With pleasure comes pain....

It seems aeons ago when I last managed to write a blog post. Largely because of the impact doing archery has had on me, plunging me into the battle that is trying to recover enough before I shoot again. Ok I admit I've made life harder for myself by trying as I have to squeeze a second session in between the Club's Friday night sessions. The inevitable fallout is that I can do little else, having only left the house a handful of times to do other things since September. Lakeside shopping twice at most, been to lunch with Eric once. The rest of the time I sit 24/7 in my reclining chair. I play a video game in the morning when Eric walks the dogs, read magazines and my current book, do puzzles, watch televison and sleep. Were it not for my wonderful Twitter and FB friends I've made, many of whom I have become very close to, I would have no quality of life at all. They provide a welcome link to the normal life I can't take my place in. The only times I get up, and this would be impossible without Eric's help, are to sit on the commode (which he brings to my chair despite the fact it is only 6 or 7 feet away) or drag myself up the stairs once a week for torture, oops, I mean a bath. Once is all I can manage so it has to do. Apart from that, my life is about as exciting as watching paint dry. I make the most of what I have, and remain stoically positive, but those are the brutal facts of my situation.

I was incredibly 'naughty' last week, being silly enough to shoot on Friday night and then again on Saturday. I shot a new 

distance on the Friday, on a smaller face and I was disgusted with my performance. The trouble is that my standards are still those of the person who played golf off a 6 handicap seven years ago. I make no allowances for the CRPS, the ridiculous position I shoot in or anything else. It was inevitable that I would shoot again on Saturday, to do better. Eric didn't try and stop me, he knows me well enough to acknowledge that I wouldn't be happy until I'd shot again at a more acceptable standard. 

Didn't matter that I had been virtually unable to weight bear and getting from the car to the house when we got home on Friday, had been unbelievably difficult and excruciatingly painful. It's only a few metres, 5 at most. Might as well be a marathon! Thank goodness for Eric, who, as always, wrapped his arms around me, fully taking all my weight and gently guiding me small shuffle by small shuffle towards the house.Whispering that I could do it, come on, one more step. The man is my rock, my world and I love him more than I can express in words. Finally got me sorted out and back in my chair. Brought me a beautiful cup of tea and Oramorph. Did everything he could to make me comfortable.

In the event I shot a PB for a half Portsmouth down the garden, 208. I was happier. The fallout was appalling, I was in agony trying to get in the wheelchair, let alone sitting in it whilst shooting. When I was finally back in my chair I was in a seriously bad way. Couldn't weight bear at all, so it was a case of getting the wheelchair as close to my chair as possible, him pull and me push up out of the wheelchair then cling on to Eric and fall sideways into the chair affair. More Oramorph and sleep followed till Eric woke me many hours later for my dinner. In my defence I was buoyed tremendously by my achievement so I didn't care.. 

It is a pretty good marker that the payback has subsided and my pain, swelling and everything else are getting back to 'nomal' levels when I manage to get the i newspaper. That's the really small one, with short articles etc. Finally managed it today, some 5 days on from Saturday. Bearing in mind that I have not left my chair other than to sit on the commode or go for a bath (this morning), it gives a reflection of just how hard it is for somebody with severe CRPS to try and have a hobby, do something they enjoy. Get pleasure from life. Oh and I still had to take Oramorph (my last line of defence) today because my legs are still awful. At least I can stay awake for several hours at a time now. That is real progress believe me!! Sunday and Monday passed me by, I slept through them. Tuesday was a little better, in that I managed to stay awake a little bit, but still I just festered, feeling terrible, and life passed me by. Wednesday I could finally read a bit, before feeling too unwell to carry on. Throughout my legs were off the scale and I had to resort to Oramorph at least once a day. It is only today that I feel more like myself. Normally it would be archery tomorrow, but the indoor sessions have finished till 11th January. A reprieve? Probably not, because I will probably shoot tomorrow if the weather is better.

Despite the toll it takes, archery (like speedway) are vital to my sanity. I would go stir crazy sitting at home in my chair 24/7 entertaining myself with reading and so on. The reality of life for me is that it really doesn't matter what I do, however trivial. Even if I do nothing the pain is there. There is always payback. Days of it. My base level pain (an 8 is as good as it gets for me despite the arsenal of medication) and lack of mobility make it impossible to access other areas of the house. I can't do anything independently, so life would be intolerable really. Unless we go out or I go in the garden (another military operation like everything else) I am a prisoner every minute of every day in my chair thanks to CRPS. Quality of life? What quality of life? 

I choose to do archery and go to speedway despite what they do to me, because I choose to try and have some quality of life. I reckon if I'm going to do something I may as well do something I really enjoy. If I waited till I felt good enough to do something I would wait forever. In my position, you just have to go for it. And sod the consequences!!

PS...

