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....

Thanks for nothing Doc!

I wrote the following letter to my GP over the last few days in light of the fact that I was unable to see my Pain Consultant last week as he wasn't seeing patients. I have been struggling worse than ever for the last few months so was devastated when I couldn't see him. A new appointment came in the post for November 1st. This feels a lifetime away. Eric got in touch with the pain clinic in an attempt bring the appointment forward. He was unsuccessful, so I decided to explain the situation in a letter to my GP hoping that he would change my medication to try and give better relief until I see the Consultant in November. Here it is, with some of the detail removed to keep it shorter.

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Dear Dr ******

Unfortunately I was unable to see Dr ******* last Thursday (21/6/12) through no fault of my own, as he was unavailable due to personal reasons. His appointments were being covered by a Senior Nurse, which was of little use to me, so we had to postpone. I have had telephone appointments with the Senior Nurses before and they are unable to advise or discuss my case because of all the different medications and the severity of my CRPS. Instead they just advise that I need to see Dr *******.

I had a letter through the post yesterday, and the replacement appointment isn't until 1st November. I was particularly keen to see him as I have been struggling particularly badly with the pain in recent months. As you know I recently upped my Morphine from 40mg to 50mg but saw no reduction in pain. I would classify 'normal' pain levels to be an 8 on a scale of 1-10.  Doing anything elevates this to completely off the scale.

I simply can't carry on as I am for another 4 months or more. We must try and tweak or add to the medication I take as I am finding it particularly hard to cope with. Doing the smallest thing results in a major flare in my legs and it takes ever longer to recover. My quality of life is even worse which is saying something. I desperately need your help to try and improve this with the hope that I can recover a little quicker or not suffer as badly. I can't walk in the normal sense anymore. All I can do is slowly shuffle, my feet in constant contact with the ground, a few inches at a time, either pulling myself along using grab rails or more usually shuffling along with Eric, our arms around each other. I need to be supported constantly and with each movement the pain worsens. I would be completely unable to cover a fraction of the distance from the front door of your surgery to the door of your room. Unsupported I couldn't move more than a couple of steps without the pain being totally unbearable. Added to this is the fact that my balance is appalling, were it not for Eric helping me get up, move etc I would fall on a regular basis. Kneeling and bending down are impossible.

What follows I hope gives a feel of what life is like, and how CRPS affects me every day. I never have a good day, it is more a case of how bad the day is. Also, why I am so desperate for any extra relief you can give me? Why the thought of waiting till November to see Dr ****** is so terrifying.

[Snipped: example of how going out to Lakeside Shooping Centre affects me] 

The only activities I do now are

1. Going to Lakeside as discussed above
2. Doing some gardening for a short period (one to one and a half hours). Again I am in my wheelchair with legs elevated. We have raised vegetable beds which I can access. Everythign is done by my upper body, leaning across sideways to do anything. The payback from this is worse than going to lakeside.
3. Doing exercise using the Wii games console. I can do this sitting in my chair with legs up. Obviously I have to do things that don't need you to move about or stand up, but give an aerobic workout. I have found that 15 minutes is the most I can do without having a major flare up. Realistically if I manage to do this three times a week I'm doing well.
4. Having a bath. I include this because it impacts on the pain and other symptoms and is something else that I have to recover from. The temperature and movement of the water exacerbates the pain. Being dried is torture. At present I manage one bath a week. 
5. Archery - done in the back garden. Done irregularly. Have to have legs down which limits the amount of time I can do this significantly.
6. Going to watch speedway at Arena Essex. Utter madness this, I really shouldn't even attempt this any more but it has become something of a 'line in the sand' that CRPS will not take from me. It has taken so much else. By some considerable distance this is the worst activity I can do and can take me nigh on a week to recover from it fully.
7. Reading, Sudoku, using iPad, playing video games, watching TV make up the rest of what I do. Essentially anything that can be done sitting in my chair.

