Monday, January 29, 2007


OR On FMS, CFS, depression and life

I've had two insane dreams, two nights in a row.

Last night I was being chased by monsters who looked like people I love, with a group of other people with me. They wanted to infect me with monsterness so that I would become just like them. I had to get away and also protect the other people with me. But I couldn't run fast enough. I kept ending up in supermarkets and shopping centres. I knew I wasn't supposed to be there because those places tire me out, so all I could do was hide. The night before, I was in the halls that I lived in for two years at university, but I didn't have any money to buy breakfast in the dining room and everyone was eating all the toast while I got told I wasn’t getting any food. So I tried to get back to my room to find my money. But after negotiating a complex maze of corridors, I found that my room was locked – because of course, as it suddenly occurred to me, I hadn’t been back to it in the five years since I’ve left university. I ended up stranded in the corridor, being passed by happy, well-fed people who could get into their rooms…

It’s taking me so much effort to do anything. This post has taken me about three hours so far, because I regularly lose the will to move any muscles at all. Combination of pain and exhaustion not helping with that. My ‘to do’ list has been the same all month – listen to my audiobooks, do a bit of painting, look at my British Sign Language CD to catch up with the vocab I’ve missed, do a Hebrew lesson from the book… But I just keep sitting on the sofa. Chronic apathy. Think I could put it down as a symptom on my DLA form?

I am not getting used to any of this. Being told that I have a long-term condition that - although it will wax and wane, and could eventually be fairly well-controlled - stays around for life is not an easy thing to adjust to, OK? I have been pushing myself to stay almost psychotically cheerful for the past couple of months, so as not to upset or annoy anyone. Not to mention being so scared of being told it’s all in my head if I don’t. Well, it’s not all my head. (Oh. Technically it is, since it’s a neurological condition. Um. You know what I mean.) And I can’t keep pretending that I feel fine about all this. I miss having a job – I miss my students, and teaching. I miss having a social life. I miss having a life.

I think, therefore, that it may be time to admit that I'm a bit depressed.

I'm not depressed in a bipolar way, of course. This should be clarified. I could draw a distinction between depression and Depression here, perhaps. It has taken me so long to recognise that something is wrong because it's not as wrong as it could be. Bipolar-type Depression, capital D, is when I want to die, cut myself or sleep all day. I stop eating, have no interest in seeing anyone, get increasingly paranoid, have no desire to do anything, and can't focus on work or anything at all useful. Not much of that is the case at the moment. I want to work. I want to go out. I want to see people. I want not to be in pain. I want to go to a gig, or a play, or the park. I want to go out for a drink with friends. I want to go shopping. I want to be able to make dinner without having to sit down every two minutes because I'm about to pass out, or to have a shower without it causing me so much pain that I have to spend the rest of the day immobile on the sofa. I want my life back. Losing choices, independence and opportunities is making me frustrated. The frustration is making me anxious. The constant anxiety, eventually, is starting to make me feel very low. This is depression, small d. I'm not even sure it would qualify as a mental health problem. (It's also a well-known symptom of fibromyalgia. But I can't admit to that particular symptom, as The Girl points out, with my medical history.) It's just not nice. Extremely not nice.

But then – chronic pain, weird cognitive symptoms, serious migraines, constant physical exhaustion and all the rest are not nice, either. People have recently been writing good things to help other people understand this sort of thing. The marvellous Jillian wrote a fantastic post about Lupus and how it affects her every day, to raise awareness among her friends of what her life is like. On BYDLS, Carolyn just explained all the steps involved (and spoons lost) in having a shower and washing her hair. I’d really like to do the same. But, as I told Jillian last night, I’m too afraid. I’m afraid that, after years of learning to deal with bipolar disorder and raising awareness of it (pretty well, if I do say so myself), people will think I’m collecting diagnoses, seeking attention or just making a fuss. It could, therefore, be a little while before I can get my head around things enough to be comfortable with being more open about this condition and how it’s actually affecting my life. To challenge people who think it’s all in my head. To explain myself to those who are annoyed that I’m not managing to do what I used to be able to do. To learn how to cope better. To start moving off the sofa occasionally.

