Friday, March 30, 2007

The time has come, the walrus said, to talk of many things: of walks and blogs and social services and other random stuff

First things first. The most important thing I need to say is this:

The Great London Trek

This is the blog for The Great London Trek for Fibromyalgia Awareness, aka The Girl's sponsored walk. Go see! Read the blog! Sponsor us in aid of the Fibromyalgia Assocation UK! And, perhaps most importantly, please publicise it among all your friends and relations. The more interest we can get going in this walk and in FMS awareness and all the other things we're aiming for, the more successful it will be. If anyone wants to contact The Girl direct, for example if you'd prefer to sponsor her per mile, she's at . We can also send you a document with a printable sponsor form if you ask for one there. Thank you!

Yesterday's DLA medical examination went OK. The doctor was nice, and I think she got a decent report on my situation. The only trouble was that she *poked* me a lot at the end, to see where I hurt, and of course that has affected my hip and knee rather badly. Am struggling to walk at all at the mo. Fortunately, today was the beginning of my four-day 'emergency care package' from the Council - they won't admit that I need regular care yet, but they're happy to provide it while The Girl is away (for Passover), possibly in case I sue them or something... Two perfectly nice ladies have visited so far, with another on her way this evening. It's already a useful lesson in the fact that I have no idea how to use such support - at least, not in half-hour slots (I can use The Girl in slots of between two and ten minutes throughout the day much better - "Can you just get/do/carry/arrange this for me please? Thanks!") So if I do get approved for regular care, I shall have to think carefully about what I need and how best to go about arranging that. Interesting. Still, I already feel far less forlorn that I usually do when The Girl goes away. And having people to help me out has meant I can stay off my feet when necessary, which is nice for my poor hip and foot. Yay. The one irritating thing is that our entry phone is broken, which means that I have to go downstairs to let them in. Three times a day. This is not nice for my poor hip and knee. We're trying to get the entry phone fixed. This will depend on whether our letting agency is at all interested in fixing it. Hmm.

And finally: Greenbelt! This is the Christian Arts Festival that I go to every year, of one year I arrived 'straight' and in painful denial, and left very happy to be a bisexual/gay Christian fame. It's my yearly pilgrimage. I know it's months away, but I can't wait. They are being marvellously helpful, giving me a discount and letting me bring The Girl for free as my carer. Now we just need to sort out an accessible B&B in the area. It's going to be very exciting.

Thursday, March 29, 2007

More hoops to jump through, from DLA to social services...

I've got a medical for my DLA application today. I am very nervous.

For those who don't live in the UK so don't know about it: DLA is not exactly a social security payment (we have an incapacity benefit for that). It's more of an extra allowance that acknowledges that disabled/ill people have extra needs and added living costs that other people don't have. I've already been approved for the highest rate for mobility costs, and I don't think they can take that away from me as it's clear I have major mobility problems. But I was only approved for a low rate of care money, when I should really be on 'middle rate' for care, given how much The Girl has to do for me. So I asked them to reconsider, and they're sending a doctor to my house to assess me (at first they wanted me to come in to their centre, but that idea was giving me so many panic attacks that we asked for a home visit).

I should be fine because The Girl will be with me and won't allow the doctor to do anything wrong. She will also be checking that I don't forget anything or get confused and make mistakes (I have severe doctor phobia, and the brain fog will kick in as a result of that and I won't remember ANYTHING...) I'm just hoping it isn't too stressful or anxiety-causing, especially as I have a British Sign Language exam tonight. If I get turned down, it won't be the end of the world - but I probably won't be appealling, as a fair number of people with ME/CFS and FMS are turned down at appeal (and even have money taken away that's already been approved) because of how little-known/understood these conditions and their effects are. So this is my last chance at getting money that I *really* need for physio, remedial massage, hydrotherapy, consultant's fees and actual personal care. I just need to remember that it's not the end of the world if I don't get it, because I still have some money coming in (at a lower rate) from DLA. We'll see how it goes, I suppose... :S

We've just heard today that we still have more hoops to jump through with regards to getting care from social services, too. Our social worker's manager approved a care package for me immediately, but it has to go through some kind of 'board' of laypeople. It was first presented to them last week, and they asked for more information which they already had in the report, causing our social worker to want to tear his hair out. Now they're asking for further medical confirmation of my disability. Of course, all they're going to get there is a confirmation of my diagnosis and symptoms, but maybe that will help persuade them. It's highly ironic (as my social worker himself pointed out) that the social worker wrote in his report about how badly people with FMS tend to be treated, and that we tend to be disbelieved and made to jump through hoops and so on... and now that's exactly what they're doing to us. Nice. Well, in the meantime I've been approved for two visits a day (I think) from care workers on the four days that The Girl is away visiting her family abroad, as an emergency measure. So that must be a good sign.

