Monday, April 30, 2007

tired of waiting..

I went to see Ms Brady about the posibility of re-training or getting a job, sadly the systems were down (surprise) so there was not really a lot she could say about what they could offer me.
On the plus side she was very positive about the fact that I have several options, I just have to wait until my next appointment on May 8th to look at the specifics of those options as without a working system she could not access my file or any of the relevant information - so much for technology eh?!

She had me email a copy of my cv (updated of course) and a list of the types of courses I've been looking at with regards re-training, not sure if they got through to be honest since I've had no response, i'll just make sure I take the information with me in hard copy form when I go see her (and also on my usb memory stick in txt format - just in case..)

That's one thing dealing with the benefits agency does for you - it certainly makes you think of back up systems for everything you do, if you have a project then just immediately assume you're dealing with people who are really incompetant working on a system prone to crashing. You'll soon come across as uber organised!

Meh, roll on hearing some good news, I'm lookign forward to taking control of my life again.

Saturday, April 21, 2007

Back to work

I'm going to see sue Brady at Baskerville house on Monday.
I'm nervous.

I just don't know what to expect at all. I've talked it through with Stef and he thinks it would help more in the long run if I try and get them to help me re-train in web design. I just don't know if they'll do that.
I'm also a little afraid that when I explain my problems she'll say there's not really anything they can offer me, I've taken this step, I really don't want to be shot down in flames at the first meeting.

I'm also afraid of having a relapse, I don't handle stress at all. I keep flashing back to some of my old jobs and the tightening in my chest makes me feel ill as I think of all the office politics and thoughtless managers I've had to deal with in the past.

Then I tell myself to stop being stupid, I won't be working in sales or customer service for those exact reasons, if they try to push me in those directions because of my experience i'll just have to take a stand and say NO!
These people are supposed to be here to help, there are several lasses in the support group who have used them and can't sing their praises enough. It will be ok, the worst that can happen is they say that in their opinion I'm not ready for work just yet and that will leave me no worse off than I am now.

I just really don't want to hear that.
Best case scenario for me is that they help me find a course in IT/ web design somewhere and offer help in the way of equipment and travel costs, that would help sort me out in the long term, short term; find me a job that I can either do from home or that doesn't involve me having to deal with too many people face to face or travel too far.

I just wish monday was here so I don't have this uncertainty to deal with, I want to start sorting out my future, either by starting to earn money to save towards it or by training so that i can better myself. There's nothing worse than stagnating!

Tuesday, April 17, 2007

NHS blog doctor got me thinking

I was on the comment trail and stumbled across a 'the NHS blog Doctor' after reading a few of the posts on my landing page I decided (out of curiosity) to do a search on cfs articles within the blog itself

I've been reading and reading and finally started to comment only to realise my comment was becoming a full blown post in its own right, rather than erase everything I decided to copy and paste it in here because this is MY place for MY thoughts on CFS and if I'm going to take up a lot of space, it's far more polite to do it here instead of eating up someone else's webspace..
Anyhow, a few of the comments to his articles were involved with classifications/ names and the like to them I write:

I had an initial diagnosis of PVFS about 3-4 years ago,

Now I'm classed as either CFS or ME depending on which medical person you're talking to, I've no idea when the diagnosis changed but when talking to someone I tend to use CFS as you can at least tell people what the acronym stands for - M.E. has 2 different names according to my research for the site I built about the subject (which needs updating desperately) both of which seem unpronouncable at the best of times - never mind when you're having trouble verbalising a sentance.

The things is, I really don't care what it's called but I need a name to write on the 1001 forms you're forced to fill out to keep a roof over your head when you can't work a steady job. Every time I go to see my doctor I'm praying he says "ahh.. Miss Stringer, sorry about the last few years, you were misdiagnosed, here - take these shots/ pills and you'll be fine"

I'd be too happy about being able to go back to work and being able to look at the prospect of having children without the worries of a relapse to care about a little thing like misdiagnosis.

On the aforementioned blog there is a lot of talk about Lyme disease but from just reading that wikipedia link it seems impossible to differentiate between it and CFS is it that you can test for Lyme but not CFS, or is there still no way of telling apart from a rash?
To be honest I'm almost afraid to look into it because I hate feeling like a hypochindriac, I especially hate it when my boyfriend - the person who has been the most supportive person imaginable throughout this whole thing, laughs at me and says I'm reading into things and then convincing myself I could have it - I don't, at least I tell myself I don't do that.
But do I?
If I'm completely honest with myself, I do - a little.
For example - my elbows, the pins and needles in my hands, the pain that travels up my arms into my shoulders and neck that cause the headaches.. I thought I'd found a cause for them but when I mentioned it to him, he laughed - so I didn't go to my doctor.. I should, but I don't want to have the hypochondriac label even more firmly attatched to me than it already is over the CFS one.
Is it because I'm so desperate to not have CFS/ME that I'll look at things which are treatable and mentally slot my symptoms into that shell instead of the CFS one? Or is it the more reasonable desire to know WHATS WRONG? To want to find a root cause for the problems before me so that I can understand them and find a solution.

