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Posted: Wed Mar 09, 2011 7:16 pm
by elizabethr
ME (Chronic fatigue syndrome) diagnosed today. Sad but not surprised and in some respects it makes things easier because at least now people realize what's the matter. Work will stop hasseling me so much but money will end up being a problem if I can't get back. Support doors will open but the me I know will need to change - no more cavorting on the stage for me. Perhaps i will take up jigsaws!!!

Posted: Wed Mar 09, 2011 7:33 pm
by Foggy
Once you learn to "pace" and to resist the cavorting things will get easier. You will also learn the warning signs and slow down in advance of a meltdown ( I am "lucky" in that, if I start to overdo things, I get tinnitus before being bedridden for a while -- so slow down right away and usually get away with it). My biggest bug bear is driving ... I can do the journey, but DO pay for it afterwards (sometimes it's worth it though !).

Posted: Wed Mar 09, 2011 7:39 pm
by elizabethr
Thanks Foggy - have been learning already over the last couple of weeks - the diagnosis just explains everything now. Just need to get my financial stress sorted and hopefully a F&F intended will go through (my family is funding) and then i can settle back and manage the condition better. Thanks again.

Posted: Wed Mar 09, 2011 7:40 pm
by kallis3
I'm glad you've finally been diagnosed Elizabeth - at least you know what you are up against.

Hope you get the support you need.

Posted: Wed Mar 09, 2011 7:45 pm
by nepensioner
I know it sounds bad to say am glad you have a diagnosis, but it must be such a relief that a name has been put to your problems. Be patient and all will be well

Posted: Wed Mar 09, 2011 7:53 pm
by Paula.bg
That's right. Must be a relief. Glad you have a few answers. :)

Posted: Wed Mar 09, 2011 10:04 pm
by Broke of London
Good news and bad news all in one. Work will have to ease off now and you can start properly looking after yourself. You can still cavort, you'll just need to rest up beforehand and afterwards...like some grand dame! xx

Posted: Wed Mar 09, 2011 10:11 pm
by Lisa2009
Getting a diagnosis is a relief. I have MS and suffer extreme fatigue. I sleep all day after driving the kids to school to give me just enough energy to function once they get home. I still have to pace myself though. Do little and take plenty of rests.
I was given tablets to help me stay awake through the day but was taken straight back off them as they gave me Amnesia LOL

Posted: Thu Mar 10, 2011 11:38 am
by elizabethr
Thanks for the messages. I had begun to realise what the problem was over the last 2 weeks.At first couldn't work out the problem having been off work since last Oct/Nov with heart disease and had test etc I was getting worse not better. Had to begun to realise that i was trying to "make" myself better rather than pace which is totally different. I start with a good ME specialist next week who I have known for years and as it's been noticed before I've got too disabilitated I hopefully won't end up in a wheel chair - he knows my train of thought and he says I will have to follow his programme to the letter -hm doing as I am told - that will be a new one.

Thanks for the support

Posted: Thu Mar 10, 2011 11:43 am
by kallis3
You do need to do as you are told Elizabeth - hopefully you will make a full recovery from this. You certainly sound more positive today than you have done recently.

Posted: Thu Mar 10, 2011 11:45 am
by Broke of London
That's fantastic that you have such great support. You may even enjoy being bossed about and looked after for a bit!! Lisa - I didn't realise ME could be so extreme. I know a couple of people who had it and they needed afternoon naps and early nights but they must have been mild forms.

Posted: Thu Mar 10, 2011 11:48 am
by kallis3
Lisa has MS BOL which is different to ME.

Posted: Thu Mar 10, 2011 11:52 am
by Broke of London
My dodgy eyes again! Sorry Lisa x

Posted: Thu Mar 10, 2011 11:56 am
by kallis3
I'm sure she won't mind BOL! It's an easy mistake to make.

Posted: Thu Mar 10, 2011 2:48 pm
by langerbridge
Hope you manage to come to terms with diagnosis. There are some really good consultants & sometimes alternative types of treatments help. There are some good support group in the UK as well. MS & ME has some symptoms in common, fatigue being the most. None of us know what fatigue is unless we have one of these conditions.