As I Am Now

Is a whole area that's irritating the hell out of me at the moment.

It has been helpful to learn, via the EDS diagnosis, that I (rather ironically) don't respond well - if at all - to painkillers. This means that the whole area of pain control is more complex than I originally thought it was. Which probably means a pain management clinic. However, I'm quite stressed about having to go to one of those, since I hear they make you do 'courses' that sound remarkably irritating, along the lines of the rubbish I sat through for the 'self-management programme' that the Expert Patients service-thingy runs. Admittedly, this may be better. I don't hold out much hope, though. In the meantime, my body continues to do highly frustrating things with painkillers - anything except getting the rid of the pain. Helpfully. Today I am utterly exhausted, to the point of not being able to get out of bed, because I took Solpadeine instead of yellow Migraleve. They contain *exactly the same ingredients*, but one gives me horrific side effects and the other doesn't (and helpfully, the cheaper version is the one I can't take). Why? I don't know. I just know that this happens to me a lot (the most amusing examples being when doctors give me generic versions of drugs where I've only taken the branded type before, and I react so differently to it that it might as well be another medication altogether). Whatever. I need some help with it, and GPs seem completely unqualified to do anything except recommend paracetamol (hahahahaha), so it's going to have to be a pain clinic, and hopefully one that will allow me to do slightly illicit things like (carefully) combining drugs that shouldn't really be combined and playing with dosages and so on. Bah. We shall see how it goes.

I start physio with an EDS specialist in a few weeks. I'll probably start documenting that here. The whole diagnosis and what it all means is doing me head in a bit.

And with that I return to my nap.

Happy Saturday, all. I'm sitting in bed with my laptop (oh, how I love lazy mornings) and a cup of tea. Friends are coming over for coffee this afternoon. All very pleasant. The Girl is away, but I am coping reasonably well, so far. If mostly living on cheese.

Things have been interesting for the last few weeks, mostly from a mental health point-of-view, with a huge amount of anxiety in response to stresses over benefits. Getting approved for home care should start to help with that. I still need to appeal the DLA decision, if I can face it and if I decide it's worth it, but I'm generally starting to feel a bit better about all that. The Girl and I have decided that since we can't fix these things, it's better to carry on in our usual plodding determined way. Which is good. In physical terms, Lyrica continues to make the pain a whole lot better, although I'm still getting flare-ups - the last few days have been very achy, and I don't think I'll be using my hands much today. The wheelchair continues to help A LOT, particularly with fatigue - which doesn't bother me nearly as much as it did, especially since I'm having a very quiet life and pacing myself.

So. The next test of things will be increasing my activity, which is my goal for the coming weeks/months. I've started an art class which is turning out to be lots of fun. This week I'll be planning the Disability Equality Training that I'm delivering for my church, as well as trying to get the last bits of publicity sorted for the Great London Trek, which is on Friday! (Come on, people - sponsor The Girl on her 17-mile walk - the Fibromyalgia Association UK is a tiny organization that needs money!) After that I want to look more seriously into volunteering - a centre for people with learning difficulties has said that they might want me to volunteer with them, and they seem fantastic and very 'social model', so that could be fun. Then I need to sort out care - direct payments and advertising and a PA, oh my - and then start thinking about the Disability Equality Training in more detail, as I think I want to go freelance as a trainer. I also need to think about the odd benefits situation that The Girl and I are in, and try do something about that, even though that could turn out to be complicated. Fortunately, to support all that activity, I've got hydrotherapy starting soon, and after that I'll start getting regular remedial massage. And of course there'll be regular home care at some point quite soon, which will help a LOT.

Um. Yes. So if I survive all of that over the coming weeks, we shall see how the condition responds. My ultimate goal, of part-time teaching alongside some other work, may or may not be possible by September when the colleges start again. Will see how it all goes.

Take care, all. I'm off to find more tea.

It's been a while. Hence, I have some things to write about now. Hurrah!

Complementary therapies

My physio has been trying acupuncture on me, since there's not much else she can do for me now (I'm waiting on the NHS for hydrotherapy; graded exercise has been complicated but I'll talk about that in a minute; I'm going to get remedial massage from a specialist shortly; exercises and stretches continue as usual). I've had two 'goes' at it now. The first time, I was completely exhausted straight afterwards, but I had fantastically reduced pain levels for three or four days, and since then I haven't had nearly as many problems with myofascial pain as I usually do. However, this week's session hasn't been nearly as effective. I wasn't so tired afterwards, but I also haven't had the pain relief I got before. My shoulders are a little bit better, as is my hip (where she put some needles, as I was having trouble with it) but my neck and back have been terrible for the past few days. I've had too much pain to walk very much at all. It's possible, though, that the weather changes and other factors may just be overriding any benefit I would have had if other things hadn't been making pain worse. I'm still quite impressed with acupuncture and will give it a go again in the future. At the prices they charge for it, though, I won't be doing it every week. Whereas I hope to get remedial massage a couple of times a month, as it really is amazing for the trigger points in my neck and back. Yay.

