Saturday, 15 September 2007

Still Life


A scooped out passion fruit

I was mucking about with still life in mind a few weeks ago, and now all of a sudden this seems highly appropriate.

I've been trying to occupy myself by backing up all my photos. It's such a mindless task, perfectly suited to when you need to mull things over. Being deep in thought sometimes works better when there is something else going on.

So I've been thinking about what to do, about how lovely people (that's you, and youandyouandyou) can be in times of need, how it's not the end but a transition. All the usual self-absorbed crap you'll generally find up here only now you know my mind is soaked in sedatives, so perhaps I can be forgiven a little. And anyway, anyone left alone for too long can run the risk of becoming tediously introspective. I salute all of you who consistently avoid tedium and self-indulgence, and frequently create quite beautiful words from silence or solitude. You are amazing.

No way is this going to become a blow-by-blow withdrawal site. As it will take some years, I simply couldn't subject myself, or anyone else to a daily account of what is going on in my body.
I won't even get an appointment to discuss what to do next for a month or so at least. So please don't all run away.

The sites I have read where someone is going through a medication change have usually been managed with dignity, humour and a large helping of consideration for readers. I have taken these observations on board.

As we go into winter (yes, I know, not yet, but personally I can't wait) I've decided to pick up a second-hand lightbox and experiment more with still life images. It should keep me amused and prove a diversion from all those flowers. As I archive everything I realise why macro photography has become my thing. It suits the slowed down body and mind very well. Your subjects don't move, you can photograph them from a scooter or wheelchair, (or soon, the kitchen table) and take your time.

It's amazing how we adapt to our circumstances, really, isn't it? And sometimes without even realising it.

Onwards.

Tuesday, 11 September 2007

Untitled

Drugs do not work in my case, and it's taken quite a while for my doped mind to figure this one out. Now my body is giving me clear signals that I have to do something about it.

Don't read on if you feel you may become distressed. I won't be writing like this very often, but I have to get this out.

I wasn't doped up three years ago when I was exhibiting very clear, checklist-like M.E. symptoms. Nobody I saw in the early days had the expertise to pick up on what was wrong, or the sense to refer me to someone who could help.
So how do you treat someone who crashes into your clinic in a state of physical crisis and emotional turmoil? Let's put ourselves in the shoes of your average UK psychiatrist for a few moments.
Picture the scene from the other side of The Desk. Occupy for a moment the tiny mind that is governed by the DSM (the handbook of mental disorders used by every dysfunctional doctor who lacks perception, life experience or empathy). What would you be thinking?
"Jeeeesus Christ."
Look at clock. Reach for DSM.
"Um."

And that's about it.
Really. Truly. That's what happened. Each psychiatrist I saw, whether at the clinic, in a respite house, during home treatment or in hospital added something new. The excuse has been that each of them was only trying to help. But throw in the combined efforts of a couple of seriously clueless GPs along the way and nobody communicating, and you get my current prescription.

Zopiclone - a sleeping tablet: addictive.
Valium - a tranquilliser: addictive.
Propranolol - a cardiac drug, given for anxiety symptoms
Mirtazepine - an antidepressant which made me eat my way out of malnutrition, only now I'm far from malnourished
Lansoprazole - used to treat gastritis and stomach ulcers. It was severe stomach problems that caused me to need hospital treatment for malnutrition. Brought about quite possibly by overloading my stomach with medication. Now I need Lansoprazole to keep my stomach functioning.

An average day: I get up, get my son breakfast. I am in a stupor, hungover from my night medication. I take my morning propranolol after he's gone to school, so I can function at least whilst he's around. If I don't take it I seize up. But when I take it, it puts me back in bed for two hours. I am not safe to so much as boil a kettle until the effects have worn off. The rest of the day is floaty. I have valium and more propranolol at 6pm. I feel groggy. I take all five drugs at bedtime. If I try to cut down on anything I fit, vomit or shake. I have been on this medication regime for more than two years. My hormones are shot to bits, I have back problems, jaundice and something vaguely referred to as 'mood disorder'. That'll be the drugs then.

Rehab was discussed but ruled out by the M.E. team who finally came into the picture sadly after I'd been put on this disastrous cocktail from hell. I have something called Multiple Chemical Sensitivity. It means my body is groaning under the pressure of these drugs, not metabolising them very well, and yet will go into crisis if withdrawal is mishandled. Not surprisingly, no one wants to go near my prescription. I can't do rehab. I don't want to be in a longterm state of withdrawal, and yet I have no choice. Five drugs to kick. One at a time. Very slowly. I'm guessing it will take the rest of my son's childhood. Robbed is such an inadequate word. Here's a few more. Violated. Abused. Fucking Furious.

