Whole lot of shaking going on...

Two hours sleep - it's just not long enough with RSD. Lack of sleep makes the pain levels soar into the stratosphere. But, that's what I got last night because hubby was delirious and struggling for breath. The pneumonia had worsened...... :(

I managed to get to sleep at about 5.00 am and was woken at 7.00 am by hubby falling out of bed. I screamed because of the sudden noise before I comprehended what it was, then got him back into bed. We both catnapped for a while and I felt a bit better for that.

But as the day wore on I made an Executive Decision - like it or not, he was going to see his GP as an emergency appointment. How to get him there at very short notice? I had to drive.

I hadn't sat behind the wheel of a car for SEVEN YEARS. But, to my amazement, I did it - I got him to the surgery, about six miles away. The trouble is, the pain it caused in my legs was horrific. They were both shaking and I could barely walk even with my two sticks. I was trying so hard to stay strong and focussed that I didn't know that hubby had almost collapsed behind me but as soon as I was aware of it I calmed him down, got him to lean against the wall for support and put myself in front of him to stop him falling forward. The nurse fetched a wheelchair.

He had to get to the hospital, no question about it. The hospital is 20 miles away, in the other direction. There was so way I could make that journey, not even as a passenger. I was finished.

A wonderfully kind volunteer driver said he would take hubby to hospital. He and the GP took one look at me and realised I wasn't going to be able to drive myself back home. So, he brought me back in his car, meaning that my car is still six miles away - but I'll worry about that tomorrow. At least it gave me the chance to pack a bag with pyjamas, toothbrush, razor, book etc. so that the OH would be a little more comfortable. I also packed a special cute cuddly elephant which I know will make him smile when he discovers it because it will make him feel that I'm closer.

I feel so upset that I wasn't able to go to the hospital with him, even though it so clearly wasn't possible. It was far better for me to try and recuperate ready for whatever tomorrow will bring (Tesco, for a start).

I'm hurting so much tonight with worry, exhaustion and pain. I miss him, I'm frightened and I feel very alone and helpless. I hate this RSD & Fibromyalgia more than ever before - it's keeping me from being with my beloved when he needs me most, and I find that so hard to cope with. I should have been there to hold his hand, talk to the doctors, all of that stuff. And instead, I was at home with both legs shaking so much I couldn't walk, sobbing with pain and feeling like I'd let him down big time.

I once read a T-shirt slogan that said: "I try to take life one day at a time.... but sometimes several days hit me all at once." Yeah, that pretty much sums it up.

But, after all, tomorrow is another day. (Haven't I heard that somewhere before?!! :P)

I'm praying - that's all I can do. Please God, take care of him.....

It never rains but it....

.....chucks it down in stair-rods. My other half is seriously ill with pneumonia. What was thought to be a chest infection is actually rather more than that. The gi-normous antibiotics he has to take are completely knocking the stuffing out of him, which in a way is a good thing, because it means he has to sit still and rest. He's not normally a patient patient....... but he does understand the importance of doing as he's told this time because if I'm to be able to look after him he has to co-operate and allow himself to be looked after. So far, I must admit, he's being very, very good, which is a surprise to both of us!!!

So, today there was the excitement of doing the grocery shopping online. That's normally his domain and so it was a major event for me! I think I've got everything we need for the coming week. Living in a little village has its drawbacks, especially if you can't even get to the village shop.... but I'm pretty confident. I can't do much in the kitchen so it had to be easy meal choices, but they'll be tasty dishes to set before the king. Thanks, Tesco.com.

But BOY did I overdo it today. When you first get diagnosed with RSD, or any chronic pain condition for that matter, you are told to "pace yourself". Now, that's absolutely marvellous in theory but unfortunately real life has to bloody well intervene and spoil it!!!! ;) I always remember a caption I saw on a T-shirt once: " I try to take life one day at a time....but sometimes several days hit me all at once". Yeah, that's it exactly. So, I stood in the kitchen for too long and first my lower right leg started shaking uncontrollably, then both ankles started to throb and swell. I had to go and rest, there wasn't any other option - but I could have done with a bit more rest than I had.

Never mind! We've got through the day more or less unscathed, and for that I am deeply thankful. Not looking forward to taking my boots and socks off though......

It's at times like this when the limits that RSD inflicts on your everyday life really start to become pronounced. But I'm amazed at what I've achieved today, even if I'll pay the price for it tomorrow.

That's not a happy notion to close this on, so here's something much lovelier. No, make that two things.

First of all, I was due to go and see Derek Acorah last Saturday. I'd been looking forward to it for weeks. But of course, with hubby's illness we couldn't go. To say I was disaappointed would be one of the biggest understatements of all time.