Counselling is also going very well. We are working on some ways to get me interacting with the world again. I'm trying to 'push the boundaries' a bit - not in a physical sense, as that would be dangerous, but in the sense of going out a bit more and trying to let myself have a bit of a life. I'm using the wheelchair more, trying to do some of the things that I used to, even if that's just going to the library or the shops or a cafe. So far, so good. Next step is to sign up for an art class, and then hopefully some voluntary work.

Traditional medicine

Lyrica is the best drug ever. It's increasing my stamina just a little bit, and decreasing my fatigue. That wasn't the aim - but I'm really happy about it! As yet, no major effect on pain - so I'll ask my specialist if I can up the dose. It's definitely doing *something*, so I have high hopes for some effect on pain at a higher dose. In addition, it's helping with other, more complex problems related to the FMS (will explain in a minute), which is great. It does cause some dizziness and tiredness in the mornings, but it goes away fairly quickly - and it's generally worth it.

Still taking zopiclone to sleep (Lyrica 'seems' to help me sleep, but I don't get great quality sleep with it) and a low dose of antidepressants (controlling the dose myself). I think the combination is finally helping me to start feeling a bit better.

Graded exercise/physio stuff

I have a date for my assessment for hydrotherapy on the NHS. After that, there will probably be a really long wait for the actual treatment, and I don't know how many sessions I'll get. I'm hoping to get a fair few, as my consultant has recommended it for me, but funding for physiotherapy on the NHS is so limited that I may not get it at all. We shall see what happens.

Graded exercise started to cause me difficulties a few weeks ago, when I tried to increase my walking to over 100m - pain while walking, increased pain after walking, exhaustion the next day, etc. Discussed this with my physio, arguing that I need to have a LIFE as well as mobility, and that I'd rather not push myself this much all in one go. We have agreed that, as long as I'm staying active on a regular basis, I can do 'short bursts' of walking rather than trying to do a lot (for me) at once. So far, this is better. I walk when there's somewhere I need to go and I feel up to walking, and if I don't feel up to it then I make sure I'm reasonably active around my flat or for short distances outside. Otherwise, I use the wheelchair - which is the thing that has been bringing me the most relief from pain and fatigue recently. Being able to go out in it and actually have a life is absolutely wonderful, after months of being stuck in the house.

Depression and all that jazz

This has lifted! I feel much better in this respect. I feel a bit better anxiety-wise, too. Probably because I'm getting out and about and having a bit more of a life (wheelchair, again - best thing ever), but I'd guess also because of the Lyrica, which is also used to treat anxiety, and which I believe is is chemically similar to the Tegratol that I used to take for the bipolar disorder. I feel a little bit crappy about having to be medicated for this again (even if it's just a positive side effect of medication aimed at treating something else). But quite frankly, I've been under so much stress recently, of a sort that the most 'normal' of people would struggle with, that I think I've done really well not to get more depressed than I did. Let's hope it stays away. Things are easier to deal with when I'm generally more cheery.

Doctor not having received consultant's letter means I have to wait until next week to start on the anti-convulsants. This has upset me more than it should. I know it's only a few days, but I am SO hopeful about this medication... I should probably be careful not to expect it to be a miracle drug. After all, it took years to find the miracle medication for the bipolar disorder... I'm just so, so desperate for 'the cure', you know? Sigh. I have had a tough week. No major setbacks or anything, but I feel like my life is going nowhere. I want to go back to work, but I mustn't rush it. I want to do something, anything that's worth something, even if it's only answering the phones for a charity - but when I can't walk more than 100 yards without serious pain and I can't sit through a church service without serious fatigue, I know that's not likely to happen next week. I just need to keep it in mind as a goal for the future. I am absolutely determined to get back to teaching by September, even if it's four hours a week from a wheelchair. I'd so much rather be working and using disability aids/support than sitting around the house feeling pointless... Next week I start e-mailing everyone in the world asking for work experience and/or training, yes I do. E-mails don't take too much energy.

Until this mess with Disability Living Allowance is sorted out, and until my anxiety (which is running out of control) starts to calm down, I'm going up to 20mg of citalopram. I got permission from a psychiatrist a couple of years ago to control the dosage myself, for short periods of time, and that does help me. 20mg occasionally causes hypomania, but that would be a serious improvement on how I feel right now. I wanted to cut myself this evening - serious thoughts about it for the first time in quite a long time. I haven't done that for over a year, and I'd quite like not to add that to my list of worries at the moment. Hmm.

