Support group

well I took the plunge and drove to an NRAS support group meeting last nite in Newcastle. So I got prepared, paced myself during the day and drove the hour there. I'm so glad I did, I met some lovely, lovely friendly people and my biggest surprise was how normal everyone looked! I know that is a strange thing to say but as I hobble still I expected lots is sticks, chairs etc and yes some of us had, but no it struck home very much to me about the hidden illness.

The speaker was a lovely lady professor who talked bout fatigue and I felt myself nodding at everything she said! Do you fall asleep during the day, do u fall asleep on a car journey, do u have restless mites, do u feel used up! Yes,yes,yes! So it was interesting especially when she talked about your memory for things being less is due to fatigue! I just though I was getting dementia, now I know it's the tiredness!

But today now as she described, I have used up a lot of me energy "pie ", that u can use all your energy pie in one day or borrow some "pie"from tomorrow, so i used that driving back, and I am really exhausted today but going for my assessment at the hospital, no rest for the wicked eh!!

Those I met, I won't name you in order I don't embarrass you, it was a privilege and u r so lovely and brave A xxxxxxx

7 Replies

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  • You are one brave lady to drive all that way to and back again. Thats the problem with this disease nobody knows how ill we are. I only came to realise that i was ill this summer, I had just thought it was like OA, but it is isn't. I have had RA for nine years and until this last three years i just took my pills and carried on,yes i was tired,but i managed. These lovely people who run these groups are wonderful to manage as well as they do do help us others. Sylvi.xxx

  • Forgot to say DrMartin Lee was there to, the consultant who did the kayaking, he looks different without the beard, but what a legend xx

  • Wow it makes me feel almost proud to have RA reading your blog Allanah? I don't mean that I like it in any shape or form but just that such brave people seem to have it - you included of course.

    I feel mine is very invisible currently but unfortunately I also feel it's there. For example I'm stupidly tired after one lousy interview yesterday and ended up in bed for the afternoon with white fingers and the shivers. My OH said he felt exhausted too but the difference is that he works nights and is currently pulling the most weight around the house and garden by far.

    I managed to clean two bathrooms today from top to bottom and run down the hill to the co-op to buy the tea and then zonk I was back in bed with wrists in resting splints. Not managed any of my exercises in 2 days now but not because of pain - just because of this weird sensation of ovewhelming stiffness and background acid burning gnawing at my joints that I'm starting to recognise as part of the way RA manifests itself with me I reckon? So I would have been one of those looking, but not feeling fit as a fiddle at your NRAS gathering. Tilda xxx

  • Hi

    Glad you enjoyed the meeting. I agree that ra is a hidden illness.

    Rest up and renew/refresh your pie

    Sci x

  • Always a bad idea to eat up a whole pie on one sitting.... Hope you get new delivery of a pie today as you deserve it after making the effort to get there. Pollyx

  • mm Polly, as long as it is sweet! Apple or redcurrant for me!!! Definatly not steak lol Axx

  • ive often thought about going to a nras support group meeting,but if they are on an evening it puts me off as im allways worn out by about 4. but reading your blog is making me think i might try sometime very soon. jenny.x

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