Wednesday, March 28, 2007

What ME/CFS really is

This, written by a friend of mine with a talent for describing the undefinable, is here because I can't put it into words nearly as well as she can.

We went to the Lake District. Photos and a post to follow when I can stay awake for long enough!

Friday, March 23, 2007

Accessible London theatres: what’s showing now

The Girl has found out the following about accessible theatres in London. We did the research for our own benefit, but I realised it might be useful to post it here in case anyone's looking for accessible theatres. We have already been to see Evita at the Adelphi - access was pretty good. All the theatres listed below say that they are accessible (although how accessible may vary.)

The Girl says: Disabled people and their companion should get massively discounted tickets at every London theatre (at least half price). [lilwatchergirl says: You usually won't need proof of disability, as long as you've booked through the dedicated access line, but it might be helpful to bring something e.g. proof of DLA or incapacity benefit, or a London 'freedom pass', if you're not in a wheelchair.] Ask the individual theatre whether the seats are 'transfer', meaning you have to get out of a wheelchair and into a seat, or if they have wheelchair spaces. [lilwatchergirl says: Transfer spaces have a much better view, on the whole!] If you do not need a wheelchair, they can also tell you which seats have the most legroom. Infrared systems and induction loops should be available everywhere and, occasionally, theatres do audio described performances (mostly the National, Royal Court and RSC).

There are 3 major players in London Theatre, who own most of the theatres in the West End. They are Delfont Mackintosh, The Really Useful Group and the Ambassador Theatre Group. Take note of the service you receive at the theatre itself, as well as when booking, because it gives you an indication of how the whole company works and the service you are likely to receive elsewhere. Also, if you have a good or bad experience, The Girl would love to hear about it on .

Good luck and have a great night out!

Sharon (The Girl)

P.S The website that I have found the most useful is the wonderful .

Phone numbers given are the theatres' public helplines, for the theatre box office. Ask them about disabled people's discounts. However, for the Apollo, Cambridge, Adelphi, Palladium or Lyric theatres, the dedicated disabled people's helpline is 020 7087 7960 (See Theatre Relations).

Currently showing:

Adelphi - Evita

Apollo - Glass Menagerie

Apollo Victoria - Wicked - 020 7828 7074

Cambridge - Chicago

Coliseum - On the Town

Dominion - We will Rock You - 020 7636 2295

Duke of York - Little Shop of Horrors - 020 7565 6485

Palladium - Sound of Music

Lyceum - Lion King - 020 7420 8113

Lyric - Cabaret

Coward - Avenue Q - 0870 950 0920

Old Vic - The Entertainer - 0870 060 6628

Piccadilly - Guys and Dolls - 0870 060 6630

Playhouse - Dancing In The Streets - 0870 060 6631

Prince Edward - Mary Poppins - 020 7447 5400

Savoy - Porgy and Bess - 0870 164 8787

Victoria Palace - Billy Elliot - 020 7834 1317

Soho - Someone Else’s Shoes - 0870 429 6883

Olivier - Man of Mode - 020 7452 3000

Lyttleton - Attempts on her Life - 020 7452 3000

Cottesloe - The Reporter - 020 7452 3000

Royal Opera House - The Tempest - 020 7304 4000 (you have to be on the access list to get discount- ring them to find out)

Royal Court - Leaves - 020 7565 5000

Wednesday, March 14, 2007


I begin with a side thought. Apropos of very little: the most difficult thing about my day at the moment? Receiving unexpected visitors in the morning. It currently takes me about three hours to build up the energy to get dressed, and the two flights of stairs from our flat to the main door are a bit of an effort too. So when the electricity man rang on the intercom from downstairs, I had to decide whether I was going to trust that he was in fact the electricity man and just let him in remotely, or put on my dressing gown, struggle downstairs and hope that he didn’t think badly of me for still being in my pyjamas at 10am. In the end I went for the latter option. This happens most days, between the postman and other enquiries. If nothing else, I’m hugely thankful for the intercom that sometimes lets me get over this dilemma without having to see anyone. Anyone got any ideas on the problem of whether/how explain “I’m not lazy, just ill” to sporadic visitors who really don’t care either way? And so, moving on to the actual subject of my post...