Can we say 'clinical depression with severe anxiety'? Sigh.

Physical progress continues at an extremely slow rate, but at least I've stopped deteriorating, as far as I can tell. I am keeping my walking to 100 metres, once every day, as that's better than overdoing it one day and doing nothing for the following two or three days while I recover. Doing trigger point reduction stretches every day. I may or may not get hydrotherapy, depending on waiting lists and whether the NHS physios like the look of me. Desperately hoping the anti-convulsants do something for the pain. It's getting so very tiring. It's not horrific - it's just constant. Gets old. The one thing that is really helping the fatigue is the wheelchair (oh, and the blue badge of course). I'm happy with that.

See cornflakegirl23 for news and rants. The usual. :D

General progress

Walking every day. Still stuck at about 100 metres, unless I'm silly and push it further than that - my physio wants me to build up to more, but I think I'll stick to what I can do for at least the new few days, because I'm so enjoying the slightly increased energy from the wheelchair that it seems a shame to ruin it just yet. It's a bit of a dilemma - she wants me more mobile, which I am generally in favour of, but not if it puts me in bed for days. Is problem.

The stretches the physio gave me are excellent, although I forget to do them some days. Oops. Must do better. Still looking for hydrotherapy in my area. Not sure I could afford it, but finding it would be a start!

Pain levels fluctuate. My back was bad today, but I was too sleepy and dizzy to take any medication. Today was a bad dizziness day. Felt weird. Ah well. Other days have been fairly unbearable with the pain. It just varies. My knees were awful for a few days but now improving.

Fatigue is not worth documenting anymore. I am learning to live with a new, if very reduced level of energy. Enough to measure out my coffee spoons and do tiny things. If I can read a few pages of a book, watch a TV programme, take a shower and talk to The Girl, it's a reasonable day and I'm happy. Good days involve having visitors or maybe even going to see people if they come and pick me up. This is all fine. There are people with far worse levels of fatigue. Acceptance and pacing is beginning to work for me. No more worrying about it. From now on, just coping.

Seeing rheumatologist aka scary!doctor tomorrow. Oh... dear. Must write out all the reasons why I don't want any more anti-Parkison's drugs (the guy is so keen on those that he doesn't want to prescribe anything else), and summarise some of the research I've done and what I discussed with my GP. I will stand my ground. I believe that part of how I got into this mess was years of being on hardcore medication. I'm not prepared to make myself worse with experimental treatment that may or may not help... We'll see how he responds to that! Also, I can't afford to see him more than once or twice more. Which could be an issue, as he wanted to keep seeing me for a while. Hmm.

Physio was utterly FAB. In the space of half an hour I went from 'my back actually wants me dead, and I quite agree with it' to 'this walking back from the bus stop thing is quite pleasant, and maybe I could make BSL after all, ooh and fill in a few forms, and apply for a voluntary position, and do a bit of painting, and read a book and actually focus on it...' She prodded me for half an hour, is all. She's a miracle worker. She keeps saying "It's fine if you don't want to make another appointment, since it costs you money and we've set you up with an exercise programme now." And I say "Maybe just one more appointment." :D I know she's expensive, but blimey is she worth it!! My one irritation with her is that she WILL NOT work out my trigger points. She massages them and prods them a bit, but it's all very light and fluffy. She keeps saying she doesn't want to hurt me. I know that loosening trigger points hurts like you're being run over by a sixteen-tonne lorry, because I do it for myself when I'm feeling brave enough - and I really don't mind that, because it will improve them in the long run. But there you go. She's referring me to a couple of places for remedial massage, which is what I'm going to have regularly when I stop seeing her, and I should be able to sit down and discuss with them about what will help me and so on. (Sweet person that she is, she's making the phone calls on my behalf, because she doesn't want them doing the wrong things with me! Aww.) So then I had a nice, restful, extremely quiet afternoon and was able to get to BSL and even get through it OK. Who knew?

Someone at BYDLS who has psoriasis just told me more about it in one post - and gave me more useful advice - than the dermatologist who diagnosed me. Which, thinking about it, isn't hard, as he was completely crap (such is my constant experience with the NHS at the moment, sadly). So it's an auto-immune problem. This is interesting. I still think there must be a connection to the fibromyalgia, since they appeared more or less at the same time. Who knows, though. Anyway, another exciting untreatable lifelong condition to add to my ever-growing list. There really appears to be nothing you can do for this one except get some sunlight. This is a problem, especially when it's covering practically my entire body. It must be sheer dumb luck that the only place where I don't have any at all is my face. Not that I'm complaining about that!

General progress

- Am walking and doing my stretches every day. Physio now wants me to build up to a bit more walking. I am nervous of this but am going to try. She gave me some new stretches for my back, which are very good. It's such a mess at the moment. She was barely touching me when she was massaging me and it still hurt like buggerydoodlefuck. Constant migraines are a result of all the trigger points in it. Poor back...!

