Well what can I say ? It's been a long time and, in the small way of a life with M.E., quite a lot has happened.
There were trips out and visits from relatives during the school hols and at the end a lovely short break right by the seaside. I know how much the seaside means to me but it wasn't until we were finally there that I realised just how much I'd missed the sounds and smells and sights of the shoreline.
Now we're back to the routine of school and work and domestic duties and the holiday is a lovely memory. I feel slightly different and more in tune because during my break away from you all I was also coming off the low dose of SSRI I have been taking for the last 7 years. Such drugs are often presctribed for PWME and, initially, during the shock of becoming so ill and losing so much they were useful. Over the last 3 years I've pleaded with my GP to support me in coming off --- but to no avai. Finally I asserted myself and spent the summer holidays gradually tapering the dose. Now I'm finally free of the chemicals and life is more real -- the good, the bad, the ups and downs but I feel more connected.
Next week I have the visit from the Insurance psychiatrist to assess whether or not I am geniuinely physically unwell and unable to work or whether I have a condition that could be turned around by CBT and Graded Exercise so I can return to work and pay my own pension premiuims. Mmmmmm.....wonder what he'll decide ? Answers on a postcard please.
I bet I know already. Sadly I have to go through this charade or they've threatened to leave me with no pension at all and cut me off.
Lastly, the summer was made more enjoyable by the publication of Nasim Jaffry's book 'The State of Me' A brilliant read that can only do good in terms of letting to worold know how it os to live with M.E. but in the most charming, involving and humorous way possible.
10 comments:
Blimey, Cusp, I nearly fell right into Shangri-la just now.
I have to say I no like the sound of your GP and when all this insurance business is over perhaps you could trade him in for another one. Tell the trick-cyclist your truth. If he comes with an open mind he will hear you. If not, there is nothing you could have done anyway. It's appalling that you should have to be put through this!
- and just to add to what you said about Nasim's book: I think it was also the first novel since the beginning of the year that I actually managed to read and take in. As I said on my blog, it's written in a way that makes it brain-friendly to PWME, and it ain't often you get a novel that is both that and literary.
I like wot Signs said.
Hope the visit is bearable.
{{{Cusp}}}
And Shirl, send her love and understanding.
Dear Cusp, I'll be thinking of you during this...it's so infuriating that "they" feel the need to put us through all this. As rts says, just tell him/her what your day to day life is really like, and if he doesn't hear you then you know he was not listening.
Take heart in this: http://tinyurl.com/ytwgzd
Look at the last sentence of paragraph 2 - perhaps you should have a copy on hand!
Best Wishes,
Amanda
Well done at coming off the meds, what an achievement, you should be very proud of yourself.
Good luck with the insurance assessment, I hope that it goes well for you.
Just a short 'un to say thank all so much for your support. I'm trying not to get tsressed about it (the meeting with Tricky Dicky) but has to be said that one alwyas feels on guard and the 'back foot' in these situations.
Knowing you'll all be sitting there with me in spirit helps a lot.
Bless you x
P.S. Apologies for all the typos in this post ---- bit 'sheets to the wind' this week and can't be bothered to correct them all now: my standards are slipping
Hi cusp,
good luck with the insurance company if they have not visited yet... i have had a couple of visitations myself for an HPI provider... the first was ok but did not listen to me (or even ask the questions he was supposed to "I can answer these questions for you, i have met many people like you"!)and had an anecdote for everything, and would not stick to the point, which was draining - but the second majorly traumatised me for months afterwards as he stayed for 3 hours and went into depth about how if i looked hard enough at myself i would see why i was still ill... hmmm. Probably my own fault as i tried to be assertive and hold my own, would have been quicker to just agree perhaps? Anyway, i hope yours is not too bad, try to set a time limit at the start is my advice! I would never have a visit now without my partner there after these experiences... i don't know it you have anyone who can observe?
I don't want to worry you, and they still give me the payment so it has not affected that, they just like to entertain themselves and are not always aware of the impact they are having on ill people!
Thinking of you!
Thanks for dropping by Ashy. Yes, I've already had one interview with a Trickie - about 4 years ago, two months after my mother died and the Trickie told me I could spend my inheritance on private CBT because th esort I'd had on NHS was 'the wrong sort': wonder what he rightsort is ? Plonker! I do, thankfuly, have a partner who will shield me, should the need arise and I shall set an 'out' time at the start. Mind you, if he doesn't shut up by about3.30 the influx of post-school offspring should move hime quickly ;0)
Whether they're pleasant and chatty, unpleasant and condescending, I trust none of these Trickies and, beneath my polite 'dragged up the right way' veneer of a smile, I always hide disdain.
Hi cusp, good to read your news. Must get that book! Then I'll probably want all those around me who don't 'get it' to read it too. Great that you are off chemicals. Here's to a more real existence for you and everyone who's had the experience.
hey cusp, good luck with The Visit - i am enraged of course that you should have to go throught this - psychiatrists are not neurologists/immunologists so s/he will not actually be qualified to comment on your condition- not that they let a small detail like that get in the way of their claptrap! call their bluff & say they will be 100% responsible for any worsening of your health due to ill-advised CBT/ graded exercise. ask them if they have deigned to read any of the 4000 reports which support a biomedical cause of the illness... good luck x
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