But, just to be clear: I am not OK just yet.

That’s about it for now, I think…

Friday, January 26, 2007

A week in pictures. These weeks - they do insist on happening, don't they?

On Monday, I went into work. I sorted out some things that they've been demanding from me for ages, then handed in my notice. They've agreed to end my contract at the end of January. I am going to be ridiculously poor, but my stress levels immediately dropped by about 50% and that has had quite a positive effect on the pain. No bad thing, really. I have had a few little crying sessions about giving up teaching, which is a serious part of my life and identity, and not being quite sure what my life is for at the moment. I'll get over it - and I'll be working part-time again as soon as I physically can. Things could be a lot worse.

On Tuesday, I locked myself out of my flat while in my pyjamas. Then I had an appointment with a fibromyalgia specialist. I got a diagnosis, which was no surprise, and recommendations for a treatment programme which were something of a surprise. I was very shocked and upset when we got home, possibly through a mixture of relief at finally knowing what's wrong, and frustration about once again not being consulted over treatment or given full explanations. He's a good doctor, but we were in and out in about fifteen minutes, we didn't get much at all in the way of information over the recommended medication, and we paid a small fortune for the privilege. I have some concerns over some of the medication itself, too. I'll see lovely!doctor GP next week to discuss the options and what he suggests I do next.

On Wednesday, there was snow on the ground when I woke up. Then we went to get a hamster. He is called Whitby. He is nice and I like him. And no one is going to feed him to any cats.

Yesterday I went to my BSL lesson for the first time in ages (turns out I haven't missed all that much - they've been practising numbers for about four weeks). It was nice to get out. Then I discovered I had locked myself out of the flat for the second time in three days. I wandered around in the cold for a while until The Girl found cold, achy and cranky me and took me home. Yesterday was also the day when we discovered that, because we live together and The Girl has savings, I cannot get the benefits that long-term sick people usually get to help them with local council tax (ridiculously expensive that is around here) and rent. Very soon, I will therefore not be able to afford to eat. I'm supposed to live off The Girl's money - but it's hers, and I will not be doing that to her. We were incredibly angry about We are now looking into possible solutions to this. If all else fails, I am going to point out that their policy is going to make me homeless, and then they'll be stuck trying to house a sick person. That'll be fun for them (and a lot more expensive than helping me with council tax). Especially when we ring them sixteen times to reiterate this point. So, we'll see what happens there.

Today it is still cold. Whitby has popped his little head out for food a couple of times, but is mostly asleep. I am worried that it's too cold for him. We're trying to keep the house really warm, but it's just freezing. Hmm. The Girl has gone to the doctor's to get her ridiculously fast heartbeat checked out. Her trainer noticed it at the gym the other day. Later we will make more phone calls to the council and lovely!doctor and the jobcentre and probably the council again. Just as soon as I can persuade myself that I am capable of talking on the phone. Then I'll finish the letter to my MP that I've been working on. It's going to be a really, really good letter.

Next week, The Girl goes away to visit her family. Note to self: try not to get locked out then.

Saturday, January 20, 2007

The Girl OR you don't have to be ill to suffer from chronic illness

P365, 19th Jan (I'm losing track of what number day I'm on now): The Girl proudly stands next to the coat stand that she put together herself, after going all the way to Oxford to collect it so that she could save the £10 delivery charge... Sadly, although my new XDA Mini S is fantastic and makes me incredibly happy, its camera does not seem as good as the one on my last mobile phone. I shall have to start carrying my real camera around with me again. The XDA is marvellous in every other way, though. I particularly love having my calendar, notes and Word documents all in one place. Now I just have to start remembering that they're there.

