We have a plan!!

Well today was D-day, the day I finally got to see the Pain Consultant. It has been 14 months since last time, and things have deteriorated badly in that time. I was really nervous about it, scared as well. What if I came away no better off than I was before? What on earth would I do? How could I cope?

It turned out to be a really good and positive appointment. Explained all my concerns and worries, worsening symptoms, toes curled over and so on. We discussed my current medication collection and the fact that it just isn't working as well. Plus I went through my researched suggestions for changes that might help. He has gone with them all, so lots of change over the next 6 months! Hopefully all for the better!

We're swapping out codeine, keeping the paracetamol though, and upping the Morphine MST to 45mg. Plus adding Oramorph as more potent backup, up to 3 times a day. Will take some time to get the side effects under control, but should be worth it. Once we've done that we're then getting rid of two meds, Amitriptyline and Fluoxetine and and replacing them with Duloxetine which should work better and improve things further.

Tonnes of withdrawal in coming months, but should be more than worth it. The overarching idea is to upgrade some of the components in my cocktail of drugs to more potent ones, without significantly worsening the side effects and hence hopefully improve things for me longer term. I just told it like it is and said that it would be very nice to be able to do the few things I really want to do, like speedway and archery. Not asking for miracles just not lose the little bit of mobility I have.

Seeing Consultant again in 6 months, with 3 month telephone appointment to check how it's going. 

We have a plan.... fingers crossed it will be successful!!

Plates of meat

Feet. You know those things that help you walk. Imagine if you will how constant pain over time makes this basic, simple movement harder and harder. That's the situation I'm in and things seem to have gone downhill even more rapidly in the last 6 months or so. Is the fact that this coincides with my pain meds failing badly to cope with everything CRPS throws at me a coincidence? Wish I could say no but....

Having problems walking of course is nothing new and has always been a horribly painful affair. Since CRPS struck I rapidly became wheelchair bound, although I fought it like hell. I can't walk in the true sense of the word, but shuffle along for no more than a few metres, either grabbing onto hand rails or being completely supported by Eric who wraps his arms around me. I keep my legs as straight as possible, essentially moving from the hip where there is no pain. My right foot in particular has bent inwards more and more over the years. Oh and the big toes on both feet stick up alarmingly and I simply can't get them to move down. Balance is 'interesting' to say the least!

What has become extremely worrying is the way that I seem to be able to bear weight on an ever smaller area of my foot. My feet have been slumping over on the side of my velcro fastened shoes for years, but it has now got to the point where I am only putting the outside edge of my foot on the floor together with the heel. At it's worst, I can only manage to put part of my heel on the ground, the rest of my foot is in the air. The right foot as always is worse than the left but the left is rapidly catching up as it has to constantly do more of the work. I can't stop or slow down the decrease in function. It's as simple as that. If I do try to put full weight on my right foot it feels as if a stake is being driven through the centre of it. Being unable to get to see the Pain Consultant for over a year hasn't helped because my GP won't (well, can't is a fairer reflection) adjust my medications or change tham. So I've been struggling along really badly and it's taken it's toll. 

I said about the right foot bending inwards. This has become more pronounced but there's another more worrying development. When I sit with my feet down I now rest on my nails on my right foot. I got Eric to have a look and three toes are now curled completely under.  It is a really horrible feeling, especially when my big toe is pulled right up. The worst thing is that I can do nothing about it, can't move any of the toes at all. Don't see how I can fight it, although I'm desperately hoping that my Pain Clinic appointment will bring additional relief and mean I can use more of my foot. I suppose I've done well to keep my feet as 'well' as I have for so long. Not much consolation though....

I am scared that if something doesn't give my mobility is going to become completely compromised and I won't be able to weight bear on my feet at all. The thought is absolutely terrifying! I am trying to put as much of my foot down as I can in the hope things will improve. Sadly I realistically have little, if any way of improving my situation. 

There is a wider issue of course and one that is becoming worse with the new Legislation the Government is forcing through. Waiting lists just to see a Consultant are becoming longer. It seems to take forever to get a firm diagnosis for CRPS especially in the very early stages. When it is during the early stages that any hope of remission is at it's highest. Not only did my diagnosis come too late, CRPS had already started to spread. The same can be said for so many who have CRPS. Of course there are no guarantees that an early diagnosis leads to remission. But at least you'd have the chance? 

Of course the same applies once you're in the system as my situation highlights. It seems utterly ridiculous to me that there seems to be no prioritisation in place to take account of the severity of your condition and appointment waiting time. I'm not asking to jump the queue. Why is there no slack in place to allow for urgent appointments? My GP has written to my Consultant at least three times, but hasn't even received any advice to tide me over till I actually see him. I can't be the only one spending months desperately waiting for an appointment, in the knowledge that things are getting worse and there is absolutely nothing I can about it.