Waiting. It’s difficult. I’ve been thinking about the waiting thing since Advent, the season of waiting on God. Now we’re in Lent, the season of discerning God’s will, and we’ve moved on at church to talking about decision-making. But I’m still working on how to keep waiting. I keep thinking how much I would appreciate having some difficult decisions to make, or any kind of decisions at all, at the moment.

I’m a workaholic and a highly driven person. Despite being too tired to do anything most of the time, to the point where I’m currently very pleased if I can read a book or focus on a TV programme for any length of time, I’m bored. I miss the stimulation, the people-contact and the sheer stupid fabulous hilarious fun of teaching. I miss my wonderful, exciting students who never fail to make me feel something, whether that’s making me want to laugh hysterically or making me want to throw their mobile phones out of the window. More than that, though, I honestly miss the craziness of trying to balance two voluntary roles with a sixty-hour working week and church attendance and a very occasional social life. It was great. I know I might not be able to live quite that hectic a life again, but I want some of it back.

When I first got ill, I expected it to last a few days. When it carried on, I thought it would last a few weeks, or at most a matter of months – especially when I went into remission and thought things were getting a lot better, and went straight back to my usual ‘crush in as much as you can possibly fit, and then add a few more things’ approach to life. Now... Well, I don’t know what I think now. I suppose I’m waiting for the next period of remission to come along - knowing that it might not for a while. Meanwhile, everything is taking so long, and it feels like I can’t achieve anything yet.

Of course, I’m not just waiting. I’m doing physio, aka battling against severe post-exertional fatigue in an effort to increase my mobility and stay fit. I’m taking medication, aka making myself very ill until I just can’t stand it anymore, in the hope that we’ll eventually hit on something that makes me feel better. I’m learning the art of pacing, aka reducing my activity levels to the point where I feel like I might as well not bother, given how little I can achieve in a day without making myself sicker, in the hope that I will be able to build them up again soon. I'm learning pain management techniques of various sorts, which can be quite a challenge. I'm working on accepting help and support with all kinds of things, despite the huge negative effect that has on my pride and sense of independence. That all takes time. So does waiting for my final approval for incapacity benefit, without which I can’t get approval to do voluntary work, without which I will not be able to test my ability and stamina for getting back to some level of paid work again. (Oh, and having some money to live on would help...) I’m impatient. I want things to move on, and I want to be myself and live my life again.

This month I have mostly been working on acceptance. As you can see from that rant, this comes and goes (I wouldn’t trust it). There are some things I can accept reasonably easily, from the odd looks and questions that come along when I use the wheelchair, to the semi-accusations from family who can’t understand why I haven’t visited them recently. I can accept a more limited range of activity in my life, being cared for by other people, and needing financial and other support on a temporary basis. I cannot accept a life that isn’t worth anything.

I want to get on with getting training and experience towards developing my career. I keep making enquires and getting nowhere, but then I’m probably not pushing hard enough – given how much energy it takes, and how little I have. I want to get on with volunteering, with getting work experience and with offering training to non-profit organisations. Before that can happen, I have to start feeling well enough to make it happen. I have to give medication and treatment time to work. I have to continue pacing myself and learning to cope with things as they are. I have to give the system time to catch up with me, and give me time to catch up with what I want. So… I wait. In the meantime, I want to do something... I’m going round in circles here.

Ideas welcome. In the meantime, I’m off to find some tea and some Migraleve. Then I’m going to start achieving things, even if that only involves taking my dry cleaning to the shop and making a couple of phone calls.

The Girl’s Fibromyalgia awareness walk, currently being referred to in the lovely lovely flat as the Great London Trek for FMS Awareness, is happening on May 11th – the day before International Fibromyalgia Awareness Day on the 12th. I’m going to start walking on the official blog for it soon, I am, I am. I just keep forgetting everything I need to do for it... :S

Monday, March 12, 2007

A summary

I'm afraid this is copied and stuck together from bits of other online journal entries (entries at these are mostly locked for password-based reading only), since I am too tired to rewrite things in more interesting ways. Such is life. :D

The Girl and I had an assessment from a social worker for care services today. He's going to recommend that they provide me with daily care to take the strain off The Girl, who is caring for me fairly constantly at the moment. He was marvellously understanding. Although he didn't know about FMS, he knew enough about ME/CFS to see the similarities between the conditions, especially in terms of the wildly fluctuating symptoms that go with both illnesses - so he took us very seriously. It was very good to get some reassurance that I am not malingering and really do qualify for care and support! However, the whole thing is now making me feel really low. It's fantastic that I should (all being well with the assessment panel) get regular care from social services. I didn't expect to qualify, though. And I feel like I don't deserve it. More than that, I feel like it shows how much I've deteriorated - and that I've given up altogether. I feel like I've fallen such a long way in just a few months. I was a successful teacher, my career was going places, life was good. Now I need help with being looked after on a daily basis.