Apart from typically one trip out each week my entire life is spent confined to my reclining chair with a duvet over my legs. I cannot get myself up, and now use a commode permanently to urinate. Eric pulls this over to my chair, helps me up, gets me onto it and then back again. 

[Snipped: getting up the stairs to have a bath] 

I am unable to do anything for myself, being unable to stand unsupported for more than a minute or so. Doing anything whilst standing is impossible, so if I need anything I have to ask Eric to get it for me. 

Life is a battle. Getting through each day is a success, doing anything a challenge and done knowing the consequences. Everything will be worse no matter how small the activity.

Both lower legs from and including the knee downwards remain affected by CRPS. The main areas that really concern me are:

• Swelling of feet and ankles - remains horrendous but my right foot has caused particular concern recently. Extremely purple and swollen, to the point where I feel as if the skin is likely to burst. The pressure is awful and the ankle locks completely. Blood flow when you press the toe is slow in returning. The foot may be either boiling hot or freezing cold. The hypersensitivity makes it extremely difficult to counter this.

• Burning pains/on fire - this ia a constant issue even when the feet are like blocks of ice. The front of both legs constantly 'ripple' with waves of pain varying in intensity from extremely hot with severe pins and needles to a feeling that they are actually on fire. Anything touching the legs, such a part of the duvet exacerbates this making it impossible to get the legs comfortable. If my legs are down this problem intensifies rapidly. The legs become increasingly mottled and a deeper purple colour. 

• Ankle and feet - Both feet along with the swelling are ridiculously hypersensitive to temperature, even the slightest air flow. Even the slightest touch causes me me to cry out in agony. All of the toes are turned over and my right foot in particular is turned inwards because of the swelling around the ankle. I live with constant stabbing pains through the top and sides of each foot and ankle. The nails are extremely brittle and grow extremely slowly. The slightest movement of the foot increases the pain so I do my best to keep them in as comfortable a position as possible. There is still good movement in the ankle, if pushed by someone else the feet move well, I just can't do anything with them myself because of the pain. When my legs are down, the feet become increasingly purple, with similar pain to the front of my legs. The stabbing pains get worse.

• Knees - both extremely swollen, the left being worse as that is the one that is bent when going up and down stairs. I get stabbing pains on the inside of the knee on both sides. The duvet touches these constantly which is extremely uncomfortable. I can't put any weight through either knee, getting up from a chair for example involve me pushing on the arms of the chair whilst Eric pulls me up. I cannot get up unaided. I also need help using the bath lift, with Eric having to lift each leg onto a stool first and then into the water. I support myself constantly with grab rails.

• Exhaustion - this is an ongoing problem. I am completely unable to stay awake for large periods, sometimes losing an entire day to 'on and off' sleep if I have been out or done something. Each period of sleep doesn't last long as the pain breaks through, and I generally feel worse on waking than I did before. Severe headaches, extremely painful eyes (feel as if something is stuck through them, together with severe pain at the back of the eye) are a constant issue.

Anything you could suggest to help combat the above would be very welcome, or perhaps upping the dose of existing medications to see if that helps? I had a couple of specific queries I  was going to make when I saw Dr *********, but I wonder if you could act on these. At present I have nothing that I can take which would give an instant pain killing effect. I need this desperately, especially for when I get home. I would only anticipate using this as a last resort.

[Snipped: suggested medications which may help me and improve the pain relief] 

Many thanks for taking the time to read this Dr *****, I felt it important to give you a better overview of how I am in writing than Eric can when he comes to see you. I would be so grateful if you would prescribe the above and/or tweak the doses of the other drugs I take. Any relief would be more than welcome. I simply can't carry on as I am until November. Current medication list follows. I take everything all the time. Indeed if I miss any the consequences are grave.

Yours sincerely,

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Eric went to see my GP this morning and came home thoroughly unimpressed. The GP at best only skim read my letter, didn't make any suggestions and didn't even mention my medication. He just said he would o to the Consultant sending a copy of my letter with it and asking for an earlier appointment. Bearing in mind that he wrote to the Consultant well over a month ago about medication and got no answer, we aren't holding our breath.