But I digress. Back to The Girl. She's wonderful, you know. (Nearly as wonderful as my XDA. *serious nod*)

Today we managed to have about a week's worth of stress in four hours. Her fantastic attempts to help me, by finding out information for me about the hospital to which I'm being referred for ME testing/treatment, were met by me having a helpful panic attack. I'm nice and rational like that. Then we went out for breakfast, got annoyed with each other and came home again without actually ordering any food. I half-collapsed on the way back, threatened to run off and stay with my dad, shouted and cried, and went to bed.

Where The Girl, without a single complaining word, brought me sausages, eggs and buttered crumpets.

I think it must be just as hard to be taking care of someone with a chronic illness as it is to be the person who has it. Maybe it's harder. I don't know, as I've never been on the caring side of things in this situation, but it certainly seems like The Girl puts up with a hell of a lot. Not only does she have a lot of the same stresses as I do - the 'will this ever end' stress, the 'how do we get to the shops this morning' stress, the 'why are doctors so crap' stress, the 'Nay's in pain and it's making her ridiculously cranky' stress... But she also has lots of other stresses, like having to make my meals, bring me tea when I can't carry things, clean up whatever I've spilled on the floor this time, sort me out when I'm in floods of tears, drive me places, sit through doctors' appts with me, help me get out of the shower when I'm worried I might fall, make all the little decisions when I'm too tired or cranky to choose what to have to eat or which DVD to watch, keep the house tidy when I'm not well enough to clean, push me around in the wheelchair when I haven't got the strength to walk very far, etc, etc, etc, etc...

Things are fairly simple for me, really, at the moment. I'm sitting around, taking things for the pain, waiting for appointments and seeing what happens next. It's not easy, but I'm dealing with it. The Girl, though, has to deal with all the fallout from all that AND get on with her own life (this afternoon she's off sorting out Production Week on the show that she's directing). It must be extremely stressful. No wonder we're getting a bit annoyed with each other. I'd like to be able to give her some kind of break, but my only choice is going somewhere like to stay with one of my parents, and that wouldn't be particularly pleasant. Hmm. This must be given some thought.

Anyway. I'd like to take this opportunity to thank her for everything she's doing for me. I can't do much else right now, but I can do that.

In other thoughts, I went to book group with former colleagues last night. It was fun: we had some good discussion, and it was nice to see them again. One woman, though, whose sister has ME, now seems determined to 'help' me. She's left a message on my voicemail saying that she's got the number of her sister's dietician, that she wants to give it to me so that I can go and see the dietician, and that her sister thinks I can "recover completely" from my illness(es) because I'm so young. Now, of course I appreciate the positive thoughts, and it's nice of her to want to help. But how do I tell her, graciously, that I really don't want to do *anything* that people 'recommend' just yet, until I have diagnoses and a treatment plan from my own practitioners? Yes, at some point it might be useful to talk about diet - but I will probably get that and more from the ME treament programme I'm soon to be going into, after I've had tests and been properly diagnosed. I don't want to mess with anything right now, while I'm waiting for that. Especially since this dietician thinks changes in diet can cure anything, and I just don't believe that (I think it can help a great deal, but it's by no means the only thing, especially when you have more than one complex condition with a range of possible specific causes), and I don't want to meet with anyone who will cause me more frustration and stress than I need right now. Any thoughts on kindly turning down this lovely woman's kind but overly pushy suggestion, anyone?

Friday, January 19, 2007

When Things go Right...

I am becoming such a big fan of lovely!doctor (aka new private GP). He takes me really seriously, explains things, spends a lot of time with me and is generally marvellous. He draws these fantastic little charts and diagrams, which I love because it's exactly the sort of thing I do on the board in the classroom :) Today he drew me a tiny picture of the brain to explain how paracetamol works on a different area from codeine, which I found ridiculously exciting. Anyway, things have been getting more difficult and more painful recently, and codeine has been doing nothing for me, so I went to ask about pain management as well as to chase up referrals. Lovely!doctor actually listened to this, and now I have Tramacet (which is sort of a stronger relative of codeine with generally fewer side effects). Compare this with the NHS doctor who just told me to keep taking the codeine at a lower dose... Unless it's for benefits stuff or emergency prescriptions, I am just going to avoid my NHS GP entirely from now on. Grr.