'How is that lovelier?' you may ask. Well, my lovely friend Sinead (hi hunni if you're reading this!! ;) x) went to see Derek the night before, and she knew that my chance to see him was in jeopardy. So - bless her - she very thoughtfully asked him to sign a poster for me in case I couldn't make it. And the poster arrived this morning!!!!! It's given me such a lift, I'll treasure it forever. That is, most definitely, as the great man himself would say, lovely :) xx

The second thing happened just before I started writing this. Harper was outdoors and I couldn't work out was going on. Two shining orbs kept appearing and disappearing - not the paranormal kind, you understand, but the cat's eyes in the dark kind. But he wouldn't come towards me, it was as if he'd been rooted to the spot. Aha! I guessed what I'd find.....I went out into the garden to see him and got the "yeah, it's great to see you and all that but you're really cramping my style" greeting. He was sitting by our fake tree stump birdbath with his back to the house, so his head must have been turning like an owl's earlier on!! At the base of the tree stump were little scratchmarks on the earth, suggesting that a tiny rodent may have found its home underneath.

Oh, he'll be there for hours. The mouse might die of boredom but it won't die because of anything Harper actually DOES. I've seen him in that situation with the mouse actually running out AND CLIMBING ALL OVER HIM!!!! :D And he's let out a pitiful little mew that translates as "Help! There's a mouse climbing all over me!!"

So, I don't know what time I'll be going to bed. I want to let my other half get a good bit of shut-eye in before I risk disturbing him. It's 2.15 am and I still haven't taken my sleeping pill..... hardly seems worth it really, does it?!!! :)

That's another fine mess I've got me into.....

Well, the new anti-spasmodic is now up to 3 doses a day, following phone call with GP on Friday. And he's also put me on a short dose of steroids to see if that'll kick-start anything positive. Then he writes to the Pain Management Clinic.

My weekend was utterly trashed, although not entirely by the RSD for once, and it feels as though the depression is never going to lift. This has been the toughest month ever, for so many reasons.

This week I have been mostly reading...... :) ...... well, I've been reading up on Fibromyalgia, which my former GP told me I also had a couple of years ago. The treatment is much the same anyway and so it wouldn't make a whole heap of difference from that point of view - i.e., there is no effective treatment, so try these because they might help - and you can't take double the dosage just because you've got both conditions, ha ha ha, LOL etc. But it might explain why I've got such a bad case of RSD. The list of symptoms was like reading about my life, and comments from fellow sufferers had me saying "Me too!" over and over again.

More FMS than RSD, or more RSD than FMS? Neither, actually, because IMHO they feed off each other and so it's basically 50/50.

But I feel such embarrassment about telling anyone that there's another underlying condition that's equally weird. My true nature is one of finding humour in everything and laughter being not only the best medicine but a way of life, and I fear it makes me sound like a real misery to have so much flipping wrong with me all the bloody time. And that's so NOT the real me. And that's hard.

But you have to admit:
Reflex Sympathetic Dystrophy? Weird.
Fibromyalgia? Weird.
Raynaud's Syndrome? Weird.

It's all a bit - well, weird, don't you think? Add asthma, high blood pressure (but controlled by drugs) and a few other things I shan't go into and I'm like a walking medical disaster area!!!

I'm in extreme pain tonight; it's so excruciating that it's 3.00 am and I still haven't gone to bed because I'm scared of taking my trousers and boots and socks off because I know how much extra that will hurt. Isn't it ridiculous? But that's what living with RSD is like - so many aspects of the condition itself are ridiculous before you start.

And all of this from a sprained ankle. Yep, that's ridiculous all right.

When One Door Closes, Another One Slams In Your Face

I made it. I got the last of the wretched Topiramate out of my system. It was tough. Very tough. But it was gone and the new experiment could begin: adding the anti-spasmodic just 2mg at a time, very slowly, until we gradually reached a maximum of 8mg a day. Well, tomorrow is my first day on 4 mg. Meanwhile, we started to up the Gabapentin dosage to 3600mg a day (!!!!!).

Well, that's been flipping marvellous. I've reached the dizzy heights of 3300mg and was gripped by the worst cramps of my entire life. It started early Sunday morning in my right calf and it's now early on Tuesday and it han't gone yet - the left calf has joined in though, in an unwelcome gesture of solidarity. My GP has told me to cut back to 3000mg and see if that helps - I'm to report back at the end of the week, sooner if the cramps don't improve. I couldn't wish for a more understanding doctor, he is taking such an interest and he genuinely cares and wants to help. He's then going to write to the Pain Consultant and basically say "OK then - now what?!"

