Friday, September 28, 2007

That explains a lot

I had a doctor's appointment the other day, and happily, it was Dr W, my GP of many years, just back from her maternity leave. The whole DLA, GP on leave, locum doctor who wouldn't listen to me thing has finally become much, much more clear.

(Brief recap for any new readers: earlier this year I got turned down for half my disability benefit largely on the basis of a report by Dr M, a locum who was covering the maternity leave of Dr W. This baffled and upset me as Dr W has always supported my benefit claim - it was her who insisted I stop work. Dr M reported that I suffer from depression, and that I have no difficulty doing many everyday tasks. This is inaccurate.)

It boils down to: Dr W is an extremely good GP. However, she would be a rubbish data entry clerk.

If you were to read the actual notes that Dr W has written about me over the last couple of years, they are covered in terms like "ME", "Chronic Fatigue Syndrome", "Post-Viral Fatigue Syndrome" and so on. They describe problems I have and how I overcome them, medications that have been tried and the effects they had, how I got on at the specialist ME/CFS clinic, everything you could want to know. You would see copies of the sicknotes with "Chronic Fatigue Syndrome" written large and clear, right up to the date when the DWP decided I didn't need to submit sicknotes any more.

If, however, you were only to glance at the front page of my computerised medical notes, you would have seen:

"Current ongoing conditions: none"

You would also see a note from the late 1990s suggesting I should be monitored for symptoms of depression and anxiety. The significantly more recent psychiatrist's letter giving me a mental health all-clear, is jumbled up with the reports from every other investigation into the possible causes of my illness that I underwent at that time - psychiatrist, neurologist, physiotherapist, and probably the butcher, baker and candlestick maker for good measure. You wouldn't see it unless you hunted for it.

Add to this, that I am not one of "those" patients, who marches off to the doctor every couple of weeks clutching an article about some revolutionary new cure or treatment or research. Since the Incapacity Benefit people decided I didn't have to provide sicknotes any more, I haven't actually been to see my GP about the whole ME thing, I've just turned up when I start oozing. Okay, so my tendency to get the sort of tonsillitis or ear infection that makes a practised GP recoil in horror and begin writing the scrip for antibiotics before they've even sat back down is because of the ME, but that's beside the point. If you look at the summaries of my recent visits on the notes, they're nothing to do with the ME.

So, let's look at my encounters with Dr M from a more sympathetic point of view.

A patient wobbles slowly into the consulting room, leaning on a walking stick and pulling faces. She gasps as she sits down, and explains she has come to see you about an ear infection. You look in her ear and sure enough, it's gunky. You look at her throat and that doesn't look too healthy either. You ask about other symptoms and she says that although she's having a bit more difficulty with certain things, it's just like an extra helping of her normal symptoms.

You quickly look at the notes on the screen. No ongoing conditions, the last thing she was here for was a throat infection, what's going on? What "normal symptoms"? What's with the stick? You ask what she means and she looks at you a bit funny before saying "the ME, or CFS, or whatever you want to call it." You spot a flag telling you to monitor her for mental health problems. Gently you ask a couple more questions. The patient says she's been like this for a couple of years, and no longer has a job. You can't quite make up your mind whether she's actually ill, or if she's a benefit scrounger, or if she's under some kind of delusion that she suffers a physical illness - she seems quite certain that it should be on her notes somewhere - but right now it's not terribly important. She has come here with an ear infection, she very obviously HAS an ear infection, so let's treat that and leave the rest for another day. Then, when you think you're home free, she tells you her benefit is being reviewed and that you may get a letter through asking for a GP's report. Great.

This also explains why Dr M was kind of obstructive when I asked to see my medical records. It could be psychologically damaging for a delusional person to read that their family GP thinks that they are delusional...

Dr W has of course apologised and corrected the front page. She's also made sure to put in plenty of information in the notes for our recent consultation a couple of days ago that might be important for whatever new doctor I get in Leamington - basically making sure the relevant details are at the top for a new GP. Yes, I realise there is a possibility that I am delusional and she is humouring me, or that I hallucinated the whole thing. But that just gets too metaphysical. I shall stick with the logic that, if the psychiatrists don't want to try and treat me, or even put me on a waiting list, and I'm not on psychiatric medication, and I'm not crying all the time, then I'm okay in that respect.

In other news... Stage One of the move has gone well. I will write more about it another time. For now, suffice to say that I am in one piece, partially unpacked, and very happy.

Monday, September 24, 2007

Almost done

So, today is my last full day here on my little lonesome. I have one more night with a bed all to myself, and then I become a respectably living-in-sin woman. According to The Plan, Steve should turn up here tomorrow, on Wednesday take me to the doctor and help me pack more stuff, and on Thursday (possibly Friday), whisk me away for good.

