When the wheels come off

It's the early hours of the morning as I write this. Given up on trying to sleep, my mind is too busy, too full of stuff that is normally well hidden and under control. What has stirred these thoughts up? A conversation on Twitter, no different to any other, but nonetheless it brought my world crashing down around me. Thoughts that haven't entered my head for so long are buzzing around like crazy and seem so hard to push away at the moment. 

I haven't cried like I did a couple of nights ago for so long. My positive outlook, coupled with stubbornness and the flat refusal to to let CRPS beat me has remained absolutely resolute for so long. Ok, we all have days when we feel down, usually a stiff talking to myself gets me out of it and back on an even keel. This was different and I'm still trying to fight my way through it. Perhaps writing this will help?

This is as far as I got. Wasn't able to write anything else. Now, many days later I am going to try and put it into words, for myself as much as anything else.

I suppose it's not surprising really, the last few months have been particularly bad, even by my standards. I'd got myself all ready to have a good discussion with my pain consultant, had made lots of notes, researched a couple of possible additions or substitutions that may help me manage my pain a little better. The meds haven't been helping as much for a long time, although I've kidded myself for months that they were. My GP is constantly frustrating and downright unhelpful. He doesn't want to prescribe anything else, which on one level is fine. He is out of his depth, doesn't know what to do with me, but is to arrogant to say so. It would be easier to deal with if he just admitted that. Instead he is just dismissive, doesn't even listen. Wait to see what your Consultant says. He also constantly witters on about reducing the number of medications I take. I have given up trying to explain that every drug does something, it isn't just about pain relief. it doesn't matter that the Consultant is very happy with the collection I have, still he goes on constantly.

To learn that I couldn't see my Consultant, when I was desperate to try and find some relief was utterly devastating. The huge wait for the new apointment seemed so far away. Even though it was brought forward somehow that didn't help. How am I going to cope till then? Other events have conspired against me, not least the disaster that was trying to get out of my broken chair. I am still trying to improve the limited mobility I have in my knees and all that time stuck in my time obviously did far more damage mentally than I would have thought. 

I had no inkling that I was about to fall apart. I was, I thought, coping with all that life was throwing at me. As I have done for so long. This on top of the nightmare that is my life anyway. I wouldn't want anybody to live as I have to. Well it isn't really living is it? When you get down to the bare ones, all I really do is exist. Struggling from one day to the next, with some excitement every now and again. Going to speedway being the main one of course, but then that comes at a terrible price. Indeed doing anything and everything, even things that seem completely unrelated to my legs bring with them yet more pain and exhaustion. I can't hug my husband being confined to my chair 24/7, can't snuggle up in bed. Sex life? No chance! I spend my entire life looking at the wall in front of me or out of the window. Can't see much other than the two huge Leylandia trees and the window and roof of the house across the road. Life goes on out there, but I am neither part of nor party to it. 99% of the time the only person I physically talk to is Eric. Apart from that I am alone with my own thoughts, too much time to be honest.

My life has become enriched by the wonderful friends I have made on Twitter. It is great to know that there is always someone who will happily chat about anything, I just have to tweet something and someone will reply. With Twitter has come contact with others who have CRPS or other chronic conditions. It is in my nature to help and support people (I was a teacher don't forget), so lots of my time has been spent supporting others, giving advice if I can. It's ironic that it should be the thing that has so enriched my life, that has ultimately brought me so low. I am used to seeing people talk about treatments they've tried, or will have. Appointments they're going to, drugs they're taking and so on. Nothing unusal. Perhaps I had been giving too much of myself, leaving me vulnerable. Won't ever know. 

I suddenly seemed to be fixated on the fact that others were being prescribed medications that I thought I should be getting. Why were they being prescribed to them and not to me? It wasn't fair! My need was greater than theirs! I had no chance of getting hold of anything anytime soon. And anyway I would be told that there is nothing else they can do for me. As they have done for years. How come others had options when I had none? It's so hard trying to put the feelings into words. I didn't care about anything else other than my perceived injustice. What was the point of fighting? The downward spiral had begun and before I knew where I was I was so down on myself. I sat just staring into space, no interest in anything. No interest in food, no interest in doing anything, I was going through the motions. Got no joy from anything, even little Kai's antics couldn't raise my mood. Eric couldn't reach me, had no answers. I couldn't face Twitter, had nothing to say, couldn't deal with the banter etc.

