came back a week or so later and another area lost sensation. My legs, my arms, my hands and my face competed with each other to see which could last longest without feeling. I had balance issues, my legs didn’t always obey me and there were other neurological symptoms. I repeatedly visited my GP at the time, who will remain nameless. Each time he ran blood tests there were yellow highlights on my red blood cell result. I now know these are megaloblastic red blood cells.
He called them, “Bully beef red blood cells, a sign of how healthy you are.”
He reckoned that was why the lab highlighted it. I now know it is a sign of pernicious anaemia, he should have known that. But these first sign of pernicious anaemia he totally ignored. There were several other anomalies in my blood test results:
My GP said this,
“In someone who was ill they would be significant, but in a healthy man like you we can ignore them.”
Yes, I found that unbelievable as well. I was repeatedly visiting him because I was ill. He didn’t really see me as ill even though I had lots of symptoms and anomalies in my blood test results. I struggled on working for two years with no answers having to take bigger and bigger chunks of time off work.
One day I was driving up the motorway. I entered it at Clevedon heading uphill towards Bristol. Being early morning, it was quiet, and I was on the inside lane. As I entered the motorway my hands fell off the steering wheel and my feet slipped from the pedals, my body went limp and I slumped forward with my eyes closing. I was not asleep, but frighteningly awake. I really thought I would die. As I was going uphill the car slowed with no acceleration applied, due to the motorway camber it drifted onto the hard shoulder and wedged against the kerb, stalling to a halt. After about half an hour or so, it felt an eternity I came around from what I now call my first collapse. (see other blogs for more details on these) Drove very slowly to the next exit and home. I went to bed and called the GP. He said I was just suffering from exhaustion and overwork and gave me a week off work.
I needed to know what was really wrong. I didn’t know at that time I could have just changed GP’s. So, I paid to see a private doctor. He was the one who diagnosed ME and said only time and rest would cure it. It was a poor diagnosis because it stopped them looking for the other problems, leading to another six years of untreated pernicious anaemia after it had already been untreated for a few years. As the diagnosis of ME gave an open-ended return date for work, my employer fired me because I was ill.
Over the next few years I was mainly limited to the house. I could occasionally get out, on a good day. But I found that my legs, became more and more disobedient as time went on, as if I was drunk. It was only recently that a neurosurgeon explained to me that my inability to walk was caused by the permanent neurological damage, resulting from the pernicious anaemia (central neuropathy) and that there was probably another overarching neurological condition that has been missed so far.
Between 1994 and 2000 Mary not only had our children, but me to look after. There were times when she had to leave them to sort themselves out downstairs, while she comforted me as I lay in bed. I mentioned before about pain. Mary sitting with me gently stroking my head and praying was the greatest comfort. Other times I was lying on the sofa feeling retched while the kids played around me. These were difficult times.
There were times of great joy too in those years. Kindness from friends and neighbours. Generous gifts of money that enabled us to buy food, a car given to us just when our previous one failed its MOT. Help from the churches. One-time Trendlewood Church took Mary and the children on a camping holiday, while our neighbour kept an eye on me, sorting my meals. At the campsite there was a swimming pool, too deep for Mary, as she is only short. The kids wanted to slide into it down a shute. So, the pastor stood in my place like a surrogate dad and caught each of them as they slid into the pool.
Mary found respite in an art group with two friends. The three of them met together for years. Mary also got an allotment near our house. It became her oasis from the stresses of illness at home and a place I could occasionally walk to and sit in enjoying the beauty.
In 1999 I’d finally had enough of my GP telling me I was fine, and nothing could be done. I insisted I see a neurologist. Whom I saw early 2000 and he diagnosed pernicious anaemia. After it was treated, I had a respite in my health. Let me explain for the non-medical. Any form of anaemia causes the body to be starved of oxygen. My body had been slowly starved of a full supply of oxygen since about 1990, when I first had symptoms. Hence the damage to my central nervous system.
From 2001 to 2005 I worked part time for the City Church Bristol as an Evangelist. We set up weekly at Nailsea Market giving out free tea, coffee and biscuits or telling people about the Alpha course.
During that time, we also formed a Church plant called Link Church that met for a time at the Town Hall building, where the Baptist Church now meet.
One time we put on a fun weekend with the help of a large group of teenagers. It was called The Noise and we held it at Scotch Horn sports fields, August Bank Holiday weekend 2002.
In those years I also joined our children in a couple of productions of Nailsea musicals, my favourite being ‘Lest We Forget’. I love singing, acting, not so much. I am not saying I am any good, I just enjoy it.
It wasn’t that I was totally well in those years. But think of it this way, you’ve been suffering from reduced oxygen for years and suddenly your oxygen levels are returned to normal. It’s amazing, your energy levels increase, headaches decrease, and sickness gets less. Its like going from being on the floor to a couple feet above it, where normal is the ceiling. Its only once you have experienced it for a while that you realise the remaining limitations. What you may have realised about my character, by the fact I carried on working for a few years when I was first ill, is that I push hard and don’t give up easily. I am a fighter and not a quitter. So even once I realised, I was still ill, I carried on doing things. It was after I realised that I was still ill, that I started part time work for the church and joined Nailsea musicals. There is a foolish part of my character that thinks ‘if I push myself really hard, I will be able to overcome this.’ Of course, the actual result was a complete collapse again in 2005. I stopped everything and not surprisingly, having stopped and rested for a few months I felt better. So much better that when I was offered an opportunity to go and work in Hartlepool, part time, I took it. But that’s another story. One you will find in my other blogs.
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