All aboard

As a child I loved trains, who doesn’t, well keep it to yourself if you don’t. So what a delight that the respite hotel we regularly go to is the Railwayman’s Convalescence Hotel. Yes, it’s from before women’s lib. Should be railway person really. It’s a wonderful place to convalesce or holiday. RCH Bridge house Dawlish. The best bit is you don’t need a link with the railway. Although I think if you have one you get special discounts; don’t quote me on that.

They have two downstairs rooms that are wheelchair accessible with wet rooms. They also have wonderful staff and great food. On this stay we organised some care from a local care company and the two Carers I have met so far are brilliant, experienced, friendly and a good laugh. I enjoy a laugh, I would think you can tell that. Hopefully I will get to meet them again on our next stay.

We were chatting to one of the RCH staff the other night and she said, “I suppose I’ll end up being in one of your books now.” I assured her she wouldn’t and I am true to my word. So I have decided to just blog about her. That’s not the same thing is it? She comes from another European country and when she was first here at Christmas, she said to the other staff, “when are we putting up the boobles?” Not a surprise that they were a little taken aback and unsure when or even if, such inappropriate things would make an appearance. That is until someone realised that it was a pronunciation problem and she meant “baubles. Christmas baubles to be precise.” Ah the misunderstandings of pronunciation. I remember when we first lived in Hartlepool wondering where and what the mooer was. Until someone explained it was the moor. It also took me a while to grasp that toe-ast is toast. Sorry to all my Hartlepool friends, one in particular, she knows who she is. I’ve digressed, how unlike me. I was talking about trains at one point wasn’t I?

I love trains, there we go, back on track, literally. Actually I prefer cars, but don’t tell anyone. Today we are off on a mini bus trip to Dartmouth a place we have never been to. Oops off track again. I have my sun hat, swimming trunks, sunglasses. Maybe a bit optimistic as it’s 7 degrees out there. I wrote this as we were just about to set off. Now I am back, sitting in bed and looking back on that day.

What a day it was. I wear a cheap version of a Fitbit watch. Yes I need to keep track of all my running, walking and exercise. Actually it was lying around the house and I needed a watch. The minibus we travel in takes about ten people and a wheelchair. There is a lift for the wheelchair and I am at the back. Unusually I have a good view all around. It’s a fair way from Dawlish to Dartmouth being bumped around in the back of a van. Fitness tracker watches measure distance walked by arm movement. Every bump counts as a step, about half way there my wrist buzzed and I looked at the watch. It was going crazy, lots of animated displays saying congratulations you have achieved 2000 steps. Well if only it had known I would have got an even bigger fanfare, 2000 steps without ever leaving my wheelchair! I have just upset everyone with one of these watches you thought you achieved 10000 steps a day, didn’t you?

Dartmouth is a lovely place and quite accessible. You need to avoid falling off the unprotected edges into the water, but otherwise it’s great. I really enjoyed the push and pull lower ferry. We had coffee at the URC church coffee shop, very accessible and nice coffee.

We went to Torcross beach next. Glad I brought my costume. OK so we were  just there to see the WWII tank and for a wheel along the front. Interesting story to the place about the practice for D day landings.

Before our return the minibus driver joked that we needed to pay or we’d be walking back. I said if you guarantee I can walk back I’d be happy to go for that option. Seems it wasn’t a real option after all. The return trip was as bumpy as the way there and I finished the day having done 3600 steps all without standing. Sorry Fitbit wearers.

I think I should at least mention trains. There I did. I don’t really want to recommend the RCH because then you all might go there and I will not find room. But it is an amazing place and we always enjoy our stay.

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Stop, Look and Listen

When I was a child I was taught to Stop, Look and Listen at a busy road. Perhaps that’s good advice for dealing with others as well. Stop and think, Look at a person, Listen to them before forming an opinion.

I can be quick to judge others. Quick to think I know best. Quick to form an opinion. But am I alone in that? As I have got older I have learnt to slow that process down and ask questions first. Not directly of them, necessarily. But questions about the person. Get to know more about them.

How well do you understand other people? When you look at your neighbour, work colleague, friend, enemy, family member, celebrity or politician what’s your first thought about them? Envy, judgement, criticism, applause, joy, happiness, understanding, sympathy, disgust, anger, or something else? What do you feel about them? What do you know about their life and what they have been through? There’s a well known saying that you will only really know someone if you walk a mile in their shoes. Well, as a wheelchair user, how about if you wheel a mile in my chair. Getting inside the life of someone else isn’t easy and really we would have to live their life to truly understand them.