Thursday (possibly Friday) isn't actually the Official Move Date. But with the best will in the world, I am not going to be a great deal of help with shifting boxes and furniture out of a first-floor flat. So we're moving me first, with a suitcase containing the stuff I need or that is highly important to me, and then at a slightly later date, Steve is going to come here on his own with a van which my friends and family will help him load up with boxes of books, furniture, remaining clothes and stuff. My mum and stepdad will be in and out disposing of the bits and bobs that I won't be taking with me, and then at a slightly later still date (which is so late mostly because of the "one month's notice" thing) they'll return the keys to my landlord on my behalf and hopefully get my deposit back too.

It feels REALLY weird. All of it. Like, I don't exactly have hundreds of friends who I see every week here, but I have a small handful of people I would define as Real Friends. And I am going to miss each and every one of them. They're all happy for me, they're all glad things are working out and going my way, but it still felt odd to hug someone and say goodbye like I have done a hundred times before but then instead of saying "don't forget to send me a text about next weekend" or similar, saying "don't forget to email me, and good luck with [long term life plans]."

The worst one is going to be Pip. And the Littlun of course, but let's be honest, I haven't known the Littlun as long and he's not a fab conversationalist. Admittedly neither is Pip but we have best-friend telepathy. But I'm not sure how well said telepathy will work across this kind of distance.

I miss him already and I've not even gone yet.

Tuesday, September 18, 2007


Today, I've been doing a lot of the admin side of moving. This has involved listening to far too much hold-music, negotiating with automated systems, speaking to people with assorted flavours of so-broad-it's-barely-understandable accents from around the globe, and silent swearing when my mobile started to ring *just* as the people at the JobCentre said "Good afternoon, can I take your national insurance number?"

I started my day by sorting out some letters with the date that Steve and I have defined as the Official Moving Date. There's a letter to the landlord, and two to Waveney District Council - one for the Council Tax department and one for the Housing and Council Tax Benefit department (Waveney District Council rarely if ever answer their phones). I emailed the document to myself and went to mum's to print it out. Well, that was the plan. In real life, we discovered mum's printer had run out of ink (magenta ink to be precise, are there any b3tans with a confession to make?). I couldn't easily find a way to convince it that being out of magenta ink did not preclude printing a black and white text-only document, so I let her have the fun of reordering the cartridges while I went to the internet cafe a couple of doors down to print my stuff off there.

Home, a bit of lunch, a bit of a rest, and then I got on the phone, and in the case of TV licensing, the internet, because their automated voice-recognition system is beyond crap. Now it's half past four, and I've decided I'm finished for the phone for the day. My arms and shoulders ache from holding the handset up to my head, and my speech has gone completely, I simply don't make sense any more.

But I'm still not finished for sorting out this move. Let's recap.

Notice to Landlord
Council Tax notification
Housing and Council Tax Benefit notification
TV license
Water (supply)
Water (sewerage) (these have to be separate here)
Phone (calls)
Phone (line rental)
Incapacity Benefit (except, I have to call them again once I've arranged a new GP at the other end)

Electricity (need a final meter reading five days before Official Move Date)

Building Society
Credit Card
South Warwickshire PCT (for GP, dentist, etc. Still not entirely sure how this will work)

Can anyone think of anything I've missed? Gas isn't on the list because this is an electric-only flat, and I don't have a car or pet or gun license... ideas welcome.

This afternoon has reassured me that I still have a certain level of job skills, but reminded me that I mustn't get ahead of myself and apply for jobs where I'll have to concentrate for more than an hour or so at a time.

Tuesday, September 11, 2007

An Announcement

I am rather excited right now.

Steve and I decided we were going to move in together quite some time ago, but there's always been something that's a reason not to. I've had a big hospital appointment coming up. He's been overworked. I've been messing about with a benefit renewal and don't want to move in the middle of it. He wants to get his exams done first. There's a holiday/birthday/other miscellaneous event going on. Whatever.

This month, though, we decided we were just going to go ahead and do it (this is why I have been cleaning under my bed). And today, we put a definite if slightly imprecise schedule on it. Due to the sizeable distance between us, the issues of merging two fully equipped and furnished households into one, and the challenges imposed by my limited capabilities, it's going to be a bit trickier than it might otherwise have been. However, we've developed a plan for moving me and my stuff over a period of a couple of weeks which seems like it'll work. A few minor details need sorting out - friends need to be enlisted at each end to help shift stuff, a van needs to be hired, that sort of thing - but we aim to start the move about two weeks from now, and have it completed within about two weeks of that.

I am so excited I can't even describe it.