- Lots of bad days. More fatigue and migraines than pain, although today was a nasty exception (but things did improve after physio). As a result, have been able to stay away from the painkillers some of the time, which is a plus. Some good days. We focus mainly on these. Yes.

- Am putting on weight, slowly but predictably, and should probably do something about this. Don't really want to, but really should.

- Have determined that I will cheer up. I am NOT bloody well going to get depressed. I have worked too hard to give in now. Acceptance is the order of the day, even if that means pissing off a few people (the type who think I'm a freak because of all this hard work I'm doing to measure out my life in coffee spoons,* and who can go take their marvellous healthy bodies and go jump off the top of a very large flight of entirely inaccessible stairs as far as I'm concerned). Must ring that counsellor who was going to see me for reduced rates... Hmm.


*TS Eliot, 'The Love Song of Alfred J Prufrock', 1917 - a poem that I don't like all that much, but which seemed to demand a semi-quote there. :D

Last couple of days

Yesterday was a particularly Grand Day Out for me. Using the wheelchair meant I could have a busy, fun and entirely independent day doing all the little things that I used to take for granted, that used to take me half an afternoon but would now usually take a week. I was so pleased and encouraged to find that I had a reasonable amount of energy and lower levels of pain at the end of the day than I usually do, even though I'd done my recommended amount of graded exercise therapy and all my stretches and so on.

Today was harder work, as I overdid it this morning and had to sleep all afternoon, and woke up in stupid amounts of pain. Gave in and took Tramacet, which has taken the edge off it. Went to my British Sign Language lesson this evening. I am Good and Productive. Dyspraxia, not pain, became the overriding concern when we were doing an activity involving placing signs in space. I couldn't for the life of me work out what spaces/directions/areas other people were trying to demonstrate. Hee. (It was weird and a bit sad to be back at work, where we do the BSL course. I ran into some colleagues, who were lovely but wanted to know lots of details about whether I'd be coming back next year and what I was doing with my time and so on. Blah. Need to clear out my desk, too... That will have to be week after next, when The Girl's home again.)

Exercise etc

Am keeping up the graded exercise, and generally doing pretty well with it. As long as I stay under 100 metres I can exercise every day, which is a definite improvement from my former overdo-it-and-collapse vicious cycle of exercising. The stretches that the physio has given me to do are excellent, if a bit painful, and I hope they'll increase my range of movement, since that is pretty crappy at the moment.

Have not been doing quite so well at the 'do something constructive every day' thing, or indeed at following a routine as I am supposed to do. However, I just designed a new routine with lots of options and choices on it, with the aim of balancing rest and activity, and changing activities every hour - which has been recommended to me. (It's actually supposed to be a change every 20-40 minutes, but my brain seems to work better in hour-long chunks, so I'll just make sure I stand up or move around every 20 mins!) So we'll see how that goes. The hardest things are eating regularly (which my body really doesn't want me to do much of, at the moment) and getting sleep, since I really hate battling with insomnia/waking up all night... Tomorrow I want to work on content for the website about The Girl's sponsored walk, practice some BSL, go out in the chair to buy some little things and go to the library and maybe even get my eyebrows shaped, and finish my book. An easy, quiet little day, then...!

Weekend

We went to Oxford to see some old friends of The Girl. There is a story there, about how incredibly dull and middle class too many people are, which I'm sure I'll be telling on one of the other blogs shortly. The journey there made for a tired day on Saturday and a painful day on Sunday, but nothing particularly unusual. Lot of shooting joint pain, more than usual, which is a bit odd. Physio thinks my stiff muscles are trapping nerves. I walked about 100 metres each day, mostly through necessity.

Today

The wheelchair has arrived! Pictures are on their way. I haven't actually had a chance to use it yet, as I am technologically impaired and so The Girl needs to set it all up for me. It looks pretty, though. :) I've spent the day applying for things that I can now get because of the high rate mobility DLA. Yay. Although all the writing etc has hurt my back. Less yay.

Went to see physio this morning (got buses and saved my 'spoons'). She is so nice. She told me I was pushing things too far/fast. I am not allowed to try to take my walking any further than about 50-80 metres until I can do that every day without it causing me to crash spectacularly and collapse for three days. I got some excellent muscle stretches that I can do at home, and she poked my trigger points (OW!!) to try and stop them doing the 'nerve trap' thing that's causing joint pain. She's referred me to a good (and not too expensive) massage therapist who works in the same health centre, and she's going to try acupuncture on me next time. Ooo.