If it’s people you know, family and friends then you have an advantage. You can find out about the things that make them tick. You can discover why they are as they are. You can learn not to judge too quickly. If work colleagues then you have time with them to discover truth.

What about celebrities and politicians? One thing is certain you can’t trust what you read in the media. You will get two completely opposing views of the same people. It will seem as if that same person is actually two people. Logic will tell you that both cannot be true. So either one or both are lying, exaggerating or just plain wrong. Is the truth somewhere between?

Here is a radical thought: celebrities and politicians are just ordinary human beings with all the faults and failings that you and I have.

The truth then is probably that people are both extremes and neither.

The only way to know anyone fully is to walk in their shoes, wheel in their chair try to understand them. Suffer their suffering. Go through what they went through. But we can get a glimpse of people if we stop and look. If we ask questions and listen rather than judge.

Judge not and you will not be judged. Would you want to be judged by your own criteria? I know I wouldn’t.

Stop, Look and Listen and maybe you and I will understand others better.

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Never mind the quality feel the length

Is quality a thing of the past? That seems a stupid question, after all everywhere you look things are advertised as luxury, professional or pro for short. Advertising tells us that things are built better, stronger, more durable… yeah right, we all believe that don’t we? In fact we have become the quality control department for most products. Instead of manufacturers checking them, they are sent as is and fail in our home. We then send them back or bin them. Built in obsolescence. Never mind the lack of quality feel the short product life.

I have an NHS power wheelchair it’s a Quickie Salsa M2 and I am really grateful to have such an amazing tilt and tip wheelchair supplied. It’s transforms my life. But I cannot ignore that it seems to be very poorly made. I have had it for a year and well within that year the frame started to move alarmingly, what I mean by that is it’s become loose and rickety. Add to that the paint peeled so badly that rust was the main colour visible on the frame. I wonder if the NHS commissioners request poorly built? Obviously not, and when you consider that this chair is available privately and cost about £7000  for the setup I have, I do wonder at the excuse Quickie would have for what appears to be poor quality manufacture. I know the NHS get them for more nearer £4000 so do you think Quickie USA have two production lines? One that only applies one coat of poor quality paint and uses low quality parts that go to the NHS and a better line for private? I am of course joking, well half joking, they will make only one version. I can’t see how the NHS who are paying companies like Quickie millions of pounds can get such seemingly poor products from them. What is happening with the people who select these companies? Do they check on quality? Don’t tell me they are NHS products I told you these same chairs are available privately. They are merely bought by the NHS.

Don’t give me the argument about it being better if a private company is involved either, because I got my wheelchair through a private Company used by the NHS, Milbrook. So if private companies are really the way forward to drive up quality through competition and quality control I would be saying how wonderfully built my chair was. No, in reality all that privatisation does is add a profit layer into the mix. So that someone has to make profit out of the transaction. Ergo the end product has to be of a lesser quality because the amount of money being spent is the same, the product needed is the same, but someone in the middle is making a profit. Corners are therefore cut.

My first wheelchair was from a non privatised NHS wheelchair services. It was a custom built push wheelchair. It was really well made and lasted for years with no paint flaking off and nothing getting loose. Draw your own conclusions as to why the quality has dropped. Defend privatisation if that is your belief structure. I see no actual evidence it benefits us as users.

My guess is that my current chair will fail in a year or two and need to be replaced. The cost of that to the NHS and in hassle and time to me will demonstrate the folly of trying to cut corners on quality. Build a better chair in the first place, one that lasts and you repair it less and replace it less often. Car manufacturer’s learnt that years ago. They used to put very few layers of paint on. Cars rusted almost as soon as they left the showroom. Now cars are sold which boast of 7 and 10 year rust free warranties. Car parts used to fail within months, now they last much longer. The car manufacturers want people to keep buying new cars, but they do that by making new cars attractive and second hand cars hold value for re sale. Wheelchair manufacturer’s seem to have a very short term vision, sell their chairs to the NHS or desperate people who need them. Longevity of the chairs does not seem a factor, that is how it appears to me. Prove me wrong manufactures, show me how well you build your chairs.

That will not change until wheelchair users make a hue and cry and the NHS start to complain that they are not happy with the high failure rates. CCG’s (clinical commissioning groups) do you even track the failure rates of wheelchairs?