It hasn't been an easy few weeks. I can only sleep almost sitting up and even then it's now drug-assisted, I'm afraid. Yes, I'm on sleeping tablets. I was just so exhausted from lack of sleep and the GP said I really did need something to tide me over and give me the chance to get some proper rest. And he was right, of course - I didn't realise how poorly I'd been sleeping until I'd had a really refreshing night's sleep!! Those little blue pills have been a Godsend.


There is something, though, which has given me an enormous amount of help with some pain relief and has lifted my spirits. I want to tell the world about this because it's amazing.

You may well have heard of reiki healing - my physio had discussed it with me once but because it involved either being touched by the healer or their hands close to the body it wasn't going to be suitable - as soon as the hands got anywhere near I would go into spasm, which would be counter-productive. I

Well, I have just discovered a wonderful lady named Shaz who, amongst her many gifts, is a reiki master, and she has invented the most delightful way to send distant healing. She takes an adorable little teddy bear and gives him a full reiki treatment. The reiki2u bear can then be sent to whoever needs him - including yourself, as I was anxious to check.

Do you think that sounds fanciful? Yes, you probably do. But I can honestly tell you that - IT WORKS!!!!!!! I was in a desperate state when my bear arrived. I didn't know what to expect. But as I unwrapped the little fellow and held him close I was rocked back in my seat with what I can only describe as pure energy, and it was like being enfolded in a pure white light. And then - bliss!! My pain was eased. And I cried with the sheer joy and relief of it. I felt able to cope.

I know I'm in a bad way at the moment but that's largely the side-effects of the drugs - and even then reiki2u bear is still helping. My hips have been so much better today, as have my hands.

There will be some people who won't believe that what I have just written is possible. Fine, that's their choice. But believe me, it's more than possible. It happened to me, it's continuing to happen to me and having a tangible makes the distant healing seem so close.

reiki2u bear - http://www.freewebs.com/reiki2u/ if you're interested. Shaz is a lovely, kind and caring lady and one of those people who make the world seem a better place.

Down, down, deeper and down....

Well, I'm down to 50mg of the Topiramate per day now and things are getting pretty nasty. I've been managing the situation not too badly. I decided to give magnetic therapy a try again. I used this a great deal in the early years and it was extremely effective but as the RSD spread the magnets became less effective until they weren't doing any good at all, although they still worked brilliantly for other conditions. I wondered if they might be useful again having had a fairly long break from them.

Instant results! They've really helped to calm the situation down to such an extent that I've been able to cope, to get some much-needed sleep and to feel just that little bit in control. I've worn them 24/7 and yes, I do notice a difference when I take them off. But things are starting to get worse again now and despite the magnets the pain is driving me insane at the moment. If you can imagine every type of pain that you can, that's what's going on in both legs and hands, plus intense burning, the sensation of wasp stings, electric shocks, running water, all sorts of bizarre things. But this is perfectly normal. So that's all right then.

I had a wonderful boost last week when we went out not to see a doctor or a consultant but to see our best friends Kathy & Vince. Kathy & I have known each other since we were 12, which is, er, quite a few years now (!!) and it was so lovely to spend some time out of the house with people I know I can truly relax and be myself with. It did me the world of good - laughter really is the best medicine, and we always have plenty of that!!

Harper has done something extraordinary again today. It's usual for him, but I've never written it up before. I noticed we had some windfalls from the apple tree so, armed with a plastic bag, I gingerly ventured up the garden to rescue them from the local wildlife. Now, Harper seems to think that I should not be allowed out on my own because it's not safe (he's got a point) and he feels it is his responsibility to guard me at all times lest I do something stupid. So he escorts me, keeping only a short distance away and watching me like a hawk. Just in case.

The thing is this. Once I'd finished collecting the apples I slowly started to make my way back. Harper raced on ahead, content that I had managed to survive this perilous adventure. He reached the patio and turned round, then sat down to wait for me to reach him. Halfway down the garden things went funny. I almost blacked out. I struggled to maintain my balance and the world suddenly went very weird and out of focus and then black and white. I don't know how long this lasted. Fortunately I didn't fall or faint and as I gradually came back to reality and my eyes began to focus, I could see a small black and white face perring at me, the head cocked to one side. A more anxious and worried expression I have never seen. I just melted. I assured Harper that I was fine and that "it's all right" and he was happy again, but he still waited for me to reach him and came right up close to make absolutely sure.