The really good news is that I am finally getting a referral to a fibromyalgia specialist. The plan was that I would see a CFS specialist first, but the wait is long (even privately - I dread to think what the NHS waiting list is like). So I asked if I could see the fibromyalgia specialist now. And amazingly, lovely!doctor had already decided to refer me to exactly the person that an online friend recently recommended to me. This only increases my confidence about lovely!doctor, because he clearly knows which specialists to refer to. I'm going to ring the specialist on Monday, once the referral is through, and get my appointment. With any luck, it will be soon.

Of course, I am now getting nervous that he won't find fibromyalgia, meaning that I will have to go through more and more testing to find out what's wrong. (Lovely!doctor mentioned connective tissue disorders for the first time today, which is something that has been lurking at the back of my mind for a little while.) But I am hopeful, because I know my symptoms well, and if I can finally get a diagnosis of something then it will be a huge weight off my mind.

It's good to know that CFS referrals are being processed, too, and that I will eventually get treatment for that. Apparently, the CFS expert that I'm being referred to is a big fan of CBT. I'm up for that, if it helps me cope with pain, but I hope that's not the *only* thing they offer. I really think that things like physiotherapy would be helpful. Well, we shall see. At least stuff is happening. At last!

Tuesday, January 16, 2007

The NHS: I just don't understand...

There really are no words to express how wrong the treatment is that many people receive at the hands of the NHS. I know that they're underfunded, incredibly busy and, for the most part, doing their very best to help more people than they can cope with. However. I am getting so sick of the way that they operate. I blame the government, not the individuals who are trying to do a difficult job. Regardless of the cause, though, it is not good enough.

Today I had an appointment at the hearing clinic. I had an MRI in December to check if there might be anything causing my minor hearing loss, and I had to go into the clinic to get my results. My appointment was at 1.20pm, but reception didn't even bother to open until 1.45. I was finally seen at 2pm, even though I was the first patient of the afternoon. The receptionist was incredibly rude, refusing to write down my GP's details because he's private, and making me stand for five minutes even though I was clearly in pain (one minute of standing is about my limit at the moment). Then when I finally got to see the doctor, after my forty-minute wait, it turned out to be a three-minute thing where they told me that my MRI results were fine and that I don't need to come back again. Sorry, but couldn't they have told me that via my GP or over the phone? Why did I have to leave the house for three hours (when it's currently very difficult for me to do that), do a fair bit of walking, get on the tube, drag myself to a central London hospital, have them keep me waiting even though there was no one in the queue ahead of me, and then get sent away again? As I said to The Girl, if I was getting this sort of treatment from a company that I was directly paying for a service, I'd have put in a serious complaint long ago.

What I find most interesting about the NHS at the moment, though, is its apparent lack of disability equality policies. The clinic today was ENT, yet they seemed to have absolutely no deaf awareness. The receptionist was calling out names (not particularly clearly) while her mouth was hidden behind a file, then getting annoyed at people who didn't respond immediately. Um, did it not occur to her that some patients at an ENT clinic could be, oh, I don't know, hearing impaired? There was no accessible equipment to help people who can't hear - even my ordinary GP surgery has a display showing the name of the patient being called, but there was nothing like that here. I also heard one member of staff being extremely rude to someone because he wasn't understanding what was being said quickly enough.