I don't like being political but I will allow myself on this occasion. There is a particular irony in that a letter from the DWP saying I am to be migrated from Incapacity Benefit (IB) and assessed for Employment and Support Allowance (ESA) came a week ago. In the weeks to come I will have to 'prove' that I am disabled, unable to undertake work. This will be the fourth time of filling in the form but the first for ESA. How do you possibly put across what life is like for me on a tick box form without the room to elaborate fully? I wouldn't mind but I, like every other genuinely disabled person are branded as a scrounger, the scourge of society by this Government. People who choose to live on benefits rather than go and work. I would give anything to be able to work. There are many things I'd like to be able to do!! Little things like being able to get up and fetch the thing I want rather than ask Eric to get it. Get dressed on my own. Be able to leave the house on my own. Do anything on my own!! They may demand that I travel goodness knows how far to undergo a 'work capability assessment'. It is an insulting and degrading process, causing unnecessary stress when life is hard enough in itself. 

No going back....

Finally the letter from my Consultant arrived and my GP would finally prescribe the new meds I needed to start phase 1 of our plan to try and beef up my pain relief. That was nearly a week ago so thought I'd take stock of where I am so I have a reference point further down the line.

It went very smoothly, the two co-dydramol three times a day and two co-codamol at night were replaced with two paracetamol, effectively removing all codeine from the arsenal. My morphine MST has increased from 40mg to 45mg. I had been expecting horrible codeine withdrawal but nothing. Indeed I felt better in myself, some of the 'fog' seemed to have lifted. This was going to be easier than I could have hoped!

Unfortunately it became apparent very quickly that the pain relief wasn't as good. My baseline pain is worse, the stabbing pains more potent, the burning pain hotter. They are more naggy generally, stiffer and it is even harder to move than ever. As I type this I had my first bath in a week a few hours ago. I didn't want to but there is only so long you can put up with that yucky feeling when you haven't washed properly for days. I felt 104 trying to get up the stairs, getting on and off the bath lift was exhausting and even Eric's most gentle drying could have easily have been red hot pokers running up and down the legs. Before I go further it is important to explain that what I describe is based on what I have been like on the old meds. We are going from a very poor base to something even worse.

Everything came to a head yesterday. I felt unbelievably awful, don't think I have ever felt that bad. Death would have been a very happy release and that isn't meant flippantly. I was uncontrollably hot, my legs had fallen off the scale and disappeared into a dark abyss of hell. I was exhausted, felt physically sick, couldn't move at all, head was about to explode. It was utter hell. Was this withdrawal? Was it the resultant state I would be in as a result of changing the meds? Had the morphine not built up but the codeine gone? Of course it was utterly impossible to know just why I felt that bad. I resisted the Oramorph - after all if I didn't know whether the morphine was causing the problems, adding more would just make it worse. So as always I sat it out and thankfully I started to feel a bit better once all the meds were on board. It was scary and I know I panicked when I felt at my worst. There was nothing I could do, we had to continue with the new regime, regardless of what it was doing and may do that may be worse.

Well I am writing this so things must have got better? Yes and no. I feel nowhere near as bad as yesterday so whatever it was it isn't getting worse. Hooray! However as I have already said the pain relief is worse so life is tougher. But hey, life is always tough, so what's a bit more? One thing is for sure, there is no turning back, so in another week phase 2 begins with more changes. Who knows what the outcome will be, what side effects, withdrawal etc I'll suffer. I just hope that in the end the overall effect is an improved handle on the pain with Oramorph there for when I really need it, not just another thing I take each day. 

So, forward we go into the unknown that is a major shift in medications. Fingers crossed it will all be worth it....

To do or not to do......

I must be stark raving mad. Or bonkers. At the very least I seem to have this uncanny ability for choosing to do things that play merry hell with my CRPS, rendering myself completely incapable of doing anything for days after. I am of course talking about speedway and my recent return to archery. 

As I sit here trying to write this blog post (Saturday) I feel absolutely awful. My head is throbbing, my eyes are scratchy and a little blurred. Probably bloodshot if I could see them in a mirror. Legs are red hot, with all the usual stabbing pains, burning sensations and other nonsense. I have spent all but an hour or so of the day crashed out, being completely unable to stay awake. I always play a video game when Eric walks the dogs first thing in the morning. This is something I love doing and provides a welcome distraction to the pain as I gently ease myself into the day. This morning I couldn't stay awake to play it at all. Things didn't improve...

Coming back to this again tonight (8pm) having slept the rest of the afternoon and early evening. So today has been a total washout. Done nothing to write home about. Managed about 5 pages of my newspaper after four attempts. Gets really annoying when you wake up to find you've fallen asleep, so start reading the bit you were reading again. Only to then wake up again having got no further. Frustration personified! Eric will ask me if I'd like a cup of tea. By the time he's made it I've blacked out again. 

