Thursday, December 28, 2006

Little successes... and little cities

The Girl got me New York In A Box. Hee.

As nice as it is when a doctor takes your situation seriously, occasionally they can take you a bit too seriously. The GP today who refused to give me my antidepressants because "we don't give those to people with bipolar disorder," despite my assurances that not only have I been taking them for years (on and off), my psychiatrist also recommended that I be given control of that medication and choose when I want to take it. She has insisted on ringing my previous GP so that she can get a copy of the letter from aforementioned psychiatrist. Which is amusing, given that a) I stopped seeing him over a year ago, b) he proclaimed me practically recovered from the bipolar thing, and c) if she tries to get hold of him, he probably won't even remember me. Heh. So, I have no antidepressants! The Girl thinks that this GP is one of those doctors who doesn't like to give medication out for mental health problems. Which is good in principle - but it does mean that I get lumped in with everyone else, when I am used to being in charge of my condition and its treatment (as regards the bipolar thing, I mean). It's been a long time since I was refused medication for anything. It was quite funny. It won't be when I run out, though, and the anxiety comes back with a vengeance, so she'd better ring the old GP pronto.

Anyway, this GP was quite nice. I was very glad that I'd brought The Girl into the doctor's office with me, as I got a classic case of the fibromyalgia 'brain fog' and forgot what I'd gone in for as soon as I sat down. The Girl reminded me that I was there because I am unable to go back to work on Wednesday, given that I often can't hold a cup of tea or get up stairs, and therefore need signing off. The doctor signed me off for a month. I mentioned the possibility of leaving work, and she did not seem to be against this idea, clearly thinking that I shouldn't be working at the moment. Which was reassuring. I keep thinking, in my usual way, that this is all in my head. I need a lot of reassurance that it isn't. I'm hugely relieved that I don't have to attempt to go back to work straight away. That would not have been pretty.

So then we went down to the Citizens Advice Bureau, who seemed confused and sent me to the jobcentre. So then we went to the jobcentre, where they were less confused, but told me not to give up work as "your union can help you." Not with my bloody job, they can't - but that's hard to explain unless you know about education, and about my sector in particular. Nonetheless, they say that if I do decide to give up work, I can apply for incapacity benefit in the short term. I wouldn't want it for longer than a couple of months, as I plan to be working part-time again as soon as possible. I am not keen on the idea of living on benefits for any longer than I have to. Plus, I'm already bored out of my tiny mind, and I miss teaching like crazy. I keep looking forlornly at the books I've been doing with my classes, and wishing I had the energy and concentration to prepare some lessons. Freaky.

And now I'm exhausted, as we did too much walking. Our new area is great, though. We've got a big high street quite nearby, with its very helpful jobcentres and doctors' surgeries and cafes for cooked breakfasts, and then a bit closer we've got a little suburb with train/tube links, and a major A-road just a few minutes' walk in the other direction with supermarkets and some interesting little shops. It's a shame I haven't really been up to exploring since we've moved here. I will have to do some when I start increasing my exercise.

Wednesday, December 27, 2006

Seasonal cheer, and all that. Also: advice needed.

So. I met The Girl at the airport on her return from Israel on Christmas Eve. She was not too much delayed, despite all the freezing fog, and we got straight on the road to my dad's. The journey to Darkest Hampshire felt very long (but I think it was only a couple of hours), and on arrival I had a bit of a funny turn, thanks to all the pressure on my painful joints, collapsing on the sofa for the rest of the afternoon. My Dad and his lovely partner were very nice about it all, though, and gave us cups of tea and lovely food. When I had perked up a bit, we went to Midnight Mass at a local church. This turned out to be a very odd combination of high church and evangelical, meaning that we got all the ritual and a long, dull sermon, and it finally finished at about 12.45am. This is too late for any midnight service to end. Hmph. I think The Girl enjoyed bits of it, although she's never keen on services with too much "Jesus stuff", and that's kind of central at Christmas. I left feeling all cheery and redeemed, though. :D

Christmas Day was much fun. The dad and the lovely partner put on a marvellous spread, and The Girl enjoyed her first Christmas, especially the old tube maps I got her (one is from 1913 - I am very impressive), as well as the Bill Bailey DVD and linguistics book and other cool stuff. I slept through most of the day - kept having to go back to bed. My slightly weakened state prompted some long, tortuous conversations about work and the future, the conclusions to which I shall outline in a moment. I missed all the good TV, including Narnia and Doctor Who, getting up just in time for some more food. Then we went to bed properly and did some more sleeping.

