FIBRO FOG AND MENCAP

by Jeanne Hambleton ©
NFA Leader Against Pain-Advocate

Many of you will already know what I mean when I say I have fibro fog – it is a sort of forgetfulness. I go to the kitchen cupboard for gravy granules and find my slippers. I know only too well they belong on the bedroom and usually have no recollection of how in the world they got there.

Yes you could say I am potty or even out of my tree. You might also say I am experiencing learning difficulties. Regrettably cognitive behaviour or misbehaviour is one of the many symptoms of fibromyalgia.

I have two sons and I am constantly calling each by the other one’s name. As you can imagine they get quite vexed with me. In fairness both of their christian names begin with a G – that is my story and I am sticking to it.

I want to ask for something to be moved and I cannot think of a simple name like ‘the armchair’. It can be most frustrating but also rather amusing for onlookers.

I have just had a nasty accident resulting in three fractures to my hipbone. While writing to friends explaining I am on crutches instead of saying I have damaged the pelvic and pubic bones, I writing about my public bones. Why my hipbone should be a public bone I will never knew.

I recently wrote to a dear friend who had an ear operation and I started my letter “ear Joan.” Fortunately she saw the funny side of my fibro fog…..

Yes I must be out of my tree. Due to these rather alarming and sometimes funny incidents, I do have some empathy with those who have learning difficulties – those who rely on the Mencap charity to help them. However I did all right with my education and came away with several bits of important paper. I am not going to tell you what passes I got – I will leave it to your imagination.

However all this nonsense brings me nicely to an invitation I received from David Head. He wrote as a comment on one of my stories and said,“Would you be kind enough to consider being one of the first bloggers to take part here: http://mencap.wordpress.com/ 4 down, 997 to go!”

Being a nosey journalist I could not keep away, could I? I thought there might be a story in there somewhere and there was.

David wants to raise £6,000 for his Mencap charity event and he had this great idea of inviting 1001 bloggers to donate £5 to the charity using justgiving.com in return for a window on his charity wall.

A very ambitious idea and in a short time he had 4 bloggers and now he has 6. The only problem I found was the time it took to open the website but it is worth waiting – leave it ticking along and do something else for a minute. David and his wife Angela are trekking in Peru in May next year as part of his major fund raising for this charity which he has helping for some considerable time.

If you want to see how David is doing you can log on to

http://mencap.wordpress.com

and log at the very first window and maybe make a donation, whether you want to blog or not.

David’s blog tells us, “The idea is that any blogger can donate a fiver, and can get a link on a page together with 1000 others. It’s a great fun thing because we will promote the page once we get the first few bloggers signed up, and visitors can click on random links, or choose a mini-image that takes their fancy, and be off into the blogosphere. In the meantime, my theory is that 1001 bloggers, all donating a fiver, is £5,005. Cool.
“As ever, all this money goes DIRECTLY to the charity Mencap. Using justgiving.com means that I don’t have to handle the cash or take peoples card details. It’s direct so people know the money is definitely going to the charity. It’s sad, but sometimes there is scepticism about online fundraising, so at least this way people will know their money goes direct.”

I hope he does well for this worthwhile charity. Everyone needs a little help from time to time and especially those with learning difficulties. I am sure you agree.

As my wordpress weblog is 77 I have taken two windows. The first one is number 7 for my fibromyalgia weblog and another for news of the new self help book I am editing and writing about FM. This has 24 in the title, so I have opted for number 24 as well athough it reads 77…all a bit double dutch. I hope to have news about the book in this window after Christmas.

My whole life was change by fibromyalgia – like anyone with this rotten invisible disability. As a consequence I was determined to raise awareness. I was tired of people saying they were sorry I was ill and what was wrong with me. When I said “Fibromyalgia” they would look deep into my eyes as if to say, “How long have you got,” thinking to themselves I was about to die, and then say “Fibro what?”

As those suffering with fibromyalgia will know we do not directly die from this awful syndrome – so called because it has so many symptoms and many disabilities cohabit with fibromyalgia. Instead we live with the pains and chronic fatigue for our lifetime.

Having said all that, our weakness is without a doubt our compromised immune system. Also woe betide you if you catch something nasty that attacks that system.

Last year the first death attributed to Chronic Fatigue Syndrome was highlighted in the press. Yes we fibromites know all about CFS as it often overlaps with FMS. This dear lady had some disease which attacked her immune system resulting in her death. The verdict was that her death was caused by whatever but that it was attributed to CFS.

For those who do not know, CFS is when you get half way up the stairs and tell yourself that if you reach the top you are never going down again. You are afraid to walk to the shops in case you cannot get back. I find this bad fatigue comes over me in waves – often unexpected and very debilitating.

But like all these irritations for the want of a better word, you learn to live with them. You can sit and feel sorry for yourself or you can get on with your life, pace yourself and be a half-a-day-gal. If you use your energy in the morning, make sure you sit in the armchair and rest in the afternoons or you will be in bed the next day.

Remember to keep this in mind over the Christmas holidays. Take all the help you can get. If someone offers to do a small job for you, jump at the offer and say very big thanks so they know just how much it means to you.

It is now only about 35 days to Christmas. I hope you have dispatched a willing volunteer to do your seasonal shopping – cards, wrapping paper, gift tags, gifts and some of the goodies we love during the festive season.

Take care of yourself in the run up to the Christmas holidays or you will not last until New Year. Talk again soon. Jeanne

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2 thoughts on “FIBRO FOG AND MENCAP

  1. I hope you are recovering from your accident. I am not sure that 10 times ‘normal’ recovery time is strictly true. If that was the case, as a fibromite, I will take ten years to get over my knee replacement, whereas, in reality I am recovering normally. It has induced a fibro flare up though…although not immediately. The immune system thing is worrying though isn’ it?
    I will add your blog to my blogroll. It’s good to find another fibromite.
    Take care, Susie.

  2. Hi Susie – Thanks for the good wishes. I guess I must agree but it was still a bit of a concern at the time to think it would take longer to recover.
    Glad your knee op is mending well. Hope you are enjoying reading the ramblings of another fibromite.
    Take care and get well soon.
    Jeanne

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