This all seemed very odd to me. Yet it's not outside my experience. As an already-disabled person (impairment: bipolar disorder) who has also developed a physical condition, I have been given what I consider to be discriminatory medical treatment. I already knew that people with mental health problems tend to experience poor medical treatment for other conditions, because doctors either don't believe them, or dangerously assume that every condition they experience must be related to their psychiatric impairment. Granted, conditions like ME/CFS and fibromyalgia are a particular problem here, because they are difficult to diagnose and it's not entirely clear what causes them. Nonetheless, I have had a diagnosis for over a year, of a condition that has been classified by the WHO as neurological. Yet I have faced serious difficulties in getting pain treatment, in persuading a doctor to refer me to specialists, even in getting prescriptions for medication that I have been taking for many years. All of this delay and disbelief has not only affected my condition directly, in that it hasn't been treated properly, but also indirectly. If I had been taken seriously and given proper care and advice from the beginning, it's quite possible that I wouldn't have pushed myself to go back to work as quickly as I did, and that I would have known how to approach this condition better. Perhaps I wouldn't have become so ill then. I'd certainly be bothering doctors a lot less by now. Joined-up thinking, anybody?

I am beginning to wonder, in short, whether someone's quality of life matters to doctors once they are already disabled. I'm sure that on a conscious level it does. But it's quite possible that doctors - without meaning to - take disabled people less seriously, or approach us with less urgency. Maybe because we're less likely to 'fight our corner', or because they think we can cope with more because we already deal with impairment, or because they just don't know quite what to do with us when conditions start to overlap and get complicated. If doctors and health professionals would only see us as individuals rather than problems, things might improve.

I wonder if any campaigns are currently working to persuade the medical profession to consider disability in the light of the social model. Hmm.

Monday, January 15, 2007

Tough Day

No picture today. Haven't had the energy. Today has been a difficult one, in various ways. I've been suffering from the unremitting, painfully loud building noise that's been coming from next door's garden for the past six weeks - we're trying to work out possible solutions to that, but in the meantime it has made me anxious as hell today. Every time I started to relax, the noise started up... One of the fun minor issues with this illness is serious noise intolerance - it makes me want to kill people, or at least myself. Nice. Ended up walking to the high street despite being in a lot of pain, because I had to get out of the house. Sat in a cafe and felt a bit folorn over cheesecake.

Then I've been freezing cold all day, but a hot bath made my muscles painfully twitchy. I was too tired even to get dressed until 2pm. Of course, this made me feel horrendously lazy and I spent half the day doing my "you're fine, you silly bitch" routine to myself. I spend a fair amount of my time thinking I'm making this up. And then I do something, or walk somewhere, and the pain and other weird symptoms take over again and I realise that I should be taking myself a little bit more seriously.

I've been talking to The Girl about maybe trying to find a counsellor who knows about long term illness. I am tired, depressed, frustrated and unhappy, and I need to be bothering someone other than The Girl about this. I don't know how to go about finding someone like this, of course. Anyone reading this who has any ideas, do leave a comment!

Might as well go to bed now.


Sunday, January 14, 2007

P365 Day Twelve - My Desk, and My Life

Today's photo features the peel from an orange I just ate, my new Logitech mouse which has turned websurfing into an exciting and completely pain-free experience, and the pile of books that is making me feel nostalgic for work. Hmm. You can also see a painting that my sister did for me, my overflowing bin and, if you look closely, The Plan up on my wall. I'm getting through it. Achieved: new GP found, applications made for benefits (half-done, more left to apply for), notice handed in at work, The Girl has requested a carer's assessment from social services, I'm on better pain medication and referrals to specialists are forthcoming.

I meant to take a picture of my church today. I really do leave the house occasionally, but I always forget to take pictures (mostly I'm too busy adjusting to the scary outdoorsiness and putting one foot in front of the other). I did one thing yesterday - met with YLGC people for coffee - and one thing today - church followed by lunch with a couple of churchy-type people. Each time, I got incredibly tired out. I also feel very dull and slow because of brain fog, so I think that, for now, I need to stick to socialising with people who know me really well and won't look at me like I'm crazy when I have to ask them to open my can of diet coke for me because my hands won't work.

