reply to Bryan and everyone else too

Posted , 7 users are following.

Hi, I haven't been on here for quite a while as I haven't been up to it.  I've just got up after a nasty bout of vomiting yesterday evening, which wiped me out completely.

Firstly, I am so sorry to hear how ill and exhausted you are Bryan, this is one horrible illness isn't it.

We all seem to have contracted M.E. in the first place, after some form of illness, and I find it extraordinary that more and more people seem to be getting M.E.  It's scary really, and often makes me wonder if there's something else to do with it?  Sometimes i wonder if there's some form of germ warfare, I know that sounds ridiculous, but in these scary times, you never know.  I only thought of that, because when i was growing up in the 1960's, you never heard of people having to give up work through exhaustion - it only seemed to turn up more, in the 1980's, maybe i am wrong?

As for forgetfulness, I was so bad i thought I had an early onset of Alzheimer's - my grandmother had it you see, so I know how it effects someone.  But then I was advised by an online Thyroid association to have my B12 checked.  My consultant at hospital sent me for a blood test, but wouldn't include the B12, so i just ticked it on the form myself!!!  Hey presto, I am dangerously low in B12, and started having B12 jabs every 12 weeks exactly a year ago.  They really work, and at least I have some of my brain working again!!!!

I am so lucky that an M.E. clinic I attended from 2012 to 2013 was superb.  I couldn't go to all of them, but the ones I did attend were really helpful. They taught me to pace myself - which is SO difficult when you live alone, but I do it when I can.  I've since also been diagnosed with a hiatus hernia, so am limited with exercises i can do.  I have put on 5 stone over 5 years, and it's all because I often have to stay in bed or lie down.  I can't walk very far, and get ill every time i have to go out anywhere.

However, my GP surgery put me forward to see a health trainer on a one-to-one basis.  He has helped me immensley - all for free.  My GP has recommended light exercises I should do, but of course, they are few and far between because of feeling so exhausted doing the slightest thing.  But I try whenever I can.

I also bought myself an exercise bike a few weeks ago, and as soon as someone can help me put it together (I got it off a catalogue and they sent it in pieces!!!)I will attempt to use it to try to strengthen my legs.  I've had 'treacle legs' since Monday, so can't even walk at the moment!!!

It's a long hard struggle, but I live in hope.

Thankfully, I received a DWP letter last weekend and have passed the medical to go on to the Support group of ESA - Yippee!!!!  I am over the moon as i can now relax and get on with trying to get better - if i can?????

I hope you all find a good M.E. clinic like mine, and help too from a health trainer at your surgery.  The nurse at my surgery put me forward for the health trainer.  Maybe you could enquire with your GP?

Best of luck to everyone and I hope that there is some sort of cure - or prevention soon.  I just want my busy life back and would dearly love to be able to work again - I truly miss the cameraderie from the work place, and the company too, even though a few places I've worked have been awful with bullies, but overall my career has been working with some lovely people, and I'm sure they still exist somewhere???  LOL!!

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  • Posted

    Hi Longtallval and others, too.............as once again I'm still of the mind that CFS, ME and Fibro are all different conditions, with some overlapping, I will not add too much...................just the bit re "wanting to get back to some form of work", as this is what I really miss, and as it has been said , the camaraderie and socializing.........the misunderstanding of these conditions, limitations and isolation are Very hard to take/live with....and I do feel very sorry for those who live alone, and would not see anyone for days.............this I would find very hard, for I do still have my family near by, and see my husband daily (now that he is home after having his accident), and children drop in...........and as also mentioned with xmas around the corner, this will be a very hard time for those alone....it is a pity that we are not all in same area to be there for each other at this time.............but please remember, for those who do not have family, I for one, will have you in my thoughts............xxBron

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