Every time I do any archery it takes a good 2-3 days of complete inactivity for me to get vaguely back to normal pain levels plus be able to stay awake long enough to do anything like read etc. Once I get past the 'can't stay awake, legs completely off the scale' bit I then enter the phase where I feel a bit better, but not enough to actually do anything. Boredom sets in badly as I don't feel able to do anything interesting, just read a bit, do puzzles, catch up with friends on social media. Inevitably, frustration results in me doing something stupid like archery in the garden, or go out to Lakeside, like I did last week. And the week before. I'm then back to square one plus added further punishment for my 'petulance'.

It is now 6pm on Monday and I am finally beginning to feel more human again. Oh and up to finishing this post. Yesterday followed much the same pattern as Saturday, although I did manage to read some of my book and look at a couple of magazines. Stupidity raised it's head today but was foiled by a bra of all things. Sounds crazy? Well if I say I was going to do some archery in the garden it may shed some light on the reason. Hubby had put my archery bra in the wash, so that was that. Just as well really although it pains me to say it!! No pun intended...

Reading through the above just reiterates how dull my existence is. Quality of life? What quality of life you may be thinking? In all honesty it is utter rubbish by normal standards. Apart from getting up to use the commode or struggle up the stairs to have a bath (helped by Eric of course) I am a prisoner in my reclining chair. Life is a never ending cycle of trying to recover from doing anything or preparing myself to do something. I get payback from CRPS regardless of how trivial the activity I do. Having a bath leaves me struggling with the flare up. Doing 15 minutes of 'exercise' on the Wii, essentially just waving my arms around whilst sitting in my chair, leaves me suffering payback the next day. Sometimes I do nothing and still get punished. Go figure...

Gone are the days of sponteneity, nipping out to the shops or running some other errand. Even the most simple of activities becomes a military operation, always involving extra work for Eric in getting me ready, taking me somewhere, or bringing me what I need to do something in my chair. Everything I do is weighed up against the payback it will produce. Those trivial things simply aren't worth it, so I stay at home whilst Eric goes on his own. I have only been in the library once and that was only because I'd had a dental appointment so was in my wheelchair. I reserve books online and Eric collects them. He gets all my prescriptions, walks the dogs on his own and does the food shopping. As much as possible everything is done online because I can do that. It would be wonderful to be able to pop out,  I'd love to be able to work, or lead anything like a normal life but it's completely impossible. I'm dependent on Eric for everything. The pain and other symptoms of CRPS are ever present 24/7, it's just a question of how bad they are. Even were I to remain absolutely still, do nothing at all the symptoms would still be there.

So, returning to my opening words... Am I stark raving mad for doing things that come with such a heavy price? Or is it better to really go for it and do something I love, so that the payback is easier to bear because I had a really good time? 

What do you think?

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!!

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..

I will get a quicker appointment!

Phase two of 'operation get a quicker appointment' lurched into action last night, thanks in part to a suggestion from my wonderfully supportive Twitter family, that I get in touch with PALS at the hospital and see if they could help. It is so humbling that so many of you care about me, are always in my corner, ready to support me. Thanks to all of you, you know who you are!! I just hope I do the same back, I certainly try!

Now you know me, fighting is something I'm good at, so I fired off an email to PALS with 20 odd minutes to spare before they closed. I explained the situation and pasted in the letter I wrote to my GP. I asked them to read that and then contact me to discuss it. I'd never have got the point across on the phone!

Two superb things happened this morning. Unbeknownst to me Eric went into the GP's surgery on the way back from walking the dogs to see if he could find anything out. Apparently my GP had already written a letter yesterday afternoon and it had gone off in the post last night. We were flabbergasted, so quick! Unheard of for him, obviously he must actually have read it and felt compelled to act. Yes!!

Then I check my email and waiting is a secure message from the hospital. PALS had come through already, were really sorry to hear about the problem I was having. They had been in contact with the Pain team and I could expect to hear from them (the Pain team) today to arrange an earlier appointment. I was ecstatic, perhaps this was actually going to work out and I wouldn't have to wait that horrendously long time. Maybe Eric wasn't going to have to run up a huge phone bill to pester them, phoning up week on week to see if someone had cancelled. Yes!!

Unfortunately that's as good as it got. The Pain team haven't phoned me to arrange an appointment. I am not really any further forward than I was this time yesterday, which is.... well, let's just say it's 'frustrating'. I desperately fought to stay awake all afternoon waiting for the phone to ring, but to no avail. Let down again by those who are supposed to care and help again.

I have to hang onto the positives. The Consultant will get a hopefully forceful letter from my GP which should rouse a response. I am also hoping that the Pain Clinic have made an earlier appointment and sent it in the post, so fingers crossed it will arrive tomorrow. If nothing arrives in the post I will get back in touch with PALS, who in turn will hassle the Pain Team again. I know Eric will chase My GP to follow up and ensure there is a response from the Consultant. 

All is not lost, indeed I think the cards are stacked in our favour. Hopefully we won't need a phase three. We shall see....