Yesterday being Boxing Day, we left early to get to the sister and the brother-in-law's place. The mother and her silent-but-nice partner joined us there a bit later. More conversations about my slightly weakened state. More food. Everyone liked the presents we had got them. I was given the new Killers CD and some other impressive stuff. My mother intended to give us Habitat vouchers too, but they got lost somewhere. She thinks she may have thrown them out. This is typical mother and rather amusing. We said not to worry, but she is determined to replace them. We had a lot of conversations that started off being about me and changed to being about her within about five seconds. The Girl hasn't really seen this first hand before, and was apparently wondering why I didn't tell my mother that I was in the middle of saying something. I explained how I have learned that this takes more energy than it's worth. Then the brother-in-law's sister arrived with her utterly beautiful baby girl. I have never enjoyed holding a baby before. I wouldn't give her to anyone else for quite a while. She is completely amazing, and so good. I don't want one, though. No no. Nope. (The Girl was so pleased that she said "I may never see this again" and took pictures of me with baby. Hmm...)

So. It's been a long three days. I'm fairly sure that I'm quite rapidly deteriorating rather than improving. There is a lot of pain, not enough energy to get up stairs or do car journeys or finish dinners, I am barely sleeping at night, and the muscles in various bits of me (including, irritatingly, my hands) have almost given up altogether. This, put together with various short-but-pointed bits of advice from doctors and other good people, including family and The Girl, who can see what things are like for me at the moment, has led to the following conclusion: I think I'm giving up my job. It seems like an utterly ridiculous thing to do, being such a fantastic job, and given how much I love teaching, but it's fucking well killing me at the moment. When I got this job in the summer, and realised how great the conditions were, and what my classes would involve, and indeed when I saw my first payslip, I expressly told The Girl never to let me leave it. However, it's clear that I'm looking at a timescale of at least a year until I'm properly better, maybe more. If I go back to work, even doing the four days a week that they've suggested, there will be no energy left to do anything else, including to take care of myself. This will not only affect The Girl (who is already looking after me a lot more than she should be), but my quality of life. And if get worse, which is entirely likely given how hard I work when I'm teaching (usually 50 to 60 fairly intense hours a week), then I could set back my recovery and end up being sick for years. I don't like that idea. Not one bit. Being sick for months is quite long enough already.

I am extremely sad about this, and am feeling more than a bit guilty, despite being happy about the decision I've made (if that makes any sense at all). It is indeed an excellent job, and I'm letting them down by leaving now. But - and here's my other big reason for leaving - I am already letting them down as it is. My students are not being taught properly (some classes are not being taught at all), and I don't think they will be while I'm off sick. If I give proper notice and finish officially, the college will have to find someone to replace me, probably as quickly as possible. This is so much better for them, and for the students, than me phoning in every day and saying I'm having another day (or week, or month) off. There will be a lot more continuity and decent teaching for my classes. I will miss my students so much, which is the most painful thing about all this - but it really is the best thing for them, and for me.

The next question that arises is: what do I do with myself now? This is where I could do with any advice that anyone has. First of all, I have no idea if I can get statutory sick pay if I don't have an employer. Which, given that I'll be signed off for a while yet, would be a useful thing to know. I'm going to see the Citizens Advice Bureau people as soon as they're open again, but anyone who knows anything about this, do feel free to comment or e-mail me. When I'm feeling a bit better, though, I plan to look for part-time work - either tutoring from home, or sessional teaching (which isn't too badly paid), or something else for two or three days a week, or a combination of all three. That will depend on how a) much better I start feeling, b) how quickly that happens, c) how quickly I get physiotherapy etc, and d) what the M.E. specialist says. Money will be extremely tight for a while, but we have savings, and The Girl (who is the most amazing person in all the world yes she is) is completely behind me with this and willing to help wherever she can. My father is also happy to give me a bit of money for a while - which, again, I'd rather not accept, but needs must, and he is very sweet to offer. So I think we'll survive. I could also do with advice on what to do with myself while I'm signed off work, given that it could be for a while, and that I'm not allowed to do part-time work meanwhile. (I currently plan to learn a bit of Hebrew, carry on with sign language and read up on theology.)

Oh, and my final problem is how to persuade my manager - who really likes me and also won't really want to be inconvenienced by having to find a new teacher - that I really do want to leave.

I hope everyone had good Christmases/seasonal breaks.

Cross-posted, and all that, because advice is good.