So there you have it. I'm finally out as a prescription junkie. But I hope you all understand that it's the last thing I wanted to happen, and I never would have thought it possible that the strong, capable person of four years ago would end up like this.

Why have I done this now? Because I wanted to. Because it's time. Because I'm not ashamed. And because I don't want anyone to ever live even one day like I had to for months on end in the not so distant past...lying on the bathroom floor, less than seven stone, too weak to lift my head to vomit, my then partner trying to keep my son away because the scene was just too terrifying.

"Is Mum being sick again?"
"No, now come downstairs. It's nearly time for school."

Monday, 10 September 2007

The thing is

Loneliness and sedation are a bad combination. You become very introspective and things can spiral downwards very quickly. The answer? Well, less sedation longterm but this afternoon I made myself go out again, despite a very crap morning.
It was the only answer. I went to school then spent a couple of hours out watching my son skateboarding with his friends. All I had to do was sit and watch. And I felt better. So much better than lying in bed, which is what I really wanted to do. And some days that's fine. But not when there's life to be lived, even if it amounts to little more than sitting on a bench. And I'm not writing this for 'well done' comments. I'm writing this to record the fact that I managed to somehow turn today around.
I'm having to do the one day at a time rule. I find a dip in my mental health sends me pretty much into 'too much' mode. It's all just too much to cope with.
That's the complete bummer about dealing with a dual diagnosis, as they call it.
The physical side of things can be unpredictable enough, but the mood swings and depression, anxiety etc etc can be impossible to track, let alone plan for, react to or chart in any way. And my moods are not only affected by my physical condition, but by a pretty poor psychological state and really crap prescription drugs.
I know I have to do something about it. But you try getting anyone in the health service to agree they've badly messed up and THEN agree to help you unmess it.
That, my friends, is the dilemma. And all I can do for now is try to distract myself on the really bad days. And stop buying so many chocolate biscuits perhaps.

Very low

Sometimes I honestly believe I am going to die of exhaustion. I really believe that my heart is going to pack in or I will collapse and just not get up again.
And sometimes I actually want that to happen.
I went to the dentist today. The taxi journey there was enough to tell me I shouldn't have gone. But I'd left any sort of check-up for more than a year. So I went. The dentist was a new guy, young, just out of medical school. And he didn't do anything. I was expecting a basic check up, a scale and polish, and perhaps a filling. But nothing. Why? Because I listed my medication, answered his questions about organ function checks and suchlike and he blanched.
I came away without even a scale and polish. Now surely a tooth tickle is hardly going to be any risk to my health, is it?
But he didn't want the responsibility on his shoulders for anything to do with me.
I am sick of being on so much medication that it scares even doctors.
I am sick of being so disabled that no one knows what to do with me, so no one does anything. When I brought up medication with my GP in a recent phone consultation she suggested I visit the local chemist for a prescription MOT.
Um, I think a clinical pharmacologist may be of more use but will she refer me? No, because as every doctor dealing with me knows..."Whatever you do, don't TOUCH the medication."
Nevermind the fact that it's all making me feel 100 per cent worse and the side effects are as bad as my actual condition.
I am depressed, and yet this is allowed to continue. My notes over at the mental health clinic probably read "Yadeyadeyah, blah, blah, whatever." Because of COURSE I am depressed. I'm fat, miserable, lonely, can't go anywhere, can't do anything. I stay in bed half the day. I overeat. I have no motivation to try and do things. I can't enjoy time with my son, I am exhausted when I try to do anything enjoyable. Who can possibly help me? What treatment is going to possibly be of any benefit? None. So nothing happens and I just rot away in my own stomach acid.
Yes. I'm feeling very low. And no one is helping me.

