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Last night

I met up with four former work colleagues. All in good health, still working, financially well off, in stable relationships and thoroughly enjoying life etc

Then I looked at myself - constrained by my m.s. - in a lot of pain - financially struggling - finding life difficult - worried about the future etc.

None of the medics want to hear about this, they’ve developed techniques to protect themselves from hearing or having to confront the ‘real’ problems many pwms are experiencing because they can do sod-all about them They perpetuate the myths that we can somehow become ‘accepting’ of m.s. whilst we’re on our ‘life’s journey.’

And I hope no one suggests I stop being ‘angry’ or offers a ‘solution’ for my angst or suggest counselling.

Just accept that I feel I’ve had a raw deal - am bitter - and mega-p***** off.

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Hello Krak, I can understand all of your feelings of life not being fair, but the sad fact is that sh*t happens. I went through a spell of depression after my diagnosis and if anything was offended when others suggested counselling. But I did accept it. The first woman I saw was useless, but the next one was very good and not condescending as I had imagined counsellors to be. It was just good to hear others confirm my feelings or fears and I would not disuede anyone from using one. Maybe it isn’t for everyone, but I suppose that as with most things, you never know until you try it. Best of luck, Moira

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krak-how long have u been diagnosed?

ellie

20 years - and still as p***** off now as I was 20 years ago!

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love ya krak!

I know what you mean Mick

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although it does not help much and wastes valuable energy.

Going back to the original post. I no longer accept invitations to meet up with colleagues from my old work life because I am worried about falling and don’t want them to help cut up my food. Call me vain or image conscious but it is my choice.

M

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hiya krak maybe u r just angry and bitter cos thats part of you. nowt wrong with that! having ms doesnt suddenly make us nice positive folk. i was annoyingly positive to start with. i am not daft-i recognise some of the mental games folk play-they are not all negative- but i reckon i have quite a good grip on my reality. i wouldnt talk with me if all i did was drone on about ms! ms is a huge unwanted visitor in my life and i had the choice of fighting it (dont like that buzz word!) or just getting on with life… ellie ps for what its worth i love reading your posts cos you teach me so much-thank you!

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I hear, understand and agree! For the sake of those around me I appear stoical, upbeat, accepting, reasonably cheerful etc. I’m fortunate in that at least I feel well, I’m not in pain and whilst not especially well off I’m not poor or struggling financially.

However having PPMS which is showing no signs of slowing down or stopping I too am totally p’d off with the complete lack of support. I had to fight for DLA and Blue Badge. I’m now on PIP. Life is a daily struggle. My experience of neurologists, and I’ve had four in the last twelve years is that they’re very dismissive, can’t do anything for me, so don’t even bother to listen to me or talk to me. I’ve found myself wondering why they chose neurology as a specialism because they don’t seem that interested in it. Likewise the MS nurses. My husband is my sole carer, and I’ve been fobbed off by social services.

It seems like there is no interest in providing or researching anything which might help us.

A raw deal indeed!

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