My gloomy thoughts turned to the way that Eric and I get no support from anywhere (OT, Social Services, GP etc). CRPS by it's nature takes all control away from you, you never know how good or bad the pain will be from day to day. Whether you will manage anything or simply have to sit in the chair and fester. For someone who liked to have control it is an ongoing nightmare. We have been left to just muddle through, there is no support, no way of getting help quickly. I went to A&E once when things were really bad, but they couldn't give me anything or do anything. They waited until the pain reduced sufficiently that I was no longer tachycardic and sent me home. Never gone back, no point. It's no wonder I was feeling so low, all those thoughts, worries and concerns were surfacing, being dwelt on and emphasised. No matter how hard I tried I couldn't kick myself out of it. I didn't have the strength, the energy or to be frank, the inclination. 

The turning point happened last night and makes no sense at all. Perhaps these things aren't meant to. It was speedway and I frankly didn't care whether I went or not. Now that really isn't me!! I was going through the motions as with everything last week. The weather was on and off, but we went. Absolutely threw it down all the way there. Now normally turning back would not even have been muted. Saw a photo of the pits which looked really wet on Twitter. Made the decision and told Eric to turn round and go home. It wasn't until I was home and sitting in my chair that I realised the change in my mood. For the better! 

Crazy really because it flies in the face of my 'line in the sand' stance on going to speedway. I guess I had grabbed some control of the situation. Control being the thing I have so little of. Who knows? All I know is that I woke feeling better today than I have all week. Not back to normal by any means but heading in the right direction. Going to be focusing on me for a while and trying to do things that are positive like going in the garden this morning. One thing is for sure, I'm fighting again!!

Knee trouble

One thing leads to another, life is like that isn't it? Cause and effect. Problems and consequences.

In my case broken chair has resulted in more broken knees. Well not broken so much, more riddled with CRPS and therefore more pain, swelling and reduction in movement. I didn't really think I was actively using my knees when trying to egg out of my chair. Perhaps I wasn't but regardless CRPS has seized the opportunity and has worsened, especially in the left knee. 

It took a while to get moving again once my chair was fixed, but as soon as I felt able I went back to dragging myself up the stairs when necessary. It is surprising just how much stiffer and more painful my left knee is. It was incredibly hard the first time, and I needed lots of help from Eric. I am really struggling but will persevere. I have to try and improve the movement back to where it was before the chair broke. It wasn't great by any means, but better than now. If I stop being able to drag myself up the stairs it's game over. Can't have a bath, use the toilet.

We went out today, the first time I've been out in goodness knows how long? Must be a month. I can feel the impact on my knees there too. I find it very hard to relax the legs at all in the wheelchair, well anywhere to be honest. The pain makes the legs tense up constantl. I have to make a physical attempt to relax them. Normally in the wheelchair I try to help this by sitting with a slight bend in the knees, Not much, but enough to just take a bit of pressure off. Couldn't manage that today, found it impossible to achieve that smallest of bending movements. As with getting up the stairs, if I can't use my wheelchair then it's most definitely game over. No going out, no gardening, no speedway. No life....

A complete lack of independence

You don't realise just how much you take something for granted, yet rely on it so completely, until it breaks. Such is the case for my electric reclining chair. When I started this post a day or so ago, largely as a distraction technique for the pain, I was feeling about as bad as I have ever felt since late 2005 when CRPS struck.

It may be difficult to understand why my chair is so important. Normally you sit down without thinking. Indeed during the course of a day you'll get up and sit down countless times. At work, at home, in the car, on the bus and so on. By contrast I live in my chair, day and night, apart from when we go out, I have a bath or I go in the garden. Sleeping in bed has been impossible for years, so my chair becomes my bed at night. The back goes down more than normal, we add a pillow and I'm set for the night. It is the most comfortable place in the world, the only place where my pain eases to the lowest level it can become. It is the place I yearn to get back to at the end of a speedway meeting.

It was absolutely devastating on Friday when I pressed the button and nothing happened. It is hard to put into words my feelings when I realised that the chair was broken. Initially you panic, 'oh God, I can't get out of my chair' and 'what the hell am I going to do now' but this is quickly overcome by more pressing thoughts of 'I have to get out my chair or I will end up wetting myself'. The latter focused the mind rather quickly! 