You can see why he feels I can't be trusted to be out on my own, can't you? Bless him. He is the most extraordinary, amazingly intelligent cat. But he's more than a cat. He's - he's Harper. And we love him so much it hurts.

I Can't Stand Up For Falling Down...

Elvis Costello, in case it's on the tip of your tongue!

My prolonged absence has been entirely down to the fact that I just can't get my head round the pain at the moment. My legs are extremely wobbly and not to be trusted under any circumstances, my arms are constantly shaking and I'm an emotional wreck, clingy and needy and bursting into tears at the slightest thing. For the past 48 hours I've been in pieces because I've lost a favourite skull keyring, for goodness sake. This isn't like me at all, but the magnitude of the pain and this infernal shaking seems to have tripped something in my mind. Fortunately my darling husband is wonderfully understanding. He gives constant reassurance with his calm and loving voice, gentle hugs and tender kisses. He has an almost psychic connection to me and what is happening within my mind while the withdrawal symptoms do their worst. I'm down to 125mg instead of the 200mg of the Topiramate now and the pain is COLOSSAL. Last night I, and therefore we, had the best night's sleep since the reduction plan began. Every other night I have slept hardly at all, and then only fitfully. I have never experienced pain like this apart from when I was coming off the Lamotrigine in order to give the Topiramate a try - and even so I think this might be worse. What things will be like as I get even lower doses fills me with dread.

Here goes.....

What Now?

Actually, the appointment went very well. The consultant was very attentive, more so than ever before, and very nice. He could see that I was in a great deal of pain; he knew that normally I put a brave face on things but that today I was different.

We agreed that the latest drugs experiment was not a success. And so I have to gently wean myself off this one, just as gently as I weaned myself on to it, and I will then be back at the "curled up in ball screaming" stage. "So what then?" I asked, not unreasonably I thought. The word 'evasive' springs to mind. "Let's detox for a bit". Eh? I'll still be taking 13 other drugs for goodness sake! I could increase the dosage of one of my existing drugs ( to a level which is, interestingly enough, off licence!!) or maybe "eventually" (WHAT?!!) add a new drug into the mix which will specifically target muscle cramps and spasms. Really? And this new wonder drug is usually only given to people suffering from MS......

No. Not that wonder drug. Obviously. Believe it or not, there already is something on the market that can help with the wretched spasms and cramps. Why haven't I been offered it before? Good question. I had to demonstrate that I knew what a spasm was (per-LEASE!) and once I had crossed that hurdle I was deemed worthy.

Sativex. Well, I asked. I shared the info I'd gleaned. I even asked about the possibility of a private prescription, the cheeky mare that I was! (I knew he did a spot of BUPA on the side). He explained that the local PCT wouldn't fund it. Not for any condition. He managed to squeeze one month's worth out of them and that was it, and unless he could guarantee a steady supply he wouldn't prescribe it. Fair enough. He wasn't even able to prescribe it privately either. But he said something very interesting to me as I left.

" I don't want you to give up hope on this."

Don't you worry, I won't, I thought. Not while there's breath in my body, I won't.
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Later on, my GP was also rather perplexed by the blood pressure pills situation. He's come up with an alternative but it's not a straightforward swap because there isn't one, so we've got to see how I get on with it. As for the above, he said "Well he must have given you some idea of what he wants you to take instead, he can't just leave you like that!!" I explained the rather vague nature of how it was left so he said "Right, I'll give you a shout when I get the formal letter from the hospital and then we'll meet up and devise a treatment strategy from there, OK?" Then he smiled very reassuringly and added "Don't worry, I'm sure we can sort something out."

Right at this moment I'm not so sure myself, but I was very grateful for that.

Tomorrow, Tomorrow.....

Tomorrow I'm off for my six-monthly visit to the Pain Consultant. He likes to be rid of me as soona s possible once he's decided on which drugs experiment he's going to inflict upon me because either the last one didn't work or the some of the drugs have stopped working but I'm hoping tomorrow will be a bit different. I want to be able to scrabble together what crumbs of my mind I can spare (I can't afford to spare a whole piece!) and give them to him. We have lost about six months of this year on the last drugs exchange, which hasn't worked and I'm now worse off than I was, although believe it or not I'm now mentally much sharper than I was under the old regime. What I need is a drug that flaming well works.

And to that end I have some updated information re Sativex. I've been in touch with the manufacturers. It turns out that my doctor could get in touch with them too. No need to to go through the Home Office now, that was overturned. The doctor would need to contact them directly, specify my condition and then they could advise him on how much Sativex he should prescribe me and it could then be arranged on a "named patient basis". Speaking in general terms, this puts a massive onus of responsibility on the GP - basically, he has to take personal responsibility for the patient using, and therefore potentially misusing, a controlled drug. Not only that, how in the name of sanity would the drug company know how bad the patient's pain is and thus how much of the drug to prescribe? Especially with RSD, when nobody knows very much about anything before you even start.