In addition, I feel horribly guilty because the assessment was supposed to be more for The Girl than for me, to assess her needs, but it became very clear that there was very little they could do for her. Sure, getting me some outside care will help her a great deal and mean she can be getting on with other things when she would have been helping me shower etc, and will also mean that she can go away or go to university without panicking that I'm lying fallen on the floor somewhere... But I think she feels quite neglected in terms of her needs. And I don't know how to be of any support there, since I'm the problem. (However, she is looking into carers' services/voluntary support, so there may be possibilities there.)

Meh. I'm just ranting. All's OK really. The wheelchair seems to be improving my energy levels by at least 30%, which is amazing (and, to my mind, confirms that if I do have CFS as well as FMS, then the CFS is pretty mild - wheelchairs shouldn't really be helping me that much - but I'm happy with whatever improvement I can get, regardless of how I get it). I'm having many thoughts about access and attitudes, of course. I want to start a website with some funny (well, perhaps!) stories of access and attitudes in London (or perhaps more widely across the UK). If anyone wants to contribute, or knows anyone that might want to, then get in touch! It's not something I can achieve on my own - so come on board, people. :)

In a general summary of my progress: I'm 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. Pain levels fluctuate, but are mostly tolerable with medication. In terms of fatigue, 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.

Sunday, March 11, 2007


This is what happens when you shop online and don't check sizes. Saucepan provided for scale - but if you've still missed it, the tin and butter pack are, um, bloody huge. Whoops.

Here is a picture of Lisy Babe's tiny puddy tat. (I'm sure she's going to comment with something rude about how I shouldn't be posting pictures of her pussy. I thought I'd pre-empt that...)

I had a bit of a breakthrough today. I've been feeling bad/guilty/generally crap about many things recently, leading to shutting myself in the house and trying to avoid people. Mostly, this has involved an idiot who has made comments that I consider prejudiced, discriminatory and downright hurtful. I am working on the situation in positive ways. Nonetheless, that - and a couple of other incidents involving people's reactions to the chair/my illness in general - have been making me feel a bit pants.

Today began with me continuing to feel a bit pants. I have been trying very hard to get a gay Christian group with which I am involved to make their meetings more accessible - but I knew when I woke up that I didn't feel well enough to attend the whole meeting, since the social stuff afterwards runs into the late evening. So I felt guilty about that, since I demanded accessibility but wasn't going to use that facility much. I also didn't know if I felt brave enough to go in my wheelchair (I've never been to a meeting in a chair before). However, I really wasn't well enough to walk to church (where the meeting was being held), so into the chair I went. There were some questions, but on the whole people were great at ignoring it. I still felt guilty about silly things all day. "I have to stand up to stretch - what will they think?" "I need to ask for help with pouring the kettle - will they think I'm weird?" "I can't cope with having to stand in the queue for the loos - will people think I'm wrong for using the accessible toilet?" Gah...

Then, during the worship towards the end of the meeting, I had a sudden, massive breakthrough. I'd been sitting down through the songs and other 'please stand' parts of the service. I was having another stupid anxiety moment, this time worrying that people who had seen me standing up just ten minutes before would wonder why I wasn't being respectful enough to stand up for God (people don't usually 'get' how quickly my pain can fluctuate). When, suddenly, something went CLICK rather loudly in my head. My guilt and worry went *bang* as it occurred to me that if they really do object to me sitting down, which they very probably don't, then it's their problem. I made a real effort to get to the meeting. I made a real effort to get the rest of the Exec to make it accessible (and even though there were things that could have been improved there, it mostly was). I make a real effort in co-moderating this group and generally helping it to run as smoothly as possible. Anyone who can't see that, and is more concerned that I'm sitting down in the worship, is an idiot. Which is exactly what that person with the hurtful comments is, and exactly what everyone else is who says things like you're going to get dependent on that chair OR you should just go back to work - you'll never get better if you don't try OR you worry too much about illness OR do you really need that stick?... These people are not worth my energy. I have far better things to be using my spoons on. I am worth more than that. I can be proud of everything that I am - imperfect, non-functioning and human as I am, God has made me this way. And no one gets to criticise what God has made.

This may not seem like much of an epiphany. But, for me, it really really was. I hope I can hang onto it. It's important.