I have been feeling really down recently. Not just anxious - more 'life is shit'-type down. Which is better than real clinical depression, but also isn't much fun. I'm worried about how long I'm going to be ill, as well as about whether my life has any purpose if it involves nothing more than watching TV, chatting online and occasionally reading when my brain can cope with that. I have built my life, goals and ambitions around my career. What do you do when that's gone, at least for the time being? Who am I now?

Thursday, January 11, 2007

In which things maybe start to move forward, just a little bit.

P365 Day Nine: Paints!

Because I have half-decent pain medication at last, I have been relatively productive for the past couple of days. The story of How I Found That Very Rare Specimen: A Good Doctor is at the livejournal. Thanks to lovely codeine, I was able to spend yesterday evening at Former Flatmate's place eating Chinese and watching crap TV and chatting, which was fantastic. She got me the above present, a box of very exciting watercolours, which I am going to enjoy. She is generally very fab and it was great to see her.

Then today, once I managed to wake up and get home, I did some useful things. First, I e-mailed my boss to give her my notice, informally. She was very disappointed but lovely about it. She is willing to take me back for part-time agency work at any time, and would like me to do some moderation for them in the summer too, for one-off payment. I said I'd see what my situation was by then. Very good of her, anyway. Then I applied for Disability Living Allowance (goodness, that's a complicated form, and apparently almost everyone gets rejected, but then more people are accepted on appeal). Then I applied for a Freedom Pass for the tube. Then I rang up about a blue badge form. If I got one or some of those things, it would be hugely helpful. The aim is to start relying on The Girl a little bit less. The poor thing is having to push me around in a wheelchair when I want to go out. Although she says she doesn't mind because it burns calories for her. :D

People I am currently very grateful to:
- Lisy, of Lisy Babe's Blog fame, for giving me excellent advice and a push towards applying for things. It was really good of her to come over.
- Aforementioned Former Flatmate: her paints, wine and listening skills.
- My friend S who got me microwaveable slippers. You can't do better than that. Toasty feet!
- My boss, for being lovely and sweet when I was worried she might be angry.
- The fabulous people at my new church, who are encouraging and invite me over for drinks after Bible studies.
- Everyone on MSN/AIM/e-mail who has been letting me whine and whine and whine over the past few weeks. You're all wonderful.

If I've missed anyone, I'm sorry. You are appreciated, but brain is foggy. :)

Monday, January 08, 2007

P365 Day Six - In which our neighbours complain

The TV. Now with subtitles. Because according to our neighbours, our deafness (both The Girl and I can't hear all that brilliantly) is not exactly a public service. Oops. I suddenly sympathise with my father for the 10+ years we spent telling him that THAT TV IS TOO LOUD. NO, LOUD. NO, LOUD. NO... never mind.

I have an appointment with a private GP on Wednesday. This is after we spent about an hour ringing around, and around, and around to see if we could find a new NHS practice that would take us, and it was starting to look so difficult that we got completely despondent and exhausted. And then we heard about someone who has just found out that his rheumatology appointment is Sept 2007. And we said "fuck that, we're going private." If only we can get some advice on what the hell we should be doing while we wait around for that NHS referral, it would be something - but I might fit in one more consultation while I still have a HealthSure plan, before I leave my job. 'Cause, you know, a diagnosis and maybe some pain treatment would be a nice thing to have. If it's not too much trouble, of course.

I had coffee with the vicar today. He is wicked cool and we talked theology. I also rang my mother and ate chocolate. Tomorrow The Girl and I start a diet and a healthy eating plan, respectively, so I'm now ordering a pizza for dinner before I never get to do so again.

Project 365 days that I don't comment on here can be found at Flickr. They are, indeed, mostly of the living room. (This does not mean that The Girl is right. In no way.)

