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Happy New Year. A bit late but it's still only January and it doesn't feel too late to say it, so Happy New Year everyone.
Life in the relapse zone goes on in a monotonous, minimalist fashion. The experience has been neither profound nor enlightening. No wonderful lessons about the meaning of life, and no, I haven't turned into a flower-sniffing wimp either.
On the positive side, I have made some progress. Just a wee bit. But for the time being…I'm back in the 'severely affected' zone, and although I do not and never have seen 'severely affected' as a permanent state, I don't expect to be stuck at the severe end of the spectrum forever. (Just as an aside, I have always detested the way people in ME circles refer to 'The Severely Affected' as if referring to another species of human being.)
My 'real world' friends have been very supportive since I relapsed, which is in stark contrast with the local ME support group whose silence has been deafening. They know I have relapsed but if I am being brutally honest about it, they haven't shown any concern at all.
On the other hand…the very thought of being examined and evaluated by people who believe that if a PWME is 'severely affected' it automatically follows that they are some sort of passive, tragic stereotype begging for crumbs of sympathy. And then being the subject of the typical support group gossip that someone isn't ill as they say they are, whether or not their real problem is 'psychiatric', and so on, etc. So I'm quite happy to be outside of all of that ugly speculation.
At Christmas I received a card from one of my photography class friends. Some months ago she revealed that she is now on palliative chemo, which saddened me greatly. She included a gift token with her instruction to spend it on a photography book and to stay interested in taking photographs. I thought that was a lovely gesture.
It's getting a bit easier to pick up and camera and have the stamina to hold up my arms and adopt all these photo-taking postures, although it's still strenuous and tiring as I found out today whilst taking some snowy rooftop pictures from my balcony with my rather old but faithful point-and-shoot. I have a most uninspiring view of mostly unkempt back gardens but the triangular roof and 'stack' (or whatever it's called) of the opposite building caught my eye.
3 comments:
It looks as though you have astrally projected yourself here and taken a photograph of my roof!
I'm interested in what you say about ME support group. It has sometimes come as a shock to me to discover how unpleasant PWME can be to each other, and I have grown familiar with the 'isn't as ill as they say they are' gossip. Someone once darkly commented that it is like prisoners who turn on each other. That had a kind of resonance.
In my last post (sound of trumpets) I referred to the 25 per cent who I do feel life, so to speak in 'another country'. The kind of people I had in mind were a couple of people I know who are only able to live with constant care provision etc - and I feel sure they would nod their heads at what you said about the "passive, tragic stereotype".
Happy New Year, Digi - hope it's a good one.
Happy New Year, Signs!
I've been reading about your view through the slats and I thought of my former high rise home where I could watch the the sky in all it's glory from summer thunderstorms to winter sunsets. I miss that view. I can't open my bedroom slats where I live because I'd only be entertainment for the neighbours and I can do without that.
I've been defensive about my privacy ie my present state of health as far as the local support group is concerned because I just can't spare the energy that goes with the territory of committee/group politics. All that vying to be the sickest person in the room, the speculation over who is/isn't 'genuine', and above all, from past experience of having a very ill partner who needed a prescription filled and not being able to get out myself—I asked for help in an emergency and…no response. And I'm not one for 'taking a loan of' people, as we say where I come from.
I keep up my annual sub in order to receive information about local NHS services and so on, but I can't be dealing with the bush telegraph. It won't do anything for my recovery, will it?
Enjoying chick-lit audiobooks. A new experience for me. I'll try and write a blog post about it although I can tell whether it's 'trash' - but it's fun and it cheers me up.
Oh I hope you do write that post :)
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