And another thing. I take several pills regarding high blood pressure (my blood pressure is now too low by the way, ha ha flipping ha). One of them also relates to my Raynaud's Syndrome - permanently freezing feet and hands, just the thing for RSD!! The manufacturers of this have decided in their infinite wisdom to cease packaging this drug in packs of 56 tablets. It will henceforth be in packs of 60. In the meantime they have ceased providing it altogether, leaving dispensaries and therefore patients in the lurch. There is no directly comparable drug, so I now have to take up a valuable GP appointment so that he can work out what to do for the best. As it turns out, I can discuss the results of hurling crumbs of my mind at the Pain Consultant earlier i the day while it's still fresh in my mind so it's no bad thing, but how ridiculous.... A rational person might conclude that it ought to be easy enough for the drug manufacturer to provide dispensaries with some blister strips of the drug in no packaets, leaving the chemist to use their own plain white packets to box them up, but I suppose that's far too sensible to be worthy of consideration.

A Glimmer Of Hope Re Sativex

So it turns out it just might, MIGHT be possible to get Sativex, although possibly only privately and heaven only knows what that might cost and therefore whether or not I can afford it. And it would all depend on my GP or pain consultant being prepared to bend the rules ever so very slightly - if the system still allows for it, as the piece of information I've gleaned is dated December 2005. Basically, a special case would have to be made on my behalf to the Home Office, who would then (hopefully) allow an individual import licence to be granted to allow the drug to come in directly from Canada, where it is manufactured.

Hmmm.... it all sounds a bit dodgy, don't you think? And my new GP is very young and keen and doubtless hoping to be a GP for a good many years yet!! If only I'd known about this before my former GP retired - although whether or not he would have gone along with it is open to doubt in all honesty. He was a great believer in doing things by the book.

One thing's for sure. I don't think my consultant will be a lot of help. I've asked him to help me with something that's a little bit rule-bendy before regarding pain relief and his response was, to say the least, negative.

I'm not going to give up on this. People living with chronic pain deserve whatever pain relief is available and effective, regardless of what condition they suffer from. It shouldn't be dependent on how well known your afflicton is, nor on how badly a team of faceless individuals sitting in an office say you are suffering despite the fact they've never met you nor ever will.

Life in the Slow Lane

Hi :)

Reflex Sympathetic Dystrophy is a cruel and little understood condition which is characterised by constant, relentless neuropathic pain manifesting itself in every conceivable way - and some you couldn't even begin to imagine as well. In my case, what started as a sprained left ankle has led to RSD spreading to encompass every joint in my body, while the muscle groups in my lower legs are affected by spasms and cramps many times per day. There is severe muscle wastage. The tendons and ligaments in the lower legs are also affected, as they are in the wrists and hands.

There is no cure for RSD. There is no truly effective treatment. High doses of anti-convulsants are taken to combat the worst of the pain and the spasms together with opioid painkillers and muscle relaxants in the form of anti-depressants, but really this isn't overly successful and the side-effects are, quite frankly, appalling. The numbing of the brain, the confusion, the memory loss - they're frightening enough. I shan't bore you with any more. I get about with two walking sticks on a good day, two arthritic crutches in a bad day, and for distances longer than 100m I have an invalid scooter.

There is a drug that might help. Cannabis, if it were legalised for medicinal use. But it isn't, and despite the wretched pain I'm not prepared to break the law. But joy of joys! A cannabis derivative pharmaceutical drug has been produced. It's called Sativex. It would, my consultant has admitted, in all probability help me. It would almost certainly relieve the dreaded spasms and cramps, if nothing else. So why, I hear you ask, am I not being prescribed this wonder drug? Well, it's those lovely people at NICE again. (Has there ever been an acronym less appropriate? Do tell.) Sativex hasn't been licensed for prescription in the UK yet. In Canada where it's manufactured, it's been approved for some time.

My Pain Consultant has also told me that he feels very certain that if/when Sativex is licensed for use in the UK it will only be available for sufferers of MS. That's it. For people with other, less well known conditions, forget it. Carry On Suffering.

Obviously I have got every sympathy with MS sufferers and it's quite right that they should have access to this drug. My point is simply that it shouldn't be uniquely them. There are others. People on the sidelines with "Cinderella" conditions that most haven't heard of. People struggling along, in pain, living life very much in the slow lane. People, if you will, like me.