Saturday, January 06, 2007

P365 Day Four - my life in picture

When I started this 'my life in pictures' thing, The Girl told me that all my photos would be of my bed, and I glared at her. She was wrong, of course. They are all of the living room...

So this is my life right now. Sofa, because I'm on that all day - and thank goodness it's comfy. Electric heat pad for cold and pain - I *love* this! Stick (pretty colour). A whole mess of stuff on the table, from pills to books, that saves me having to go too far. The computer on my desk right in the corner - you can't see the TV 'cause that's on the other side of the room, but if I could have fitted it in, I would have tried! Blanket - fluffy and fleecy and makes me cheery. The bag that I'm living out of because it's easy to put it onto my back to carry things around. Hot water bottle. Biscuits and old cups of tea. And finally, the towels soaking up the water from the huge jug that I just dropped on the floor, because utter lack of co-ordination is a bitch. Fortunately The Girl was there to run off and get me towels. She is a sweetie. She's also home again, at last. (When she got in, she said "How are you living here??" Apparently it's the messiest she's ever seen it.)

And today, because I was awake for most of the night worrying about what to do with my situation, we began to make The Plan. It's detailed. It's also multi-coloured and has four columns. A photo of that may just follow tomorrow... :D

Friday, January 05, 2007

P365 Day Three - The Girl sends me flowers!

Today's Project 365 photo is dedicated to my wonderful, amazing, funny, gorgeous, slightly obsessive but in an amusing way, adorably sweet Girl.*

I am still fighting with doctors. My current GP has been treating me like crap and refusing to give me a prescription for medication, even though I have clearly given plenty of evidence that I have been taking it for ten years. She doesn't approve of it for people with bipolar disorder. Or something. Today, after a week of repeatedly asking her to get in touch with my previous GP, she finally passed on the message that she would give it to me "just this once" (she wouldn't speak to me herself). Patronising idiot. I nearly screamed at the receptionist who deigned to tell me.

So. We (that is, The Girl and I) have decided that we are going to stop putting up with this crap. We are forming The Plan. I am determined - determined I say! - to get bloody well taken seriously. Oh yes.

So, here's part one of The Plan, although it is still in the embryonic planning stages**. We are going to dump this GP practice, as soon as I get my "just this once" medication, and we are going elsewhere. When we do, bipolar bloody disorder will not come up, as it is clearly doing me more harm than good to have that on my records at the moment. In a few weeks the records will turn up and it'll be added to my list, as is only healthy. In the meantime, I will have been acting like I know nothing about it. Hey, it's quite possible that they never told me - and I'm very forgetful these days... By the time the records do turn up, I hope that I will have developed a more positive working relationship with a doctor who maybe even takes me seriously, and who with any luck doesn't think that all of this is in my mind. (There are some doctors like that. I've even met one or two of them.) After all, I only hinted at the bipolar thing with the rheumatologist, who took me seriously and treated me like someone with an actual physical problem.

Other stages of The Plan involve setting exact dates by which I will give up waiting, swallow my pride and go private. Also, I will be making decisions in advance about what to do in worst-case scenarios. The Girl, meanwhile, is looking into carers' services. And today I got a call from the Red Cross people, who have a wheelchair for me to borrow for a few weeks. Stuff is, very slowly and with any luck, maybe beginning to move forward.

*Please insert complusory *bleugh* sound after this moment of soppiness, in case I start seeming like I'm going soft in my old age.

**Soon there will be flowcharts. And diagrams. And different coloured fonts. And it will be on A2 paper and pinned up on my wall. Oh yes. (I would laugh evilly, but I might get sectioned.)

Wednesday, January 03, 2007

Project 365

So this is why I need to do the 365 thing. I used to be obsessively tidy...

In an effort to achieve something positive and creative in 2007 (and to remember and appreciate more 'moments'), I am doing Project 365 this year. I'll post a photo a day on Flickr, accompanied by a brief comment. If this makes me think interesting thoughts, I'll blog them, along with the photo. If not, the pictures will be on my Flickr page.