Saturday, December 23, 2006

WARNING: contains seasonal greetings.

The Nightmare Before Christmas is on! Oh, so good.

I had a little burst of energy this afternoon, so I've wrapped all my presents very beautifully. Now I'm considering whether I can cope with cleaning the flat. I haven't cleaned in about two weeks. I don't think I've ever lived in this much of a mess before. :/

I went into work yesterday for a few hours (and that was exhausting enough) to talk to HR about going back part-time. They want me to go down to four days a week on a temporary basis, on full pay because of sickness. I'm really quite worried about this, as it feels a bit like I'm conning them. I would prefer to go part-time permanently, and be paid for only four days, as I don't think I'm going to be well enough to be full time again until at least the end of the academic year - I have no idea when I'll be better, but from what the doctors are suggesting, it doesn't seem like it will be anytime soon. No one else at work seems to be in favour of this, though, so I suppose I'll see how it goes. I'd rather not to have to worry about it, but there you go.

Tomorrow is both Christmas Eve and the Fourth Sunday in Advent, which very rarely happens, so it's all very exciting (for those of us who love the ritual and ceremony). I shall go to my own church in the morning, then I'm meeting The Girl at the airport and we're off to my dad's in Darkest Hampshire, and then we'll do Midnight Mass at a church near him. Should be fun. Then it's Christmas Day with him and his partner, and then Boxing Day in Reading with the sister, the brother-in-law and the mother (who has reached new heights of panic about my diagnoses - it's almost funny). Mostly, I will be getting bundled up into The Girl's car and driven places, which is fine by me. I am feeling frighteningly festive (ooh, alliteration) this year. This really isn't like me, especially considering current circumstances (there it is again - I'm just a Yuletide poet, me). I'd like to say it's because I've become a cheerier person in the last year, but it may also be the pain medication. :D

And since I may not get to post again before all the crazy travelling starts, Happy Christmas, all! Alternatively, Happy Belated Hanukkah, Merry Yule, Have A Pleasant Winter Festival, or Enjoy Getting-Pissed Day. Take your pick of greeting and have a good 'un.

All this took place to fulfill what the Lord had said through the prophet: "The virgin will be with child and will give birth to a son, and they will call him Immanuel"—which means, "God with us." - Matthew 1:22-23

Thursday, December 21, 2006

Feeling a bit more Christmassy now

Was supposed to have coffee this afternoon with the priest from my new church. But when I got there, they were busy preparing the church for Christmas, so I stayed to help out. (Don't tell The Girl that I left the sofa and did cleaning... oh.) They let me dust the choir stalls! In Heaven I will always get to dust the choir stalls. All day long. Yes indeed.

Anyway, the church looked lovely, so pictures are above. They were taken on my phone, therefore not that clear, but you get the idea. Here's another:

That's the pulpit, where the Word of God is carrying a small present. It got worse - the priest then decorated the statue of Our Lord and His Blessed Mother with baubles. I said this was sacrilegious, but was ignored. Hmph. (I could not get pictures of the Blessed Lady with bauble earrings, alas.)

Had a nice chat to the priest while I was dusting and he was putting up lights. We established that I am from an evangelical background, gay and in a relationship with a non-Christian. His biggest concern out of these three was the evangelical thing. Why, he wanted to know, had I been attending an evangelical church? I said I'd need an awful lot longer if he wanted that question answered. It's an extremely accepting church with regards to the gay thing, and generally very liberal. I knew this before, but it was really nice to see it in practice. It's going to be a lovely relief to be able to talk openly about my life and family. :)

Priest asked me when I'm going to be ordained. I said, "Uh, what?" Apparently he asks everyone and then gauges their reaction. I said I had thought about being a lay reader, very occasionally. He seemed pleased (that the gay girl with evangelical leanings who has appeared in his church out of nowhere and started complaining about baubles on the Virgin Mary might want to learn how to preach in his church). Then we all got fits of giggles for the last hour, and I transmogrified into Old Churchy Lady and started moaning about how badly the brass had been polished and did it again myself, while everyone else sat around staring at the hypnotic lights (see above). It's a strange church. I'm going to fit right in.

In entirely unrelated news, I have an electric heating pad! This is hugely exciting. And good, as I have been unbelievably tired since coming back from church. An hour of very light cleaning has used up all my spoons*. I am concerned about going back to work, to say the least. I'm trying it out tomorrow morning. It's only a half day and then they close the college, plus no one will be around as it's the holidays for students, so it's a good time to try and sort out my big pile of admin. I also need to talk to Human Resources about my job, and whether they can make reasonable adjustments. Hmm...

