It’s good to struggle

My body is still letting me down big style, just as it did yesterday even though I stuck totally to my own diet when I normally ate it, but the pain levels kept peaking and my tiredness was clear to me if not anyone else, although I don’t think my acting skills were that good. I had managed to have over an hours sleep before Teressa and John arrived, but as is often the case it wasn’t really enough. Ever since Thursday, my diaphragm hasn’t settled at all, even when I woke up this morning the first thing I noticed was it was tight and uncomfortable, normally I would wake at least for the first half hour or so, without it feeling as though it is trying to cut me in half. Despite all the work that was done on the settee and the fact I know it is a million times better than it was before they resprung it, added new seat cushions and is now as good as any new settee, it is the worst thing I could possibly sit on for long periods of time. It didn’t matter how I wedged myself into the corner, or tried to lean rather than sit hunched forward, the best place to breath with ease, as the day went on I became more and more uncomfortable. I am actually beginning to wonder if the disaster of Thursdays Pizza had actually a large portion of settee mixed in there, that I just didn’t see at the time. I am still in no doubt that I ate too much and that was the cause of my pain in my stomach that followed on for days, but I now have a small doubt that it was totally responsible for what happened to my diaphragm and rib cage. I know it is impossible when you have conditions like PRMS and Fibro, to ever put the blame for pain on anything that we do, but it does quite often play a role, the hard bit is working it all out.

I think from my experience and those of others, once we have that diagnosis, that medical reason for what we feel, we are inclined to sit back and say there is nothing we can do, we just have to live with it, sorry but that is so wrong. There will always be things that we can’t change, but with them all being so personal it is often hard to give anyone advice or help with their personal conditions. I think it is one of the reasons why I shied away from all those forums that are out there apparently set up to help each other, the problem I found with all of them was always the same, one dominant voice that shouted louder than everyone else and if they didn’t personally make the discovery, or it is something that didn’t like or hadn’t worked for them, it was instantly tainted for everyone. None of us are experts on anything other than ourselves, but I do strongly believe that we should share our knowledge as you never know, it might help someone else. For me, the only rule I have ever had is it can’t cost anything. It’s OK, I am not going to go over all that again, as I honestly think I have said everything before. For me it has always been small adjustments persisted with that have turned out to be the things that make the most difference to my health. Unsurprisingly, food, sleep and relaxation have been the biggest when it comes to how I feel, followed by those things that make life easier or safer, like a new bathroom with a walk-in shower and seat. Dependant on our physical abilities and problems, we all will find different gadgets that help us in our daily life, along with different aids. My personal experiences has shown me that it is all too often the simplest and cheapest that work the best, like a pair of old fashioned nutcrackers for opening soda bottles where the lid it too tight and too small for my hands to cope with. The best gadget there is, despite being one that I have complained about continually, is our own brains. We alone have the ability to work out for ourselves what helps, what doesn’t and what is physically comfortable or not.

I think the worst and most hated gift I was ever given after I was diagnosed was well meant and given with love, but found it’s way out of the house and in the outside bin within minutes of my unwrapping it. Adams gran had bought me for Christmas a trolley so that I could use it to move plates, cups and glasses from the kitchen to the living room with ease and safety. I still to this day just writing that, can feel the hate and loathing I had for that object, irrational to many I am sure, but it is the perfect example of why no one other than the person who is ill, should ever buy something “to help” someone who has a chronic illness, without talking through the whole thing with them first. To me, it was this symbol of how she now saw me, as crippled and unable to cope. It put me into the pigeon hole that said I was a person to be pitied and required, despite the fact of just being in my early 40’s at the time, to be treated as a disabled ancient person. I know that was all in my mind, but our minds are us and far more easily hurt than our bodies are, especially when we have already had the final control over our lives taken away by our health. No matter how helpful other think they are being, we need to learn for ourselves what we need, what works and what doesn’t, not have it imposed on our lives. I try hard not to just give into anything, any new thing that appears has to be assessed over a period of time, before I know if there is anything I can do to improve it or if I need to start looking for something outside of myself. Pain is a symptom, not a sign that we need help, but that we need to assess everything we are doing that might be the cause and to see if we can change it or totally remove it ourselves. No matter how bad our memories, we all have the ability to analyse what is happening to us, if it has anything to do with our known conditions or if there is something else going on and outside help is needed. It is one of the things about modern life that I hate, disabled or not, this feeling that throwing money at it, is going to find the answer. Having lived through the 70’s and 80’s when gadgets seemed to be king and were bought by their thousands, just to land up at the back of a cupboard totally unused, it taught me that the answer is normally to hand and gadgets are usually the answer to a question no one has ever asked.