BP has jumped up to 135/90 and stayed there for a couple of days now. I think it's time to give up taking it and send in the readings to lovely!doc. Maybe he can tell me why it fluctuates so much. I seem to have a wide range. *shrug* My bp started plummetting when I first got CFS symptoms (hence my constant dizziness) so it's probably quite a normal thing with this illness.

Am cheerier most of the time, but I really need to get my routine sorted out, as that will really help me to feel a bit less trapped and depressed. Will start thinking about that tomorrow. I need to split up my activities into 20-40 minute bursts, like my consultant recommended, rather than sitting in one position at the computer for two hours and then wondering why my back and neck hurt. The Girl is going away again next week, for a whole week, so I need to start planning what to do with that week. Visitors are once again welcome! And I may see if my dad will put me up for a few days.

Brain fog image

Someone on a livejournal fibromyalgia community made this image. I think it's such a fantastic visual representation of FMS 'brain fog' that I just have to post it. The artist responsible isrebbelle1 and the original link is here. Anyone with other interesting ways of representing FMS/CFS etc symptoms - visually, linguistically etc - needs to point me towards their work. *nod*

BP this morning: 108/68. Now that's more like it. Trying to take a reading tonight involved cutting off my circulation - my hand went red then purple - and causing serious pain, so I can't confirm it, but it seems to be 115/85. It's always a bit higher in the evenings, even before I've taken any medication. I don't know why that would be. Hmm. Ah well.

Incredibly tired all day, not helped by this cold I've picked up. Thought it was just sinus problems at first, but it seems to be hanging around, ergo cold. Coughing hurts. Grr.

Walked about 100m this evening. Can't get it down to much less than that, if I want to feel like I've done anything at all. At least I'm getting out most days. A bit of pain when I got back - off to bed soon, see if that helps. Can't yet be sure if getting the regular exercise is *causing* the added pain and fatigue, or just co-incidental to it. Will keep an eye on it all.

It's odd, how I felt weirdly validated when I heard today that I can have an NHS wheelchair if I want one. I *still* have a persistent tendency to tell myself that I'm making all this up, or at least exaggerating it - even though I know in my head that it is not normal to be this exhausted, in this much pain, and so unable to move or get about most of the time. It's not getting the wheelchair that's good (although it will be nice to have a back-up for the electric one), but rather being told that I need and deserve one. Which I knew, but which a lot of people's reactions recently have been making me doubt, too. Interesting. Ten years as a disability rights advocate/campaigner, and apparently I still *believe* some of the it's all in your head shit. Random.

Tomorrow we're going to Oxford for TG's friend's birthday meal. Seeing people! Excitement. We'll see how I do with the travelling. Have been much cheerier today. It's been nice that The Girl's been around (doing some home studying). I get lonely otherwise. Altogether now: aww... :D

Things that waste my time are highly irritating - especially at the moment, when everything takes so much *more* energy and time than it used to.

Yesterday

Spent far too much time in hospitals. After a rather wasted £14 taxi fare to St Thomas's, the dermatologist didn't know what was wrong with me, but thinks it's "probably" psoriasis. Got a pot of moisurising cream for it. Thanks. Three minutes in and out - the NHS is so great. Then I had to wait 25 mins for my prescription at the hospital pharmacy... I walked at *least* 100m (meaning that, once again, graded exercise really isn't being graded) because these bloody hospitals are so huge, and it's not like they had a wheelchair sitting around. Hmph.

Then I went to my new FMS support group, which was in an entirely different hospital. That was great. They were lovely people - there were about 25 of us there. A doctor invited us all to participate in the European trial of Milnicipran, which I got quite excited about - before realising that I wouldn't be allowed to take *any* medication, even for pain or sleep, which would be a bit crappy if I ended up with the placebo. Nice thought, anyway. Then there was a speaker on Part 3 of the DDA, which was fun and I learnt some stuff I didn't know. Like how my landlord now can't stop me from making changes to my flat for access etc - so I might see if social services would assess me for a rail in the bathroom and so on. I'd pay for it myself, I just want proof that I need it - before I fall and break something, which is going to be quite soon I think...

It was generally a better day. Only needed one lot of pain meds. BP 121/80 and 124/80, i.e. getting much better. Saw at the Royal Free (hospital) that they have a hydro pool. Since my private GP seems incapable of finding me one, and I couldn't really afford it anyway, I wonder if I should ask my NHS GP to refer me. Maybe.

Today

Even more irritating for wasted time. Trekked all the way to the place where I was meant to be assessed for a blue badge, only find that someone had screwed things up with my appointment. After that I was very cold for hours, and then too tired to do anything except lie around watching TV. Nice. No pain medication, just exhaustion. It seems to be either pain or tiredness - either/or, so not usually both, but always one or the other. BP is down to 117/77 (127/81 tonight, but it does seem to go up during the day), so I'm happy with that. I am also enjoying the break from all the other side effects. No more strong medication for me. Nope, nope. Walked about 100m (church). I'm giving up on this GET thing until I get the wheelchair (Monday) and can put an actual limit on the amount I walk, yet still get to places. Will be useful.