*For an explanation of the 'spoon' reference, you might be interested to check out The Spoon Theory. It has been keeping me (relatively) sane over the past few months.

Monday, December 18, 2006

A multi-faith weekend: Third Sunday in Advent and Second Night of Hanukkah

So, first there was Saturday, and it was the second night of Hanukkah, and we lit some candles. See pictures. Neither The Girl nor I are great at taking photos (although I'm sure you can guess which one I took, given that it's all blurry and you can't even see the menorah). The first one is clearer, through the joys of flash photography, but I like that you can see the lit-up Christmas tree in the other one. :)

Then yesterday was the Third Sunday in Advent. I really like my excitingly new, Anglo-Catholic church. The priest and I are going to have coffee sometime. The third candle on the Advent ring is for John the Baptist. He was a good guy. In response to which: May God bless all the prophets of - and on the edges of - today's Church, especially the ones who call us out of our comfort zones of easy belief or faith without actions.

But even after all that I still hadn't had enough religion, so I went to the annual LGCM carol service. It was nice, although lacking - something. Maybe I was too achy and tired to enjoy it properly. I am not exactly getting into the Christmas spirit at the moment. And really, why should I be? No, I am not happy about particular aspects of life at the moment (as much as I am aware of how blessed I am). I won't pretend differently just to make people feel better. I don't think there's anything wrong, anything 'sinful', about admitting that I'm stressed out, tired, in pain and generally sick of being sick. It's Advent, you see, a time of year that has always struck a chord with me, and it's about so much more than counting the days and putting up the decorations. It's about waiting, listening, wondering. Expecting hope - whether it arrives or not.

Although, with God, it always does.

"I am the Lord's servant," Mary answered. "May it be to me as you have said." - Luke 1:38

Mary responded,
"Oh, how my soul praises the Lord.
How my spirit rejoices in God my Saviour!
For he took notice of his lowly servant girl,
and from now on all generations will call me blessed.
For the Mighty One is holy,
and he has done great things for me."
- Luke 1:46-49

Friday, December 15, 2006

Another week of sitting around the house...

My biggest problem this week has been pain. Too much of it to do much of anything. The Girl and I have watched a lot of Angel (seasons three and four), and in her absence I've been working my way through the entire 10 seasons of Friends. Talking of which, I'm missing a couple of seasons of that - must get them. I love with all my heart and soul.

Messages from work began causing me stress around Wednesday, so I started ignoring them completely. That's been helpful.

I have to see a new GP today, which should be interesting. I saw the nurse yesterday to register with the practice, and she clearly had no idea what ME is. All she would add to my records was 'symptom - fatigue', which gave me great amusement (and frustration, since I now have to correct that mistake with the GP before they start telling me it's all in my head). Oh, but she was happy to note that I have bipolar disorder. Of course. *bangs head on desk repeatedly. but softly* Fortunately, I have copies of the letters from my old GP and the rheumatologist that they gave me to help explain things at work. Ah, now the OCD comes into its own. My compulsive habit of making copies of everything that 'might come in useful one day' is suddenly a good thing. Yes! (Admittedly, that trait is less useful when it comes to hording five hundred plastic bags behind my bed. But it has its good points.)

The irony of the NHS continues. The best way to make an appointment with the doctor is to go to the surgery (fifteen minutes from my house, at my current walking 'speed'). The phone lines don't open until half an hour after the surgery, presumably to encourage people to come in person. By the time I can phone, I will have missed most of the appointments for the day. My problem with this system? This is no good for actual SICK PEOPLE. I can't get there, and back home, and back again for my appointment without ending up in bed for the rest of the day. Clever stuff, people.

Today I want to cook, vacuum, change the bed sheets, clean the bathrooms, go to the doctor and sleep. Now we'll see if I achieve any of that, or just end up watching rubbish on TV all day...

Friday, December 08, 2006

One hell of a week

Well. This week I've gone from being very tired, to being in a lot of pain, to being unable to walk up the steps between my lounge and the hallway, to being unable to hold a cup of tea, and back to being exhausted again. I need to go back to work on Monday, which is worrying me, but I'm going to talk to HR and only do the absolutely minimum - only teaching, as little admin as possible - if I can arrange that.