So how do you get out of an electric chair that won't work and is stuck with the leg rest up? Tricky if you're able bodied, but imagine my situation, where my legs are a pain in more ways than one and my balance is rubbish. Plus if I end up on the floor there is no way I can get myself up, even with Eric's help! Leaning forward was out, I'd have ended up in a pile on the floor. No, the only way was to bail out sideways, over the arm. Those of you who follow me on Twitter will have heard me talking about my 'gymnastics'. Well this is what was involved!

1. Use arms to push myself round so that my legs are really close to the left arm of my chair.
2. Eric carefully lifts left leg onto arm of chair.
3. Use arms to re-position myself so that I am now facing left.
4. Eric carefully lifts right leg onto arm of chair
5. More shuffling about using arms to get my legs as far over the arm as possible.
6. Try and find something to hold onto with left hand. Never really successful!
7. Push myself up using my right arm..Tough as my bottom is below the arm of the chair
8. Eric supports the chair so it doesn't topple. Keeps me from sagging back down.
9. Good push off with right arm, plus Eric pushing, I end up on arm of the chair.
10. Eric dashes round chair and helps me to stand. Both breathe a huge sigh of relief!

Thankfully gravity helped getting back in. Sit on edge, let yourself fall back. Use right arm to rotate body so legs land in the right place. Easy, well easier...
I lost track of the number of times we had to do this between Friday and Tuesday morning when the wonderful man came to fix my chair. What was surprising was how easy it was from the upper body point of view. I must now be so strong from years of my arms doing the work my legs should. Unsurprisingly the toll on my legs was severe in the extreme, with swelling appearing on top of swelling on top of... well you get the picture. I rapidly reached the point where I couldn't weight bear because the legs were so bad. I don't think the pain has ever been as bad as it was. Oh and of course I'm being suitably punished now! As always we worked on our technique, improved it, and got it off to a fine art in the end. As with everything, humour got us through. I can only imagine how ridiculous I must have looked. Don't think the engineer who came to fix it understood why we were both so incredibly grateful. Probably just as well!

The whole episode has made me realise just how vulnerable I am, and how I am totally at the mercy of the equipment I use. It turned out that the cause of the failure of my chair was it's power lead that had somehow got trapped and been rubbed right through. If that had caused a fire when Eric wasn't here, I wouldn't have got out. Simple as that. A sobering thought.

It made me acutely aware of just how restrictive my life is. I am used to (if you ever really are) being housebound, apart from the few occasions we go out. Of course I wouldn't manage to do anything were it not for Eric. But I became completely imprisoned by my chair, unable to even contemplate going in the garden or going out. Couldn't do anything other than use the commode. A pretty miserable existence.

As a rule I try not to think about the future. The age gap between me and Eric means that at some point I will be on my own. We have no children, so it will just be me. I've already accepted that I'll end up in a care home somewhere, how on earth could I continue to live here? It wasn't a pleasant thought at the best of times, but losing power to my chair brought home just how awful it will be. Just how reliant I will be on the staff. Being completely trapped in my chair, essentially being left to fester. Eric does so much to enrich my life, but even he couldn't do anything when my chair gave up. You hear horror stories about people in care homes being left to soil themselves and goodness knows what else. Is that my future, what I have to look forward to?

Whatever next?

Are there times when you think 'give me a break'? Well that's how I'm feeling right now. It seems to have been one thing after another in the last few weeks. None of it directly related to CRPS. But all conspiring to make life that little bit harder. 

First there was the problem with my Pain Clinic appointment, where we had to postpone because I couldn't see my Consultant.  He wasn't seeing patients, but instead I would have just seen a nurse. Totally useless so we had to postpone.The rearranged appointment came through the post, scheduled for the 1st November, some four and a half months away! We've managed to get it pulled forward to 18th September but that's still a lifetime away, struggling as I am at the moment.

Then I started getting pain whenever I bit down on the left side molars at the top. As I haven't had a filling before I didn't know whether that was the problem or not. It was intermittent, sometimes there, and other times there was no pain at all. Nothing for it, time for a trip to the dentist. Now there's an adventure in itself!! The surgery is essentially a converted bungalow, so getting into her room is an utter nightmare. Tiny corridors, little manoeuvring space. I tell you, I'd be an advanced driver if there was such a thing for wheelchairs!! Lots of backwards and forwards movements, plus Eric lifting the wheelchair round a bit! At least she examines me in my wheelchair, which saves that struggle.