Feeling very low today. Don't know why. Will work on cheering up. Wheelchair assessment from the council/NHS tomorrow. I'd better have that date and time right.

Feeling really quite *blah*, but should blog - since I'm being so crap at keeping any kinds of paper records at the moment.

See my other journal for why I have to take regular BP readings, twice a day, and e-mail them in to my doctor. :O Still, it's nice that he cares!

Symptoms run-down

Pain! Back, shoulders, neck, legs. Back especially bad. Pretty unbearable in the afternoon, despite decent dose of tramadol. (Also took two migraleve in the morning. Migraine then went away.)

Fibro pain is hard to explain - especially 'cause it's different for everyone. I get what can only be described as 'aching' - but that description doesn't do it justice. It's still probably the worst pain I've ever experienced. Then, fairly regularly, I get shooting pains through joints. On occasions I also get burning pain. And when my muscles are twitching and pulsing, it turns into a *throbbing* pain that really, really isn't good. Today involved all of the above.

Oddly, I am not all that tired. Just hurty.

BP at 6pm: 139 over 92. Slightly lower than when the doctor took it earlier today. Good sign, I think. Bad meds leaving my system.

Walking and other treatments

Did at least 100 metres - went to evening Mass at church. Yes, this is too much. No, I can't be bothered to worry about it. 'Leccy wheelchair will come soon and I will pace myself much better then. The walk helped while I was actually walking, but pain got worse afterwards.

Sadly, lovely!doctor seems unable to find me a hydrotherapy pool. I would really like to try it, as I hear that people get *serious* pain relief from it - my friend from uni did almost no other treatments for her FMS except hydro, and it got her functioning again after flares, every time. Hmm. Maybe I'll just see if I can find a warm-water pool to sit in. There must be one somewhere in London.

Meanwhile, was looking into finding a yoga teacher today, one who will work with me in a structured, careful way. They seem appallingly expensive, though. Might see if I can find a class, and discuss things with the teacher there first. Again, this should be easy to arrange - except that getting there and so on is a bit of an issue.


The Girl was off work today with day four of her latest migraine. She now has preventative pills for the migraines, of which I am a bit jealous (not allowed them until I'm more settled with FMS medication). We ate a lot of chocolate and watched Lost and Sex in the City. Much fun, despite much pain all round. We are now permanently camped out in the bedroom, hamster included. I have no objection to this. The Girl did point out that, if we're going to live our entire lives in one room, we could save a lot of money by living in a studio flat. Hmph.

 

Today

Walked to church and got the bus back. Probably came to just over 100 metres (thankfully, I attend my parish church, not some far distant one!) - which I will report to the physio as 50, because she told me to start there. But if I had done only 50, I'd have had to sit down in the middle of the road for the rest of the day, which would sort of get in the way of going to church. Logically speaking. Really, though - isn't it better for me to do a bit more if I have a good day, and less when I have a bad day? You would think. Hmm...

Not feeling too bad for the exercise. Resting completely yesterday really helped my overall pain levels. Which does start to prove physio a bit wrong. But there we go. :)

Have stopped taking the Requip (after checking that it's safe to do that). Decided this after talking with The Girl about how I cannot in any way handle that kind of medication. Now I have to decide what I'm going to do - whether I'm going to try only drug-free treatment, which is a bit of a risk, or go back to scary!doc and ask for entirely different types of drug treatments (which he has never offered me). I'm talking to people from my online community about it - there are several FMS peeps there, some in the UK, and they've helped me to research a range of possible treatments and approaches. I'll be thinking things through.

In the meantime, I'll be ringing lovely!doctor and demanding an appointment, even though he doesn't seem to believe in emergencies, because I need some actual co-ordination of my treatment here. And I want to know if he's referred me to hydrotherapy.  Now *that*, I hear, is superb for pain. Looking forward to it. Mmmm, hot water... At last, a treatment that should be pleasant!!

Symptoms run-down

This morning at church I had a fair bit of pain and muscle twitching, but it got better this afternoon with some tramadol - and a lot of not doing anything.

Currently just tired, mostly. Could be worse.

ETA: Saying that, I've just jinxed myself - my leg muscles have started taking on a mind of their own and jumping around all over the place again. Ouchie. I am trying very hard *not* to say how nice it is that my back hasn't been playing up oops.