I've been alternately researching symptoms and burying my head in the sand for so long that I no longer know just what drives me to care anymore.

(Now this is the point where every other sufferer I know will probably clamour to have me burnt at the stake..)

I do believe there is a psychological aspect to this illness and that is why CBT does help some patients and not others.
Some patients have had this for decades and have received little to no help from a recognised medical professional, they have been ridiculed by friends and family and termed a hypochondriac by one and all - these people are so depressed by the effects of the illness that it has come to define them, they respond to almost anything put forward in a kneejerk defensive manner - the 'ill try it but it wont help' attitude because they have tried practically everything available already.
CBT will only help someone who is truly open to accepting the illness and finding ways of managing to live around it - that would be the people 'new' to the illness, those still unsure just what it is they have and what the hell does it all mean. The people I mentioned before have had the illness for so long that they're stuck in the 'fighting it' stage, they will never truly accept it because how can you accept something about yourself that nobody else will?

I'm not sure if that made any sense, I guess what I'm trying to say is that CBT is a way for patients to define just what cfs means to them and then in turn helping that patient come to terms with all that definition means, people who have suffered with it for a long time already know what it means to them and therefore feel they are being patronised to and cannot take on the second part of the therapy - the part where they can come to terms with it, they already feel that they have - In other words CBT is a waste of time and resources for these people - all they really want is for people to take them seriously, becoming well is now a secondary wish because it seems a futile one.

Until there's a cure there's no point doing more than learning to manage it, in my opinion to do otherwise just stresses you out which in turn exacerbates all of your symptoms and so on and so forth the vicious circle runs ever on - the problem is, how best to manage it?

Which is why I worry about hypochondria and still occasionally look for alternative explanations for my condition on the sly.

Now I'm off to read Marys blog because from her comments over at NHS Doc she seems to be right on my wavelength..

Saturday, April 14, 2007

My elbows hurt.

Like, a lot.

they have been for a while - even before the fatigue thing started so that makes it several years, funny how I forgot they used to hurt before, blogs are great memory nudgers I guess. But of all the joit aches I have evry day, the elbows hurt the most.

Even with the 'sleepy pills' I couldn't sleep last night, the pain was just that bad. I dozed on and off but didn't really hit sleep, the one time I got comfy Stef decided he'd roll over and cuddle me and I couldn't find the comfy spot again..
I wouldn't mind but when something hurts that much it just makes all the other aches feel worse, now my wrists and my shoulders, right up to my neck, all hurt - I know, sitting hunched over a keyboard won't help, but I have to distract myself somehow.

I'm groggy and irritable from the lack of sleep and the pain but what can you do?
My elbows feel like they're on fire, it's as though the muscle or something is in the wrong place and it's stratched and fraying on both arms.. I can't straighten my arms when I'm in bed, they're always bent - I'm the most comfortable when they're raised above my head but I can't sleep that way when Stefs next to me because I've got a crappy mattress and as soon as he lies down I roll into him because of the weight difference.

I'm just sore, depressed and fed up.

Tuesday, April 03, 2007

Phenergan and ginger

After the happenings of the other night (you may wish to take a moment to check my other blog for details) I've had trouble sleeping.

I've been doing reasonably well sticking to the sleep schedule barring a couple of late nights and bad days, but since Saturday I've been lying awake with the adrenalin kicking in every single time a security light goes on or I hear the gate slam (which is a lot seeing as how they kicked in the gate as well so there's not catch to stop it)

Anyway, since I don't want to balls up the progress I've been making I went to the doctor for something to help me sleep.
I told him the situation, he was most sympathetic - actually told me to move as soon as possible, he took one look at my address, read out the street name and said he wasn't at all surprised, he's got a couple of patients along here that similar things have happened to, all older than me but classed as 'easy targets'.

He did not wish to give me sleeping tablets because, not only would he only be able to give me a weeks supply, they are highly addictive. Instead he's prescribed a course of antihistamines.
Apparantly they do the job just as well, as a bonus they should help with the dust allergy I seem to have and I can have a months worth.

Now all I have to do is wait for the council to come fit a new front door.

On the cold front, it seems the ginger method is working, I only had the sniffles for a couple of days, I do have a tickly cough but that could be because of all the dust in here, it's ridiculous how much you get in this flat.
Here's hoping we find somewhere decent to move before the end of the month - I could well do without all this!