So where does that leave me, and how do I feel about it all? 

I am faced with a long wait until November, managing as best I can in the meantime. I feel extremely let down by my GP who yet aagain shows that he doesn't care at all. I can't believe he didn't suggest any changes to my medication or even mention them at all! Caring profession? I think not!!

The inability to be able

By nature I like things to be neat and tidy. I'm by no means fanatical about it, but if I see a pile of papers, or  a load of clutter I want to sort it out. Throw any unnecessary stuff away or put it out to be recycled. I can't stand not being able to get to something or being unable to use something because there is a load of 'stuff' cluttering it up. 

Unfortunately for me, Eric is the complete opposite. He is a hoarder by nature, hates housework and is more than happy to have piles of stuff here, there and everywhere. He tends to just leave stuff lying around, items we've bought stay in their carrier bags rather than being put away. The kitchen was always one of the worst areas, as he never seems to put anything away after using it. Periodically I would completely blitz an area, throwing stuff out, cleaning and generally de-cluttering it. In between I would do my best to keep things tidy but it always seemed to be a losing battle. 

Now, pre CRPS this wasn't a huge problem because I could do something about it. Now I can do nothing except watch the clutter build up and the place become more and more untidy. I have forced myself to ignore it as the years have gone on, only too aware of what Eric has on his plate just caring for me. Me complaining about the state of the place isn't going to help him when he feels overwhelmed with everything he needs to do anyway. There is no way I can help him much as I'd love to. Let me take the kitchen as an example. The distance to the kitchen from my chair isn't far but it may as well be miles away when walking is so difficult and painful. I simply can't get that far, even if Eric wraps his arms round me and we shuffle along together. I have a walking frame but no matter how hard I push down with my arms it doesn't give enough support. How then can I tidy, dust or put things away when my arms are constantly used to hold me up? Especially as the pain increases exponentially the longer I'm standing? The house is too small to use my wheelchair to get around, it only just squeezes through the door between the living room and the kitchen. I can't reach the work surfaces and having to have my legs up makes it even more  difficult.

This blog post was prompted today because I let my frustrations overcome me. I wanted to go in the garden, something that sounds a quick and easy task but in reality takes ages. Eric has to move stuff around in the kitchen before he can open both patio doors. The wheelchair itself always has stuff piled on it, which has to be moved somewhere else, usually onto another pile. Other bits and bobs get shuffled around. Once uncovered he then has to find and put the leg rests on, get my fleecy thing, manoeuvre the wheelchair into the living room. In the meantime I am sitting in my chair waiting, feeling more and more frustrated that it is taking so long. These feelings are only compounded by the fact that the path in the garden is cluttered with various tubs, buckets and piles of weeds making it harder to move around or get near the railway sleepers that form the edge of our raised beds. I inevitably sit outside waiting whilst Eric gets things organised out there for me as well. Toys out of playpen moment... said I wouldn't go outside because of the hassle.

My frustration isn't aimed at Eric, it is entirely to do with my inability to just get up and do things as I once did. Everything seems to take forever, when of course, the reality is, that it is only a few minutes. It is totally unfair on him, because he does everything he possibly can to make life as good as it can be for me. No, my frustration is squarely aimed at myself because I simply cannot bear being so useless, unable to do anything to help. I hate the fact that he has to waste his time moving things and getting me organised to go in the garden. I would much rather he spent the time doing something he enjoys. He still hasn't seriously tried the camera I bought him for his birthday, which was at the end of April. Much as I hate it the nature of the beast is that everything I do has to be brought to me or done from afar, such as using the computer. That isn't very helpful when tidying etc involves you moving things, putting them away and so on. 

It is made all the worse because Eric is so wonderful, never complains and ignores my frustrations. As he is the only person I see and speak to for days, a week, if not longer sometimes, he bears the brunt of any frustrations I may be feeling. I try desperately hard not to lash out, but sometimes you just can't help yourself. 