Monday, September 10, 2007


For various reasons, it's seemed like a good idea to start tidying up the flat a bit this week. It's not UN-tidy as such - day to day things like the dishes and the laundry and making sure there's no new life-forms in the fridge are well under control - but there's some less urgent stuff that wanted doing, like pruning my wardrobe and vacuuming under the bed.

This morning I had a wardrobe full of clothes and Nothing To Wear. Now I have five bags of clothes for my sister to go through and a wardrobe that's about a third full of everyday clothes which (with only one or two exceptions such as my one Smart Suit) I have worn and washed at least once in the last twelve months. I think this is an improvement.

I also found at least half a dozen pairs of black tights (I have kept two pairs which were still on the cardboard), a couple of bits of lacy underwear which had hidden behind my socks and still had the tags in, and three or four rather small tops which I used to wear when I was very fit and went out to dance for several hours at least once a week. I'm not even going to try to try them on, I don't think I could deal with that kind of trauma. Sister Dearest will love them though.

Having got over that little blast from the past, I started to tackle the depths of under my bed. At first it wasn't too bad, it was all stuff I knew was there. A plastic box containing my spare duvet. A pair of wings and a halo from a fancy dress competition in the aforementioned going-out-and-dancing days (*sniff*) that someone borrowed last year. A large sports bag which I have lugged around more train stations than I care to remember while on weekend jaunts to see various internet people. I could even run up and down stairs while carrying it and never missed a connection...
*sneezes from dust*

This didn't put me in the right frame of mind to hit The Paperwork.

There was a period, when I first got sick, where I didn't really realise what was going on and thought I just had a couple of nasty bugs and would get over it. This wasn't a happy time. When I look back now, I realise I was being ridiculous, but at the time, I thought I was making sense.

So there were a number of incidents to do with me fainting but refusing to go to hospital because I was running late for work and had clients to see and "it's just a bit of flu or something". There were also a number of times when I walked into the building where I worked and someone from another organisation took one look at me and pretty much forcibly ushered me into their car and drove me straight back home.

In these circumstances, paperwork wasn't top of my priorities. I would come in the front door, pick up my post, go up the stairs to my flat, and lie down on my bed and go to sleep, complete with my handful of post, my glasses, my coat, my bag, my shoes, everything. Stuff on the bed got pushed off the bed, and eventually underneath it.

Which is why today's discoveries were lurking there to upset me. I'm not sure what's worse. There's the stuff I do remember - handouts from work-based training I did and meetings I went to, printouts of emails, a magazine, some train tickets - which remind me of the life I used to have. And then, there's the stuff I don't remember, and it scares me a little that I don't remember it. Like, a tesco clubcard and two key fobs, still stuck to the letter they came with. The name is mine, the address is here, but I can't remember applying for it - and how can I have been too knackered to sign the card and stick it in my purse? Or an invite to a party I'm fairly certain I didn't go to. I hope I at least phoned to apologise.

I'm feeling very angry and I can't put my finger on exactly why. It's not that I want my old life back. I mean, it would be nice to not be in pain, or confined to bed so much (and it would be nice to be a size 10 again). But if giving up the pain and malaise (and excess flab) also meant giving up the friends I've made, the relationship with Steve, the steadiness I've acquired, and picking up at age 23 again, I would not do it.

I think the anger might be because the shift in pace and circumstances was not my choice. I didn't want to become unemployed, and I didn't "deserve" to get ill or do anything that made me ill. It was all completely out of my control and I hate that.

Carrying on from that, I think it's also affected by Sister Dearest. She's currently the same age I was when it all fell apart, and she *is* in control of her life, she *has* chosen to leave her job, she actively says and does things to steer her life in the direction she *wants* it to go.

Nah. I think it's mostly because I have done too much physically today. Also I have been inhaling two-year-old dust and that can't be good for you. Here's hoping I feel perkier tomorrow and that Sister Dearest enjoys my castoffs.

Oh, and good news. I have a routine doctor's appointment coming up in two weeks, and I've just found out that it will be with my actual proper GP, the lovely Dr W, rather than the smegging bloody Locum who cocked up my DLA. Hurrah!

Saturday, September 08, 2007

First Pair Of Socks

Socks on feet!
Originally uploaded by girl_of_bats
So, here we are, second sock completed.

In a wonderful piece of timing, the weather clouded over and got chilly just as I finished taking these photographs, so while I then got cold hands and nose, I did not get cold feetses because they were all happy in snuggly hand-knit socks.

I have to acknowledge that I didn't do these all by myself. There was much help deciphering instructions from internet people like Carie and also, Jiva did a row or two (can't remember) on sock #1 the night we went to the Cider Shed. But, I still have a great sense of personal achievement.

That is good, because really, I needed something to boost me today. Pip still hasn't got his car sorted, so I haven't seen him in quite a while, and phone conversations tend to get interrupted by the Littlun.