There is one other danger about being ill that I think many miss and many fall into, if you have something to hand that makes life easy, as humans are lazy and will use it. That may not sound as though it is a bad thing, but if it means that we stop using the little ability we have and simply give in to grab rails or two handled mugs, we lose those abilities faster than we should and our downwards path is accelerated. I can’t do that much, but I refuse to give in and stop doing what little I can. As I said to Teressa the other day, I don’t claim the higher level of the care component of my disabled living allowance, I have little doubt that I would be awarded it, but I actually can still manage to wash myself, brush my hair and so on, if I didn’t have Adam here, I might not. Adam doesn’t do anything other than tell me to do these things, as I totally forget, regardless of any gadget, reminder or alarm, I need that human there to remind me over and over and push me into to doing things, but once past that point, I manage. If I lived alone, well I would need to pay someone to come here and make sure I am doing what has to be done for my well-being, including in some phases eating. I can walk carrying a glass, or a plate, I don’t need a trolley, but if I had one, I might just use it some days and I think those occasions might just increase, slowly eating away a one more skill, faster than I have to lose it. If we don’t use our bodies to their full, we will lose those abilities, it is better to struggle than to not be able to do it at all.

I am sure the time will come when I will need more and more items that right now would make me feel bad about myself, I work on being enabled not disabled. I don’t have anything sitting here waiting for the day that will happen, well what is the point, these days we can buy anything online we need and have it here within 48 hrs. When the day comes I can’t manage that glass, well then I not anyone else, will find the answer to exactly what my problem is. One tiny adaptation might keep that trolley or two handled mug away for another few months, but they still aren’t here giving me an excuse to just give in. I know it might be hard for those who love us to watch us struggle, but I believe that letting us struggle is far more loving than running out and buying something that will take not just the struggle, but our ability with them and in some cases, our dignity as well.

Read my blog from 2 years ago today – 6/04/13 – So where next >

Thank you for all your comments following yesterday’s post, both here and on twitter. I spent the rest of yesterday as a kind of blank zombie, even managing to walk like one most of the time as well. My afternoon nap really hasn’t been making much of an impact recently, although I will sleep deeply for two hours, I wake with no real feeling of change, which I guess is what…….

A difference that matters

Yesterday I wrote a little about how illness ages us prematurely, I only scrapped the surface as I was quite honestly getting tired so I had to wind it into a close. What I didn’t write yesterday was something I think is actually really important to all of us with any debilitating condition and it is our total appearance. I have seen it for more years that I care to mention, from a long time before I even had my belief confirmed, that all the aids produced for us, from walking stick onwards, are all in general incredibly ugly. I can honestly say that the first walking stick I was given was so bad that I didn’t use it as much as I should have and probably made things worse for myself. I know it has to do with vanity, but if we were all honest, every person who owns more than one mirror is vain. The reason I didn’t want to use it was simple, it was made of silver coloured metal, with a large grey handle and even larger grey rubber lump on the end to stop it slipping, it was thick and clumpy and the majority of people I had seen with a stick like that were mainly the elderly. Every time I picked it up, I instantly felt embarrassed by it, 30 years older than my age and even more conspicuous than I already was, almost as though I was slinging on a sign around my neck that simply said “Old and useless”. I have always been a person with a distinct style, I have also worn black from head to toe nearly all my adult life, that stick against the dark me, stood out like a sore thumb, but it wasn’t until I started to have problems gripping things that they changed it to a stick that my hand was cradled on the top of, by luck it totally black, but more importantly to it’s looks was the fact that it lighter, thinner and very sleek looking. I suddenly had something that I was happy to use and to be seen with, as it didn’t change me into someone else, it allowed me to still look like me.