Drugs/symptoms checklist:

Yesterday (I suppose it is yesterday now, since it's 5 in the morning...)
Took Requip too late --> throwing up during the night. Not much sleep, despite taking zopiclone.
Woke up with nausea and headache. Took Migraleve. Not ideal, since it wasn't a migraine, but it helped.
Back pain from walking too far (200 metres+) the previous day. Improved later through resting, so didn't need painkillers.

Evening
Took Requip with dinner. Soon got high blood pressure (gets really, scarily high after taking it) and awful nausea. Woke up every hour - definitely causing more sleep problems than I normally have. I've now been awake since 3am (it's currently nearly 5am). Am still nauseous. Fortunately, have not been doing the throwing up thing. Just feel awful.

----

I had a chat with The Girl last night, while trying hard not to panic about how awful this medication was making me feel. The rheumatologist said that if I couldn't tolerate this Requip stuff, he would put me on a different anti-Parkinson's drug. I am increasingly concerned about this drug-heavy, invasive approach. I'm notoriously medication-intolerant -- in fact, the only medication that's never caused me major problems is SSRI antidepressants, and even those I take at such a low dose that, technically, they shouldn't be having any effect at all. When I saw scary!doc and told him about the side effects of these nasty drugs, he had the nerve to tell me that it was stress (he put me on the bloody things, and he's telling me it's all in my head??) The Girl and I are wondering whether I should just stand up to all these doctors whose recommendations are only making me worse, and tell them I want to the most non-invasive treatments I can have. At least to start with. I've heard that the new class of SNRI antidepressants help with fibromyalgia pain. I'm quite tempted to request those, dump scary!doc, get all the non-medication treatments I can, and take things as slowly as is possible. Of course, no one will give me clear advice on what will actually help.

Was out with The Girl in the wheelchair in the morning. No walking though - I was much too tired. We went 'round the shops on the high street and had breakfast out. Then we attempted to use a bus to get home. Those ramps are amusingly difficult to use. It took The Girl pushing me up, and two strangers pulling from the other end, to get me onto the thing :D Electric wheelchair guy rang. We should have the chair sometime next week. Yay!

Two of TG's friends came over in the afternoon. All we did was chat over cups of tea, and it was nice, but it was so tiring. Talking and sitting around should not cause pain and tiredness. Hmph.

We've moved the TV into the bedroom. (Correction: The Girl moved it. I worried, and apologised for not helping.) I don't care that former idiot!rheumatologist said I shouldn't stay in bed. If I'm tired, and it helps to lie down, then I bloody well will. So there. Also, TV in bedroom is nice. :)

I wonder if I'll get any more sleep tonight.

 

So, first day of pacing did not go so well. Not because I didn't walk enough - quite the opposite. It was a YLGC social, and being a co-moderator, and having missed the last exec meeting through illness, AND given that I was having a very good day, I decided to go and join them. They were very nice and accommodating for me, and we mostly stayed in one place - but I still probably did half a mile of walking, even though it was all split up through the evening and I didn't do more than 100m at a time. I am so going to suffer for this in the worst possible ways tomorrow. I shall not be relating this tale to the physio. :) It was a really lovely evening, though!

My current care plan

This being my first serious post, I thought I'd start by listing my care/medical team and how I see them as helping me. This is mostly for my own use, since I get rather confused about who's doing what.... And since I'm in charge of this team, I need to know what they're all doing. :)

Care co-ordinator: Private GP, aka lovely!doctor (when he's not being an idiot). He's my first port of call for referrals, general advice on treatment, suggestions for new medication (of the more straightforward types), etc. Eventually I want to be seeing him about once every two months for a review of how everything else is going; it's more like fortnightly at the moment.

Specialist: My rheumatologist and fibromyalgia expert is scary!doc (so called only because I get scared before going into his office - he's a bit of a teddy bear really - although I wouldn't tell him that). He's there to do the more aggressive and experimental treatment - the long-term medication regime that we hope will eventually reduce my pain levels to a more tolerable point. I do like this guy, as he is seriously up on his FMS research, but I sometimes get nervous about his drug-heavy approach. However, I'm willing to stick with what he's giving me and see how it goes. He's not too interested in what else I'm doing, in terms of physio and so on, but he's happy for me to try such things.

Physiotherapist: It's hard to know, as yet, whether she'll be lovely!physio or scary!physio. However, she is clearly very good. I'll be seeing her for the non-medication side of things, in terms of ways to reduce my pain levels and increase my mobility. I'm still seeing this as a bit experimental for me, right now, because people with FMS respond in varying ways to graded exercise, and not always well. But that's not all she'll be doing for me - she also wants to try trigger point release massage, acupuncture, setting up a stretching programme that I can do at home, and recommending other useful things for home use (like the TENS machine she recommended today). I will be trying out everything she suggests, but stopping anything that doesn't work for me. It's a good opportunity to explore different kinds of non-drug treatments, while I'm seeing her - I can then take some of those forward if they're good.