I have seen my mother, but she's rather preoccupied with my sister at the moment, who quit her job at the beginning of the week. I spent half an hour by the clock this morning hearing about how wonderful she is and how proud mum is of her. I don't dispute that my sister was capable of doing her job properly (working in a shoe shop) or that this is a good thing. I just don't think it's the best thing since the feeding of the five thousand, I feel that shoe-shop skills are a bit useless once you've quit your shoe-shop-job, and there's a limit to how much cheerleading about a Person Not Present I can listen to before I want to stab DPNs through my ears. Thirty minutes in one go was a bit much.

Okay, so there was a little teensy-weensy bit of me (only, like 85% or something) thinking "hey! Where's the parental pride in MY skills?" but it shouldn't come as a surprise to learn that I didn't actually have the guts to come out and say that.

And anyway, I have Socks.

Wednesday, September 05, 2007

As regular readers know, I have a neighbour, S, who has a drug problem. I'm calling it a problem because things like this happen. That's a problem. I don't consider telling you this to be a breach of confidentiality as she herself tells most people within thirty seconds of meeting them.

The thing is, S is a nice girl. I'm calling her a nice girl because of things like this. We have cups of tea and chats and occasionally go to the seafront for an ice cream together or something. I would go so far as to call her a friend, albeit not a friend I would lend £20.

S's habit and attendant mental health problems mean that she is classed as a disabled person by the benefits system and social services and as such she has help coming out of her ears - not just family and friends, but also plenty of money and more home-visiting social workers and community health workers and 24/7 helplines than you could shake a stick at. Then there's a plethora of voluntary and religious groups such as the Salvation Army offering her cooked meals, secondhand furnishings for her flat, company and friendship, and the salvation of her eternal soul. So the last thing she needs is me trying to "help" her, because really? Drop, meet ocean. Everyone she meets wants to "help" her.

But. She's my neighbour, she's a friend, and as such, I do worry about her sometimes. I want to make sure that I'm not saying stupid things or being counter-productive to her therapy. There's also been a couple of times when I've seen her and she's scared me - semi-conscious and white as a sheet, unable to open her eyes properly or speak in complete sentences. Is that what people usually look like when they've been using heroin, or is there a major problem? I don't so much want to know how to "help", as how to avert potential disaster and Not Cock Things Up. You understand where I'm coming from? It's sort of a case of, do I want to save her, get her back on her feet, look after her? No. But do I want to make her problems worse? No. Do I want her to die in front of me because I didn't know what to do or when to do it? Really not.

How would one find these things out? Well, I have the whole internet at my fingertips and I figured a good place to start would be NORCAS, the main drugs and alcohol charity in East Anglia. From the front page of their website (my emphasis):

"Our mission statement is 'To reduce the harm to individuals, and thereby to society at large, from the misuse of drugs and alcohol'. We are here to work with anyone experiencing problems with alcohol, drugs, tranquillisers or solvents, including families and carers."

Marvellous. I was a little disappointed that the website contained not much apart from a list of websites and the disclaimer "These websites may contain views which are not supported by NORCAS", but it did have contact details so I emailed asking for specific help. I outlined the situation and asked:

"I need to know at which point I should get worried or call for help, and who I should call; I need to know if I should be talking about it with her, or trying to keep conversations completely off it; I need to know how to make sure I'm not being counter-productive to [the rehab/therapy bunch]'s approach."

Today I finally got a reply.

"For your own information and to further support your friend, there are various organisations offering advice and information that can be found on the web and via telephone..."

So not you lot, then? And if I email them, will they just give me addresses for other people I can email? Talk about buck-passing. Your mission statement says you'll help, not just "signpost". So far you've given me no more help than Google.

"It would do no harm to encourage your friend to seek support from an agency such as NORCAS and if she is already doing so, supporting her in this. It may also be supportive for her to know that she can talk to you."

No. I don't want to be yet another counsellor. I want to know what tack I should take in order to not put my foot in it.

"If you are concerned about your friend at any time and believe that there is a need for medical intervention, I can only advise that you contact the ambulance service immediately."

Right. I'll also get the kettle on for Tom's colleagues so that they won't get too frustrated having been hauled out to tell me "this is what heroin users always look like, there's nothing wrong with her and nothing we can do, you are wasting our time."

Paul Allum of NORCAS, you are as much use as a chocolate teapot. I'm not sure why you get paid and I can only hope that the help your organisation offers the addicts themselves far exceeds the so-called help you've offered me.

Okay, so I'm not actually going to send that as a reply. But I'm tempted (and I kind of hope he googles himself and finds this). Any suggestions on a more polite response, or should I just leave it?

Oh, and a quick knitting update - I'm on the home stretch of the second sock and hope to have a finished pair within the week.