There has to be a better way doesn't there?

Taking aim?

I'm expanding my horizons, getting back into something that I did several years ago, then gave up because I couldn't make the step I'm making now. All sounds a bit cryptic?  Yesterday I joined an Archery Club!

Anyone who reads my blog knows that Pre-CRPS I was fit, active and sporty. I played golf off a 5.6 handicap both at club level as well as representing Essex. I have at one time or another played Badminton, Tennis, Squash, Hockey, at Junior County and later Club level. When CRPS struck all that was taken away in an instant. It was devastating and one of the biggest blows that CRPS made to my life. I was desperate to find a sport that I could still do. The options weren't great, unsurprisingly, when you're stuck in a wheelchair with your legs elevated in front of you. In many ways it would have been so much better to be paralysed. That way I could just shove the legs out of the way and get on with life, work and sport. Just another cruel aspect of CRPS.

After lots of research Archery seemed a good punt. We found a Disabled Sports and Social Club nearby where I could go and try. After the first session I was hooked. Eric had a go as well so it became something that we could do together again. We were taught how to shoot, safety etc. and it wasn't too long before we headed to an equipment shop to be kitted out with our own bows. I also tried air rifle shooting at the same club but it wasn't a patch on archery! Over the next year or so we went along each week. Unfortunately numbers doing archery dried up, to the point that it was just us, and the coach stopped going as well. It was time to find an Archery Club!

Sadly this didn't go well. There weren't many near us but we took the plunge and went along to one. It was a disaster. I was the only one in a wheelchair, which wasn't the biggest problem. They shot to a whistle. One person steps forward, shoots their arrows, whistle goes, you swap to the person behind, they shoot, whistle goes again, everyone goes and gets their arrows. A great system for able bodied people but horrendous for someone who had to try and manoeuvre into position each time. They made no allowance for me being in a wheelchair, I stuck out like a sore thumb. It was horrible. Having been put off completely, we gave up and bought a target, stand and net for the garden and shot irregularly at home. Eric breaking his arm threw a huge spanner in the works, so that largely put paid for us shooting in the garden. To this day it hasn't healed and won't so he can't shoot anymore. I didn't like to ask him to get me set up to shoot because I didn't want him to have the hassle. He didn't mind but I did. So in the interim years I have done very little.

I've talked about me falling apart mentally in recent months in other posts. Speedway proved to be the buzz that helped me fight through that and come out the other side. I started to think about the off season, which runs from the end of October through to mid March. I go out even less during the winter as there is no speedway and have nothing to really look forward to. We go to Lakeside once every couple of weeks and have the occasional lunch at a local pub. Apart from that I'm stuck in my chair in the house. What is there to look forward to? Not a lot. I needed something else which would give me a buzz and something to look forward to? The obvious candidate was archery. But how to do it, with other people and on a (CRPS permitting) more regular basis? The answer of course was to dip my toe in the water again and try to find an archery club that would be supportive of disabled archers. 

The power of Twitter has made this possible. I sent a tweet saying simply:

  "Does anyone know of an archery club that accommodates wheelchair archers in (my area)? Please RT"

I watched as it was retweeted time after time after time. Within 10 minutes I had several people from all over the country recommending my next course of action, or clubs that were in my vicinity. I am now in touch with a Paralympic archer about to take part in London 2012. Simply by sending out that rather innocuous looking text. Amazing! It was great to be reassured that archery clubs are friendly places and that my situation wouldn't be a barrier. Within 24 hours I was in contact with an archery club that sounded absolutely ideal. I went to their Open Day yesterday, and signed up before I left. I have found my ideal club! Exciting times!!

There are so many pluses. You can shoot 364 days of the year because the club owns the land. Ideal because I'm not tied to a specific time or day, I can choose to go when I feel up to it. I won't be able to go very regularly because of the inevitable punishment, but to be able to go at any time is brilliant. Of course there is the social side of things as well, which will be a real bonus as I'm stuck in the house most of the time. We can park the car at the back of the field to improve access. To be honest the car park is right next to the field, but it's a bonus. In the winter I can shoot on Friday evenings. They immediately let me have my own target despite the fact that lots of people were trying out Archery. The same will happen indoors meaning I can stay put once I'm in place ready to shoot. Disabled toilets at both venues, indeed both sites are totally wheelchair friendly. The people were so friendly and welcoming. Being in a wheelchair didn't matter. Indeed when I was introduced to the Chairman it was me who mentioned my legs being up being unusual. His response was 'Is it?'. If further proof was needed that this was the ideal club for me, that was it. Wheelchair, what wheelchair?

Guest Post - A carer on social networks

What follows is a guest post which resonated very strongly with me.  It highlights what I have come to realise, namely that we have to look out for our own mental health first and giving support to others second. I got the balance wrong and paid the price. Thankfully I have worked my way through it and will be more careful in future. I hope it helps others avoid 'falling apart'. Have a read, I thoroughly recommend it...