Other therapies: I've been meaning to ring up about remedial massage soon, to give that a go, since my doctor suggested it and it's meant to be ever so good for muscle pain. I also want to try hydrotherapy and occupational therapy at some point soon. Hydro is meant to do great things for muscle problems, and a few sessions can change a lot in terms of pain. The OT could be interesting, as I want to get a whole routine sorted out, since I've heard that good routines help FMS enormously. Also, an occupational therapist could assess my whole living situation and tell me what sorts of things could make life easier for me, from mobility equipment to little adaptations. Oh, and I will soon be seeing a counsellor who knows about chronic pain, mainly to help with the outlook adjustments that I'm having to make. But also because I'm feeling a bit low. Understandably.

Drug dealer: My NHS idiot!doctors. I have to be registered with them. They like to think that they're co-ordinating my care, and I let them enjoy that little illusion. They are there, as far as I'm concerned, to hold my medical records and give me prescriptions for my medication. I have yet to find out whether they will be willing to prescribe me the Requip that my rheumatologist has put me on, as it's an off-label (i.e. unofficial) use of the medication, and some NHS practices won't agree to that. So I may have to pay the extortionate private costs for that one. However, they will bloody well be giving me my tramadol (painkillers) and antidepressants, and there will be NO complaints from them about that. I will start making subtle references to lawsuits and the DDA if they do any more refusing of such things. Yes.

Benefits and council services: Wheelchair assessment coming up next week, so then I can get advice on its use, and we'll have a back-up NHS chair for when the power goes on my (soon to be bought) electric one. The saga of the blue badge (disabled parking permit) assessment has been posted on the other journal, but that should eventually mean much easier mobility when TG's driving me around. Disability Living Allowance form is being processed, and they say I'll hear very shortly (and, in fact, they sounded quite positive on the phone) - I do so hope I get that, as it would mean I could afford all the physio and so on that is currently eating away savings, and it would help towards buying the 'leccy wheelchair. We are still waiting for the social services assessment that will look into both our needs, although focusing mainly on what support The Girl needs in her caring role. We have not done so well with benefits so far - despite our council rep's intervention, they still maintain that we can't have housing benefit or help with council tax because The Girl has too many savings. Even despite our slightly unusual situation. We've got the MP looking into it, however, so you never know. In the meantime, I will get short-term incapacity benefit as soon as work stops paying me.


General lifestyle adjustments to be explored in a future post. Project:pacing starts properly tomorrow, then. Which is good, because I really won't want to be walking more than 50 metres tomorrow, after the evening I've just had. Hmm. Maybe I'll start at 5 metres...!

And the zopiclone sets in, with its helpful sleepiness. Goodnight, anyone silly enough to read this far. I hope you all achieve decent sleep that allows you to cycle through all four stages, therefore encouraging your brain to produce the chemicals that will stop you from being achy, tired, in pain, immobile, hyper-sensitive, cold, migraine-y, brain foggy, poorly coordinated, slightly confused, and generally sick. Have a healthy night, in short.

I went to the physio and guess what she told me, guess what she told me?

She said "start a journal". So I did.

It rather made me laugh, as it reminded me how many of these bloody online journal things I have. I've been on livejournal since about 2002, when there were about three of us using it, and I have several other blogs... However, I've been trying to keep a paper log of symptoms etc rather unsuccessfully for three months, and it just isn't working. So this is my alternative. Purty, huh?

So. What I am supposed to be doing is keeping a 'walking journal', and pacing my walking - starting at 50 metres, and adding 10 extra metres a day. Forever. Apparently I can 'push through' the pain this will inevitably cause after 100 metres...

Now, if I take this to the bounds of logical possibility, it means that I will be walking bloody miles in just a few months.

Um...

So, although I'll be trying this, I will not (repeat: NOT) get myself to a point where I make myself sick. I made this clear. She seemed to understand. I said I wasn't going walking without my stick. She said "fine." I think we understand each other. (I trust her - to a limited degree - because, thanks to her very light trigger point massage, I have NO PAIN in my back this afternoon. Stunning.)

In a moment, therefore, I will be going for a fifty metres' walk. In this little journal I will then chronicle, daily or every few days, how far I'm walking and how that affects me. But, since it's here, I will also be using it to post about pain levels, random symptoms, medication adventures, side effects, fatigue, mobility... You name it, it'll be here. Fun stuff, innit?

LIMITED TIME OFFER! Free box of chocolates for the first twenty people who tell me that it's all in my head and that I just need therapy!

:D

You can find the rest of my whining at cornflakegirl23 (although a lot of posts there are locked), or read the more detailed adventures of lilwatchergirl (that's me) at Through Myself and Back Again.

Thank you. Now I walk.