So at least I've done something today! I also talked to the local Red Cross branch about hiring a wheelchair (I want to see if it actually helps me before I look for a more permanent solution), signed up for more information from a couple of home tutoring agencies, and went out for a pint of milk. See? I can achieve things. Tomorrow I might even read my book.

I am watching Captain Jack dancing in the Torchwood finale. For the second time. It's amazing what makes me happy. :)

I was inspired to do the 365 thing by Boo (aka Cats/lumin). Yay for Boo!

Monday, January 01, 2007

That was the year that I partly wasted lying around, and partly ruined by not resting enough. It was also the year of some very, very good things.

I've been doing the 'review of the year via first lines of first posts of the month' thing on my livejournal. It's just a fun little thing. And yet, reading back over various posts from 2006 has made me think about how much has changed this year - not to mention how much has stayed the same.

This is the year that I moved in with my Girl. This is something that, only a few years ago, I could never have imagined happening - and now I can't imagine what life would be like without her. I was never going to settle down, and certainly not in a *gasp*! same-sex relationship, these being concepts that offended both my warped sense of morality and my self-centred need for independence. Neither of these, it turns out, are important when you work out who you are, meet someone who makes you incredibly happy, and decide that life together is better than life apart. She has been nothing short of my guardian angel this year. More of that in 2007, I hope!

This is the year that I gave up a job, found a better one, and am now probably giving that one up again. Being ill has, finally and after a lot of struggle, given me a better sense of proportion about work and careers. Yes, I put a lot of effort into becoming a teacher, and I love it and don't want to lose that part of my life. No, it is not my only source of self-worth. There are more important things, and I plan to focus on those for a while, before (I hope) returning to some level of work as a much better teacher (or other kind of professional), thanks to having gained different kinds of experience that will not go to waste.

Because, of course, this is the year that I got sick. I am getting better at admitting that (I used to see illness as a sign of weakness or an indication that I was just malingering), and I hope I will continue to get better at dealing with it. I am learning to acccept help when it's offered, mostly because I can't do much else at the moment, but also because The Girl is so good at offering it without letting me lose my independence. I am learning that I don't have to be the busiest, or the best, or the most active, or the highest achiever all the time. Most important of all, I hope that I am learning to slow down and see that every experience is important, valuable and worthwhile, whether that's sitting on the sofa with The Girl and watching stupid American sitcoms because my body refuses to let me do anything more active than that, or doing something that I would previously have seen as more 'useful', like practising for sign language classes, writing a letter or cleaning the house.

Right now, I'm sitting in my room in the chalet, in the French Alps, that belongs to The Girl's parents. I'm watching the snow fall, enjoying the quiet (and the central heating), waiting for the latest dose of painkillers to take effect so that I can go downstairs and be my happy cheery bouncy usual self again. It's been a good half-hour. I hope I can appreciate the next one just as much. I may be taking 2007 'an hour at a time' (excellent advice that my mother gave me when I was 17 and first ill with what was much later diagnosed as bipolar disorder). And every hour will be worthwhile.

My resolutions:
1. Get over my terrible procrastination habit (it's not quite laziness, but it is sometimes about feeling a bit more sorry for myself than I need to) by breaking tasks down into smaller ones that I can handle, and working on doing just as much as I can manage.

2. Start painting again! I'm a bit crap at it, but I enjoy it, and it's fairly mindless fun that doesn't take up too much energy.

3. Start getting a little bit of exercise again, once I'm able to - I miss swimming and walking, and it can be just a few lengths/around the block.

4. Join a CFS support group. I've already started looking into this.

5. Stop being so bloody anxious all the time, by a) writing stuff down, b) giving myself a few minutes every day to worry and no more than that, c) being honest, especially with The Girl, and d) letting God take care of the things I can't.

Happy New Year, all.