A carer on social networks

When is enough really enough?
I am a huge fan of social networks such as twitter and Facebook but are they really harmless places to socialise?
Oh I know about the dangers of stalkers, pedophiles etc and the danger they represent but what about to 'ordinary' everyday users?
I have come to realise that these social sites are used for many different reasons by many different personalities, maybe that is what keeps it exciting for us.
I have however been made to look more closely at what can happen to the 'carers' of twitter recently.
Carers are the people who often have problems/issues of their own, be that illness, disability, emotional issues etc. this doesn't surprise me as I have always believed those most willing and able to support others are often those who have experienced things in their own lives, maybe that is why they reach out to others or why others reach out to them.
This is a good thing and thankfully people do still care enough about their fellow human beings to interact in this way. But it carries with it responsibility not only to the person you are helping but first and foremost to yourself.
I have seen several of my friends get overwhelmed by the demands placed on them recently. 
If you dread logging onto a social network for fear of what may be asked of you, or logging on to check on your 'friends' takes precedence over other maybe more important things then you need to take a step back and look at what you are doing and what you could do differently.
Your own emotional and physical health must always be your priority or you will find yourself rushing headlong Into burnout.
Burnout is a very real problem and should be taken very seriously. 
Maybe it is my background in Psychology That has made me so aware of how awful it can be and the warning signs we should be looking out for.
I reached a stage in my working life where I used to have to have stern words with myself before a client came to get my head in the right place to work with that client. 
There were times when a feeling of real dread would come over me at the thought of the days counselling ahead. Admittedly I had health problems to contend with as well but I pushed on for far longer than I should have done.
I have to admit I wonder if we allow ourselves to get so involved in others issues or causes as it enables us to put our own issues on the back burner for a while,
Whilst your head and your heart is feeling for and at times fighting for other people or other causes you have no time to look at yourself and what may be going on in your own world. 
It's a clever distraction but don't be fooled, whatever it is you are covering up or running from will need facing one day and you will have depleted energy with which to face it if all of your energy has gone to others.
Don't stop supporting or caring about your fellow human beings as it is what makes you special and undoubtably it is appreciated but do please keep your own health and well being uppermost in your mind, taking a step back now and then is preferable to having to cope with burnout. 

Used with permission from Penny's Points blog.

Uplifting

They say a little bit of what you fancy does you good. It's certainly very true for me where speedway is concerned. What a tonic last night was. I feel a different person today, albeit one being well and truly punished for my 'guilty' pleasure.

It was so nice to chat with several people on the way to my 'parking spot' beyond the main stand. The speedway family is a wonderful one, both in real life and on Twitter. It was so lovely to have been missed. You don't need to know anyone's name, indeed I have absolutely no idea of the name of the lovely woman and her husband I always chat to once I'm in position. Doesn't matter, we have the wonderful connection that is speedway. She comes over, Kai always gets some of her burger. We then chew the fat about all things speedway. How many other places could you go where that happens? Especially to someone who is disabled and in a wheelchair. Most people look away or gawp when we go out. At speedway it doesn't matter. A real bonus this season is that friends I've made on Twitter come and find me to say hello. Steve did last night and it means an awful lot that people take the time to come and see me. 

Already I could feel my spirits lifting, it is impossible for me not to become enthused when I'm talking about speedway in general and my team in particular. The gang arrive, the chaps (whose names I do know!) who I have sat next to since I started going to speedway. The banter really gets going and we're all set. We've decided that we'll will win by at least 8 points, set the world to rights on various speedway issues and debated the pros and cons of a particular rider being at number 5 when he hasn't been riding very much. 

As soon as the meeting gets going it's like being on a roller coaster, the adrenaline flows. The roar of the engines, the smell, everything comes together to produce an exhilarating experience. I forget everything else, including the pain, as I watch four men go hell for leather on bikes with no brakes at high speed. A race consists of four laps and is over in less than 60 seconds. But so much can happen in that time. Just enough time to write down the scores, dissect that race, predict the result of the next and off we go again. It's impossible to find the words but speedway makes me feel alivenoise nothing else in an existence that is so dull and restrictive. 

15 heats (and nearly two hours) later and it's all over. Only now does the pain that has impinged more and more as the time has gone on really hit me. The hell of getting back in the car, the tortuous journey home and the unbelievable pain as Eric tries to get me back in the house when I can't put weight on my right foot at all and only on the side of my left. Back in the comfort of my chair, despite how awful I feel, the buzz is still there. That same buzz that I am still feeling as I write this. 