On Wednesday I finally got to see a GP who took me seriously. He was a little bit appalled that I hadn't been sent to specialists yet, and got me a very quick referral. Then yesterday I went to see the rheumatologist, who was really excellent. He thinks it's very likely that I have CFS/ME, although it could be fibromyalgia - apparently they are very similar. He took me very seriously. He also took The Girl seriously, and treated her like someone who knows my condition better than I do, which was actually very useful! I'm being referred on to some helpful people, hopefully including physiotherapy and other specialists. He was very matter-of-fact, in the way of one who knows intellectually what an illness is like but hasn't thought too much about what the experience is, but then that's doctors for you. He wasn't great on the subject of how to manage the condition, though. He gave me some advice that conflicts worryingly with every other bit of advice that I've had about this problem (he said I can't do any damage to myself so I can pretty much keep going as normal, whereas I've been told by other doctors that I could make myself very ill if I don't rest, and that's just what has happened to some friends of mine with ME, so I'm wary). So we're waiting to make any changes until I see the consultant he's referring me to, who apparently is an expert on CFS and similar things. He thinks I can get to see her quite quickly, so that's encouraging. I want to know exactly what I need to do to get better, and then I will do that. The best thing about it all is that he's referring me to himself under the NHS, so that I can immediately get NHS treatment for the long-term things that I'll need. I think he quite quickly realised that I couldn't pay for many private appointments, and that I'd rather not, too (for ethical reasons). He was very good about this. So, I've sort of 'skipped the queue' with regards to getting treatment, but if I hadn't then there could have been some painful and frustrating months of waiting. I can just about live with the way I've approached it.

The Girl has been utterly amazing over the past three weeks. There've been times this week when I couldn't hold a cup of tea, and she's been doing absolutely everything from cooking the dinner to going out to get me chocolate biscuits to moving the TV into the bedroom and back into the lounge again. And she doesn't seem to mind in the least. She is fantastic.


As for news that falls into the category of 'the world is a crazy place', The Girl's father has invited me to join them for their New Year celebrations. In France. With their entire family. And various family friends. You should have seen The Girl's face. She gave up frying the dinner altogether, and just stood in the middle of the kitchen looking utterly terrified. I think she thought her father had completely lost his mind. Which it's quite possible he has. I am bemused. But pleased.

Monday, December 04, 2006

On food, and other things. But mostly food.

I have eaten so much crap today. Which, given that I'm really trying to avoid sugar and wheat in an effort to improve my energy levels, is not good. On the other hand, I have enjoyed a very lovely mini strawberry cheesecake and Findus Crispy Pancakes! which are a massive favourite from childhood. With potato waffles. Mmm, waffles. I will now have a cup of delicious tea...

...OK, so there's not been that much except food to keep my attention today. I was off sick again (they are being really nice about it in my team, although the HR people want to see me - gulp) so I didn't have much to entertain me. The Girl drove me around on various errands that she was doing and I sat in the car and did Sudoku. I'm at the too-tired-to-read stage. Maybe this time I'll get past the 'medium' Sudokus and into the 'difficult' ones. That would be an achievement, yes it would.

Yesterday I was too tired to go to church, which was a slight irritation in an otherwise very nice day. (We watched a film, and The Girl's brother came over for tea and chocolate biscuits. Yep, I'm still food-obsessed.) I really want to find a church. I went to a lovely, tiny little local one last week, but I'm not sure it was quite right for me. I need to try a couple more. There's a scary 'church plant' (you can think Day Of The Triffids if you like) of Holy Trinity Brompton just up the road from us. I couldn't go there too often, as they might try to ensare me (and probably make an attempt at curing me of homosexuality, haha), but it would be nice for the occasions when I was in need of a good dose of evangelicalism. Which happens more than you'd imagine. Mostly, though, I think I want to be an Anglo-Catholic. Yay for the moderate-to-liberal middle ground, as well as all that lovely tradition. I wanted to see the first candle of the Advent ring being lit yesterday. The first one is for the Patriarchs - or the people of God, depending on your church/tradition. So: May God bless wise leaders, and make them wiser.

In other interesting stuff, The Girl has been reading back over my livejournal (my friends-only blog) to see exactly when I first got ill, and exactly what my symptoms were at the beginning. It turns out that this did indeed begin with one virus, a year ago, and that I've had most of my symptoms from the very start of things. At the time, I thought some of them were withdrawal, since I was coming off some medication. It turns out I was wrong. This could be good ammunition if I ever get referrals (roll on Wednesday when I get test results), so we'll see.

I now make tea and finish laundry, then get lots of sleep. I need to be at least at work for the rest of the week, even if I don't actually do a great deal when I'm there. Hmm.