Monday, 3 September 2007

Back To Schooooooool

And today (being a teacher training day) has been spent completely doing other things until about, ooh, two hours ago.
Then suddenly we HAVE to find a protractor (because they're so useful in adult life aren't they?) and I find myself pleading with my son to fill in just some of the DAILY diary he was set as holiday homework.
Holiday homework! Cuh! We naturally ditched the very notion six weeks ago, but suddenly bottled out at the last minute.
What if the teacher is, like, really cross?
Do I, in truth, give a monkeys? No! Holiday homework! Arse!
I decided a compromise was best. He filled in the more interesting days, the time spent actually doing stuff because of course doing stuff is what they want to hear all about, rather than just hanging out, loafing around, chillin'...so we left the rest blank.
It made me realise there has been quite a lot going on, and to be frank, not nearly enough of the monotony I remember in the 70s. Ah, the 70s. When you weren't expected to be multi-tasking until adulthood, when overstimulation generally involved illicit drugs, and when you were expected to be bored in the holidays and put up with it until the two weeks at the seaside. No playstation. No channel-hopping. Just space hopping and, and...the sound of lawnmowers?
And as for holiday homework. There never was such a thing. Probably because it was the 70s, when people went on strike and belonged to unions and had rights and actually stuck up for themselves. They probably didn't dare even suggest holiday homework. Then everything changed. I blame Margaret Thatcher.
God if it's like this now, how the crap am I going to cope when he's suddenly getting ready for secondary school and actually knows what a protractor is for... except I still don't????? Enough. Bed.

Sunday, 2 September 2007

Night night from me too

I'd like to know if anyone out there knows how you take pictures of the night sky. There was such a beautiful moon tonight, with those little scudding silver clouds all around.

A dreamy song drifted up from someone's garden a few doors away, and I lay in my bath, bathed in silver rather than Clary Sage for once listening to...well Who WAS that lovely male vocalist with his whimsical melodies and that gorgeous string arrangement shimmering through the trees as they whispered their gentle accompaniment? I should have been out there lying on silk cushions and drinking tea from a glass it was so lovely.

I'm so lucky to be able to lie in the bath for over an hour with the sash window open, looking out over a really beautiful nocturnal vista of trees, occasionally softly lit by a garden candle or patio light. By daylight it's nothing special. It needs dusky shadows and a breeze to bring it to life.

Even when temperatures hit below zero I bet money on me still having the window wide open. It's too special an experience to miss. It's when the streets fall quiet and you hear foxes and owls. Imagine added frost and stars. I'll just have to add more hot water.

Friday, 31 August 2007

One that got through...

Night night, love you too

A text from my son. God I've missed him this week. Reception has been virtually non-existent down in Cornwall, which I suppose is a good thing as it means there can't be too many mobile phone masts wrecking the scenery down there.
My ex and I are gradually learning to holiday separately, as we have separated, which means phoning now feels inappropriate. When we were still together, there were many trips that had to be taken without me, but lots of phonecalls.
Yes in truth I want be able to talk to my son anytime, but I feel that this week was Dad time.
It's been a long week. But the main thing is that they have had a proper holiday. And maybe now the ties have been cut, it was guilt free, unlike in previous years.

Thursday, 30 August 2007

Up a gear

I have v little energy but wanted to say that I found out this week I qualify for the high rate mobility component of DLA, after much battling.
So whilst I am still creaking from the other day, at least I now have many and varied new mobility options open to me that I am in truth yet to get my head around.
First up, I whizz around the board and collect a Blue Badge immediately, having languished in jail for several goes, despite appeals to my consultant to release me by writing to the Blue Badge people. He didn't so I only now get a badge.
Second up, I can afford to pay for taxis for at least a few more turns whilst I consider options three and four, involving Motability, which I know v little about at present.
Being on high rate mobility also might convince social services that I need slightly more help than they are currently proposing, which amounts to not a lot.
But I really can't write about it at length at the mo (thank goodness, nuff said).

My friend came over yesterday and being one who understands only too well the energy expenditure/pain payback thing, we were soon frankly having to laugh over how incredibly knackered I have made myself by having a garden strop in a straw hat. She's had similar moments of frustration, with similar results. And because she knows how I'm feeling she:

Went to the chemist to collect me a prescription
Got me some food because I ran out and can't face doing an online order
Made lots of tea
Told me to try softly punching cushions next time

And she told me that although I can no longer drive, someone else can drive a car on the Motability scheme for my use. Is that true? I can hardly believe it. Is the tide turning, I wonder?

Freedom seems such an alien concept I'm almost scared to push on and achieve it. Is it possible that in the course of becoming disabled we can sometimes become stuck in a particular way of doing things, even if it's not the best way, because it's all there has been for so long? If so then doing things differently means changing bad habits that have arisen more through deprivation than lack of concern for oneself. I am used to things being impossibly difficult. I will almost struggle if things become easier. This seems ludicrous.