To someone reading this I must appear absolutely bonkers to go through what I do and all the punishment that lasts for days after. All I know is that the darkness I was feeling has lifted, the world seems a much happier place and most importantly I feel able to rejoin the battle and tackle CRPS head on again. I don't care how bad I feel as I type this, indeed I'm not quite sure how I am! Speedway is my extra drug, better than anything you can on prescription. Roll on the next dose!!

Wobbly times

My last blog post highlighted the battle I was having with myself mentally. Since then I have had a good positive period when I felt like the old me. However in recent days I have found myself starting to sink again. I spotted the signs this time so it hasn't caught me napping like the first time. It has however prompted some soul searching to try and work out what on earth is going on!

The brain is fantastic isn't it? So protective, it gently wraps us up in layers of cotton wool or whatever the equivalent is for the mind. At the core lie all the horrors, those things you daren't think about or even contemplate. Too awful to bring to the surface, the absolute raw truth of what we face is well hidden by our brain. When it feels we are ready, a bit like an onion, a layer of cotton wool comes away uncovering something previously too difficult to admit or come to terms with. In the last six and a half years so many layers have been removed. Each one has come with an acceptance (often grudging) that I can no longer do something or admitted that my quality of life would be better if I stopped being so damn stubborn, 'give in' and accept more help in some way. We are talking major life changing matters, those things you never want to accept but must if you are going to move on with your life. 

The realisation that you're never going to be able to work again no matter how much you'd love to be able to. Others knew many months before I could accept that my working life was over. The acceptance that you simply can't walk anymore and the dreaded wheelchair really is your only option if you are to get out of the house. The fact that you've completely lost your independence and are reliant on others for everything. That at the age of 39 you have to use a commode because you simply can't carry on dragging yourself up the stairs each time you need a pee. That you're stuck with the life you now have, rubbish as it is, and somehow have to make the most of it. I could go on but you probably get the idea.

I haven't mentioned anything medical yet. Surprising? Well yes, because CRPS is incurable so you have to accept that you're not going to get better. There are various drugs, procedures and so on that can be tried. They won't cure you, they might reduce the intensity of your symptoms if you're lucky. If It's caught early enough you might even manage to go into remission. Very few manage remission in my experience but I'm sure there must be some out there somewhere.

I've seen Consultants from various disciplines and as a result been subjected to all sorts of blood tests, other tests and Endless MRI scans. I've seen three different pain specialists including the top man in London. All concluded there was nothing they could offer which would improve my condition.  I've also been to Moorfields for investigations into severe eye pain, again CRPS related. We've tried all sorts of different drugs, I've had infusions, nerve blocks and nothing has touched my CRPS. The cocktail of drugs I take now only does so much and in recent times they have been doing even less.

Until very recently I had come to terms completely with the realities of my situation. Ok, there is nothing they can do for me, I have just got to get on with it. Perhaps in the future there will be something that will help me. However mentally I was in a comfortable place, fighting as hard as I can to not let CRPS beat me. Getting the most I can out of life despite what it throws at me. Many comment on how positive I am, my fighting spirit. I am the same person I always was, just stuck in a body that doesn't work anymore. Some have said I'm an inspiration, which I neither understand nor believe.

Turns out there was another layer to come off, brought on bizarrely because I have made some wonderful friends, including fellow sufferers on Twitter. I have always done what I can to support anyone if I can. In my nature, why I became a teacher. Having had CRPS for the time I have, I have the proverbial tee shirt. If I can allay fears or explain how something works I'm more than happy to do so. In doing so I have however uncovered this new layer. Where before it was just me, my drugs, tests and treatments I now hear about others'. The infusions they are having, drugs they are trying and so on. None of it makes me feel jealous, or makes me think I'm missing out so what's the problem?

It has completely thrown me, in the sense that it has really brought home just how non-existent my options really are. We can tweak the drugs, but we've been doing that for years without great success. The treatments people are having aren't any different to stuff I've had in the past. I am delighted that my friends may get some extra relief, really gutted when they don't. So why on earth am I fighting like hell to stay afloat myself?

I've come to the conclusion that my acceptance of my situation medically was limited. My wonderful brain was shielding me from what is actually a horribly frightening place and certainly a depressing future. This is going to get worse as the drugs struggle to cope as well. Maybe there will be a time when nothing helps at all. My quality of life which has gone down significantly in recent months isn't going to be radically improved. Indeed it is only going to get worse. When I go to the appointment at the Pain Clinic in September there is a more than a fair chance that my Consultant is going to look at me as he has so many times before in the last few years, and admit that he has nothing else to offer me. Where do you go when you have no options? That is what I must get my head round so that I can get back to where I was. Quite how I'm not sure right now. Help!

NB.

I must stress that the last thing I want is for anyone to treat me differently, to not tell me about what what's happening to them. At the moment I have nothing to give and must focus on myself. Please remember I still care though.

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!!