Friday, 3 May 2013

Connections

Hi there,

So, not much to report really! I've been filling in some of my ESA50 form. Definitely getting nervous about the next steps. I would absolutely love to work again fairly soon but I know I'm not ready and doing much more than the odd bit of housework (by this I mean washing up once a day and managing to shove some laundry in the washing machine before I'm in too much pain and have to rest again) would set me back a lot at the moment. If I'm found 'fit for work' then I'll have to appeal. I just hope I have a strong support network as I can see my mental health taking a massive hit. I know I'm being cynical but being optimistic never gets me very far.

I had a letter come from the benefits office to remind me to send in a renewed fit note/doctor's letter too as mine's nearly ran out. I'm not able to pick mine up until Tuesday though (which I'll send off same day) so I'm really hoping this doesn't go against me. I intend to follow instructions to the letter so that, if anything does go wrong, I know that I've done everything right on my part. Silly me forgot my doctor's name though. I really hope the same one writes my new fit note as I'm meant to put on the form which doctor writes them for me (At my practice you don't get a specific GP unless you ask to see a particular one).

Also, I have my hospital appointment in a couple of weeks. Really interested to see what he can do for me. If I haven't said before already, I've been referred to a General Medical Practitioner. Does anyone know what the difference is between that and a GP? Do they do more thorough tests for instance? I've been getting more headaches, blurry vision and a new symptom recently. The new symptom is flashing lights in front of my eyes. It gets to a point where I actually think I've seen something out of the corner of my eye and it'll make me turn to see what it is. It's not a hallucination though, nothing like that. Because of these symptoms, I think I'd like to actually have a scan. It does worry me a bit and I don't want it getting any worse. I already don't like to walk around a shop by myself when it's really bad.

I've been twittering a fair amount actually as well. I talk a fair amount to people with differing chronic illnesses such as M.E and Fibromyalgia. It's great to be able to talk to people and not worry about if I'm moaning too much, sounding like a broken record etc. Not that my friends make me feel this way, not the real ones anyway haha. Anyway, it's interesting to hear how people are doing, the lifestyle changes they've had to make, how the docs have treated them/perceived their illnesses, the meds they've been prescribed and other things they've learnt about their illnesses. Plus we can all support each other and know that someone's listening and 'gets' it.

With M.E, in particular, again and again I hear about people having their physical illness treated as a mental illness. Psychiatrists and Psychologists are used in their treatment alongside CBT, anti anxiety and/or anti depressants. When dealing with a chronic physical illness, especially when it's been years and years, there's bound to be some sort of negative effect on ones mental health. I don't believe treatments/therapies for mental illness should be so readily used to treat the physical illness alone and as a whole however. These treatments may be useful if mental health has been affected enough to warrant it but it needs to be stressed that M.E is NOT a mental illness, neither is it caused by mental illness so shouldn't be treated as such.

If you've been reading my blog from the start then you'll know the doctors previously thought I could have M.E (although they preferred to call it CFS grrrr). My experiences of medical treatment around that time are why I reacr so passionately to how it is treated. You'll notice I 'grrred' at the CFS label. It does annoy me that it is continually used. It plays down the illness so much and makes it sound like there's only one symptom, fatigue. How can this label lead to effective treatment?

In my opinion, calling M.E, 'Chronic Fatigue Syndrome' is like calling Cystic Fibrosis, 'Bad Cough Syndrome'. Sounds ludicrous doesn't it? Obviously with CF there are definitive tests (well, as far as NHS Choices tells me anyway) but you get what I mean.

Ok I'll stop before I rant too much :) Plus my arms feel like they're about to drop off and I'm trying to actually listen to my body and rest when I need to. Bye!


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