Postscript..

Did go in the garden after all. Eric insisted as he always does when I've been stupid about something. Thank you Eric xx

What would I do without him?

Get the balance right...

The title of a Depeche Mode song and very appropriate for the CRPS sufferer. Previously I've talked about the idea of spoons representing the amount of energy we have. Everything we do uses up some spoons and if we try to do something 'big' (not by normal standards) then we completely run out of spoons and grind to a halt. Here I tackle something I am bad at, seriously bad. Pacing..

It seems pretty obvious that my focus should be on doing anything and everything to minimise the pain, swelling, exhaustion and everything else that goes with having CRPS. This is where pacing comes in. Commonsense says that you should always try and do something for a time or at an intensity that doesn't produce too large a backlash in terms of punishment. Easy you'd think?

Well for someone like me, who never did anything by halves before I got CRPS, it is all but impossible. I was never happy unless I'd flogged myself to death in the gym, swum more lengths in the pool than the last time, bettered my lowest score on the golf course, won every match I played in whichever sport I was competing. You get the idea. I have long accepted that all of these things are now impossible, but it hit me this week that I still haven't and am probably incapable of ever accepting the severe limitations the condition forces onto me on a daily basis. Let me try and explain..

It is now six and a half years since I got CRPS and I can honestly say I still have no idea where the safety limits are, just how much or how long I can do things for before I get payback. This is in large part because I can now do so little of anything, however trivial, before my condition flares. It is however more to do with the fact that if I actually did a 'safe' amount it really wouldn't be worth bothering at all. If I say that just getting dressed and out to the car leaves me feel horrendous, and that is before we go anywhere, you get the idea what I mean. Similarly having a bath. Getting upstairs, having the bath, being dried, getting back downstairs leaves me struggling badly with increased pain and swelling. Have a bath every day? Not a hope. 

The bizarre thing is that it isn't just physical activity that makes me worse. I did absolutely nothing a couple of days ago except play a video game for a couple of hours, read a magazine, tweeted a bit. On waking from my afternoon nap I felt absolutely terrible, pain worse, feeling lousy in myself. My right foot also swelled alarmingly and was a severe purple colour.  How could what I did make me so bad? It is truly ridiculous, you couldn't make it up! This sums up my life. Imagine if your life involved you doing so little each and every day, yet still you felt worse and were punished constantly. This is how I am forced to live every single day. 

It perhaps seems more understandable why I kill mysef going to speedway. Since the season started it has been an uphill battle to recover from the effects of one meeting before the next one. The punishment has been brutal, long lasting and rendered me incapable of doing anything except sit and wait it out. Now that's fine because although it is something so extreme and madness to even attempt it, I do so because I love it and it is as I have said before 'my line in the sand', something I will continue to do despite what CRPS throws at me. 

I have tried to pace myself loads of times but in all honesty it doesn't work for me. I love doing 'exercise' on my Nintendo Wii. Now in the past I would have played for an hour or more and then spent the next couple of days paying for it. Instead I recently decided to try again to find a sensible amount that I could do without it having an adverse effect. Turns out that I can only manage 15 minutes at the most. Hardly seems worth the effort. Similarly I tried to limit the time I spent in the garden but again this meant I got very little done. I combined this limited time doing something with lots of rest in the hope of finding a more bearable pain level etc. Very quickly I found myself feeling bored, fed up and more worryingly down. It was affecting my outlook on life, bringing me down. You'd have thought I would feel better in myself, not worse?

Turns out I simply can't cope with being sensible and pacing myself properly. I don't mind suffering increased pain, swelling and everything else, no matter how bad, if I feel that what I did was worth it. Doing so little yet still feeling grim isn't for me. The way forward, and it isn't for everyone, is to do more of something than I should, regardless of what I do. At the end of the day I have to look after the mental as well as physical side of me. If that means I have to suffer more then so be it. 

Pacing? What pacing....