It was even worse with my first wheelchair, it was horrendous and we only went out with it a couple of time. Who wants to be sat on a red plastic chair with four small wheels, which meant the only way to move it was when someone pushed me in it. Being pushed around in a chair is the perfect way of making you feel worse than anything their illness could do to them and yes I did experience people speaking to Adam and ignoring me, as I clearly wasn’t quite right if I needed to be looked after in that way. Eventually, my walking became so bad, that it was clear that I needed a chair to be able to go to work as having someone pushing me, just wasn’t possible. With my illness now progressed to a point that satisfied the NHS tick list, a chair was ordered for me, at the time nearly all chairs were black so that part was wonderful, but again it look less medical and far more an accessory, as it had again that modern sleek look and was something you would have seen anyone of any age who was disabled using, it didn’t turn me into something I wasn’t.

Two paragraphs about two items, both saying very much the same thing, the design of many of the items that are supposed to help us, acutely do the opposite. I know that some might say that we should be grateful for anything that helps, but that just isn’t the real world and I would challenge them to be grateful to being made to feel like a freak. Too many people already fall into depression due to chronic illness and I am almost certain that the so-called “aids” play their part in that process. We don’t need reminders that we are ill, our bodies manage to tell us that without any problem, having it thrust upon us every time we move, along with being made to feel that we are suddenly ageing at the speed of a rocket, really doesn’t help anyone. I have seen it many times on TV that when it comes to children, their aids are made to go with their age and style. I agree that children and adults are different, but inside, well we really aren’t, in fact I would say that style is something that anyone over the age of 10 understands fully, none of us would put on a piece of clothing that we hated and then go out to important date, interview or night out, so why should anyone be forced into using something so alien to them, that it actually could make their health worse.

I have said it on twitter several times that it is the little things in life that matter, if we think about it most would agree that the things that make them the happiest aren’t generally the most expensive or showy things in their lives, they are the small and the personal. It is something that time and time again, I honestly think the NHS miss, if there was anything that could have pushed me into depression, it is, in fact, the NHS itself that has come the closest. They have an extreme knack when it comes to making you feel worse, I was lucky in some ways as I could afford to buy the smaller aids myself and replace the ones they supplied, my wrist brace is a perfect example, theirs makes you hand sweat in second and isn’t really adjustable, £30 bought me the perfect brace that I could wear all day and looked a million time better and allowed me to continue working. If those of us with disabilities were made to feel better about ourselves, rather than worse, well I think it is clear what the results might be, more happy disabled people with the confidence to be part of the world, rather than hiding away swallowing loads of antidepressants. It’s not rocket science, just because we are disabled doesn’t change us into people who don’t care about how we look and how we are perceived, if I had been given the right stick I might have walked more, done more and been fitter and more able for longer. It might have slowed down the process that meant I needed a wheelchair but even that proves my point as when I got the right chair for me, when I went out and about by myself, being confident about my personal appearance and my mode of transport, made me feel great and I was treated just as I was before anything was visible to the world, I came home even more confident and more alive than when I went out.

These things matter, not just to me, but to everyone out there right now at the start of this whole thing, maintaining our happiness as we slowly lose our health could well make the whole process slower as well, with more being active for longer and if the importance of that isn’t clear then I suggest you read back through my blog as all the reason to stay as healthy as we can are all right here.


Please read my blog from 2 years ago today – 18/10/12 – Sorting through the week 

I had always hoped that by the time I found myself in my 50’s which I do now that I would somehow have this crazy thing called life sorted out and that I would totally understand where I was going and why, strangely I don’t. Mind you I guess we all thought we would be there by 50, there being…..