My fellow wheelies (wheelchair users for those who don’t know) take note of this. If you are an employee of the NHS and have any say in this process take note of this. If you are reading this in another country and have similar issues, take note. It takes a massive backlash to companies before they sit up and take notice.

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The sun shines on the righteous

We often say when it’s sunny, ‘The sun shines on the righteous,’ many won’t know the rest of that quote:

He causes his sun to rise on the evil and the good and sends rain on the righteous and the unrighteous.’ Matt 5:45 NIV

I was lying in bed today, there’s something not at all unusual anymore. Looking out at the sunshine, more unusual. Those words came to me. But the reason they came to me was this. Sunshine gives life, it brings joy, it lifts our mood. Without light, sunlight there is no life on earth. It’s a strange thing but I have never really enjoyed the sun. As a child I covered up, rather than wore shorts. As a teenager and young adult, I never lay on a beach soaking up the sun’s rays. My preference was rock pooling, swimming, surfing, snorkelling. I preferred activities to lying on a beach in the sun. Never really getting the appeal of sunbathing.

I was chatting to one of my carers yesterday, about the time before I was ill. I walked as much as possible. I would never drive if walking was an option. Walking was my preference. Even in the periods of better health I have had over the years then walking has featured a lot.

Strange then that I experience life on wheels now. It’s a very different viewpoint. Lower angled as I am 5’ 10” and in a wheelchair I am only about 5’. Bumpier on wheels and I am wider in a wheelchair; because my hips are not 600mm (my wheelchair width) whatever that is in inches. I suppose I do soak up the sun more now, both seated in a garden and in the park. Not on a beach, my wheelchair can’t manage that; some can.

I make no comment about which category I come into when the sun shines on me. But I do like it’s warmth. I was always very hot blooded when I was well. Now I cannot move as much, my circulation is poor, and I feel the cold. One good thing is because I get regular lymphatic massage my muscles have not withered away. I guess it stimulates them. One of my Carers said it looks as if my legs could just walk. That’s true, the leg muscles look reasonable. Not as bulky and well-built as they once were, but not withered either. So that’s good. I guess we tend to go a lot by appearances. A different carer made a separate comment the other day. I have very soft feet. That’s because I haven’t walked in two years. I suppose there must be some advantages.

Where was I going with all this? Enjoy the sunshine, enjoy the warmth, enjoy life, enjoy the light. There’s good and bad in all our lives. Make the best of it and find the enjoyment. The sun will still shine, occasionally, even in the UK. But even when it doesn’t, there are things to enjoy. Take care and find enjoyment in your live.

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They think it’s all over

Most people have heard the quote: ‘They think it’s all over, it is now.’ From a football match commentary a few years ago.

When you are suffering pain, mental or physical, long term illness, limitations or any long-term difficulties, you just want it to be over. Each morning you wake there is that realisation that you have another day of difficulty ahead. Some mornings that feeling can be so tangible it is like a physical weight on top of you, crushing you. Have you felt that? Are you there now?

The sense of ‘wishing it was all over’ can be so strong at times like that. It’s hard to keep going. You grasp around for something solid and find nothing. The feeling is like being in a stormy sea at night, everywhere around you there nothing to hold onto.

If that is where you are now:

  • Don’t give up.
  • Keep on reaching out.
  • There is hope out there in the dark.

I have been in that place a number of times over the years. I know what it is like and I know that it feels hopeless and unceasing. I realise that for me I have my faith in God. But God is there for anyone, not just those with faith, you too can call on him. We are all different, what we cling to will be different. The important thing is to remember there is hope however much you can’t see it. Just keep reaching out.

If you are struggling to get through. If you are fighting to survive day by day and wishing it were all over. My encouragement to you is this:

Even in the darkest night, the sun will come in the morning.

I also have a thought for those who are not struggling at the moment. Do you have friends or family going through illness or hardship? Be aware they may be floundering in the dark, reaching out. Be a place of comfort and safety for them. Remember not all illnesses are visible and not everyone makes it obvious when they are struggling. The fact someone smiles does not mean they are OK. They may just be very good at hiding their pain. I think one of the least helpful things you can say to someone who is long term ill is: ‘You look really well,’ just because they are smiling and looking positive. When people drown emotionally and spiritually it isn’t always visible.

If you are just wanting it all to end; hang on in there, reach out, there is hope in the darkness. If you are doing OK at the moment, be there for family and friends, be their support.

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