Turns out my wisdom tooth is trying to come through more than it already has but there's a molar in the way! So I face having the wisdom tooth out at some point when the pain becomes unbearable. Thanks to morphine that will hopefully a long time away!!

In the last week there was all the worry and stress with my health scare, the topic of my last blog post. Thankfully that has turned out to be nothing to worry about. Hooray, a good outcome!

Then to top it all, I went to put the legs down on my reclining chair late yesterday afternoon, as I needed the loo. Pressed the button. Nothing. Dead as a dodo. Eric did all the normal checks you do when something electrical doesn't work, all to no avail. We were faced with the problem of me being stuck in my chair. How was I going to get out? Without causing further pain, or worst case scenario, me ending up on the floor screaming in agony with Eric unable to get me up on his own. It would have been funny, had it not been such a serious problem.

I am now getting out of my chair over the left arm. Eric helps get my legs up onto the arm of the chair. He then hangs onto the other side to stop it tipping whilst I push myself up to a sitting position with my right arm. Is shows just how strong I've become that I can even manage it once, let alone every time I have to get up. Getting back in is much easier, gravity does most of the work for me. It must look utterly hilarious though, perhaps we should sell tickets? Of course my legs are thoroughly unimpressed by this unusual activity and are complaining more than usual. 

Fortunately for us the chair is under guarantee so they are coming to fix it on Tuesday. In the meantime I shall continue doing my gymnastics until my arm and shoulder give up. Hopefully that won't be before Tuesday or life could become even more 'interesting'.

What else can life throw at us? The mind boggles! One thing's for sure. I'll keep battling on.....

My health scare

Have had a health scare over the last couple of days, which thankfully has proved to be something we don't need to worry about. Thanks to my wonderful twitter friends, who as always support me and care, so only fair to let you know what it was. The things I have to put in print!!

For the last few days my stools have been black, so obviously we have both been really worried about what this might mean, and worse, the long term consequences. I was particularly worried because my hopeless mobility makes it nigh on impossible to easily undergo any of the tests we feared might be necessary. I knew that Eric was worried, especially when he admitted he was worrying that it might be cancer. The fact he was worried made it worse for me because he's Mr laid back normally. That thought had never occurred to me, I though stomach ulcer the culprit.

Thankfully I was given a clean bill of health by my GP this morning, who is not concerned in the slightest, believing it to be related to all the medication I take. Huge relief all round, but, despite it being good news, threw me (andEric) completely and has taken all day to get my head round it.

So there we have it, it's all about the colour, but sometimes colour isn't always as scary as you might think...

Appointment has moved.... A bit!

Well it appears that phase two has been successful in that my appointment has been moved forward to 18th September from 1st November. So why do I feel just a little bit disappointed? Yes I've gained one and a half months, so now will only wait three months to see my Consultant. Don't get me wrong that is great news and I am really grateful to PALS for managing to bring it forward that much. However, struggling as I am, three months still feels a lifetime away. 

It is also strange how the first available appointment was 1st November when Eric phoned up and spoke to the Pain Clinic. The earliest available appointment mysteriously became 18th September as soon as PALS got involved. There may still be hope. The letter I received today with the new appointment was written on Friday, so my Consultant will not have yet received the letter from my GP. Will it move again once the Consultant reads my GP's letter?  No, I'm not holding my breath either...  

It does raise a wider issue, namely just how flawed the NHS appointment booking for outpatients is. There seems to be no consideration given to the severity of the patient's illness. It really is a case of first come first served, and if something happens so you cannot be seen (through no fault of your own) you just get shoved right back to the very end of the line. You would have thought that some slack would be built in to allow for those, who are urgently in need of help, to be booked in at short notice. Not this moveable feast, depending on who happens to speak to those booking it. Particularly if, as seems to be case with me, my GP either has no idea what to prescribe, or is not allowed to prescribe something that might help. 

Assuming the appointment remains at 18th September, it would be wonderful if my Consultant wrote back, or God forbid, got on the phone to my GP, and suggested something that we can try in the ensuing time.That would be immensely helpful and the three months that lie ahead of me would pass a little quicker. Sadly I'm not holding my breath about that either..