F IS FOR FIBROMYALGIA

by Jeanne Hambleton ©

Hello. It is me again, waffling on about fibromyalgia and this and that.

This morning I am feeling very up beat as I now have three new friends or maybe even four? I have received lovely emails from fibromites including an invitation from a lady called Kathy to visit Arizona and stay with her. Elle has written to me from Playa Blanca to say, “I remember these rains you suffered. Our electricity was blowing every half hour whilst it was all going on grrrr!”

So it really must have been the worst weather in 20 years. Apparently now the weather there is a “scorchio”. Elle said she enjoyed reading the holiday article but I wonder does she have fibromyalgia?

Pamela, a journalist, has written from the Canary Island of Tenerife to say it is cold where she lives in the north of the island. Houses are built for the heat, not the cold, and have no heating. She says around 35,000 people on the island suffer with fibromyalgia which is not recognised for disability or benefits. The island’s population is 852,945 (2006 census) according to Wikipedia, so if this is about 2.5% (I hope that is right) – it is more than the 2% in the UK. Sorry but maths never was my strong subject – too busy flicking ink pellets at the boys in maths lessons. It is all coming out now – warts and all – WYSIWYG!

Born in the UK, Pamela, who is a journalist, still believes she is better off living in Tenerife, even though she wears four layers of clothing in the winter. She believes she could not survive the UK cold winters. I must say I am beginning to think that way too.

Kathy who is another writer, said, “I blog but don’t write professionally anymore, because my fibro is too severe, but I read about you looking for a place without rain, etc., so I wanted to write to let you know about the state in which I live, Arizona. The winters are mild, and so there is no snow, although it has ‘snowed’ twice since I’ve lived here for the last 27 or 28 years, but it was only for a few minutes.

“So if ever you decide you want to ‘test’ my state, please do let me know, because you are free to stay with me, although I don’t know if I’d be a very good hostess since when I’m in a flare, as I am now, I can barely care for myself.”

My new friends wrote to sympathise with the 10 days rain and 4 days sun I ‘enjoyed’ when I last had a holiday in the Canary Islands…global colding I called it.

I will write to my newfound friends but I would like to say here that I believe friendship springs from fibromyalgia. Thanks to Pamela, Kathy and Elle – it was good to hear from you.

Also had another contact from Pauline who is trying to raise awareness about FM with her local TV station. Good luck with that. It is good she is spreading the word.

Contrary to public belief, we fibromites are no different to other folk, except maybe we hurt a lot more and perhaps grunt and groan a bit when we try to get up from a chair. Most of us have given up tennis, jogging and running marathons but some claim to be okay at cards, chess, in the casino and other less strenuous pursuits.

We still have families and kids with husbands who either stay the course and understand or others who just do not have the stomach for it and cowardly walk away. Perhaps I should explain that people who are diagnosed with fibromyalgia are usually women although children and men are diagnosed with FM. Fibromyalgia strikes high achievers, super mums, workaholics and those living with constant stress overload. I fall into most of those categories – I love my work. I was a high achiever and was always very ambitious, meeting deadlines and looking for the front-page scoop. But I like to think I was a super mum too – but you would have to ask my children about that. Suffice to say – our lovely kids are all employable, do no take drugs, are not violent, respect their elders, and are none the worse for the discipline we imposed on them. Sorry I am getting all sentimental now…. must move on and not be a family bore.

But many of us who have all the problems associated with fibromyalgia – and I will not bore you with the list – would give their our teeth to be normal like other folk.

My mind is wandering off and I am visualising lots of people with gaunt drawn in faces, no back teeth, and others pointing and saying, “Look at their faces, they have got fibromyalgia.” Well there is one thing – fibromyalgia would not be invisible any more and we would NOT look so well.

(If only I could paint a picture!) But at least that would do something to raise awareness even though we would all have indigestion from not chewing our food properly. What do you think they would do with 35,000 pairs of eye teeth on the island of Tenerife? The mind boggles.

Sometime ago a sick young lady, fed up with her isolation, depression and fighting the battle, threatened to have the word ‘fibromyalgia’ tattooed on her forehead. I wonder if she did it? People have tattoos in the oddest places these days – not that it appeals to me. It doesn’t wash off.

Might be great to have the word ‘fibromyalgia’ on your butt. If it is one of those days when you have a headache (and we do get a lot of those) you could just roll over, reveal the word and your partner would get the message, without you having a crossed a word.

You could have this message on your butt – F is for fibromyalgia – but that would take a lot of space and might be a bit cheeky –ooh, excuse the pun!

In days gone by if you had something wrong with you and if you were a leper – you were an outcast and shook a bell to let everyone know you had something wrong and you were contagious.

Well fibromyalgia is not contagious – you cannot catch FM– so you are quite safe if you are not one of us. However you can get “catch” it (I should say trigger it) if you ignore the stress overload in your life.

I strongly believe my fibromyalgia was triggered by a very stressful job. After a major show down with my numerous bosses, oddly enough on 5th November (I refer to it Guy Fawkes plot) I became immediately ill with what the doc said was a “virus”. After a month that “virus” became a “post viral infection” and then “stress”. This was the name on my sick note when I reached rock bottom and had my melt down. I could not walk –I am sure my legs belonged to someone else – and boy did I feel sorry for myself.

I claimed my family were thinking, “What are we going to do with her?” No one mentioned wheelchair but I could feel that conversation coming.

This is ridiculous I thought. I have always been a fighter so why should I give in now. I was referred to a specialist, for which I paid consultant’s fees. But he got it in one. After lots of drawing on bits of paper illustrating the pain chain which goes around and around, he told me I had fibromyalgia.

What a relief – I am sure those of you who have been diagnosed know the feeling. I was going to live. Fibromyalgia does not kill you…I have since discovered that if some deadly virus or bacteria attacks your immune system, you can die “indirectly” from fibromyalgia. Last year a lady with CFS died “indirectly” from her disability when something nasty carried her away. But for now we will all live with the FM pain and chronic fatigue for the rest of our lives.

The specialist also suggested, when I asked for more information about this condition I had never heard of, that I go to libraries and the Internet. He recommended I should not join any support groups as these were all doom and gloom. I will always be grateful to that specialist for telling me I would not die from what ailed me, but his advice about the group was certainly not good advice.

So now what was I going to do with my life and the invisible disability – yes I looked very well – but felt so urck! By now I had lost interest in writing and was devoid of ideas (fibro fog). Call it coincidence or an act of good faith, but a former colleague rang me, said they were in trouble and needed someone to minute a meeting. Could I possibly help? I said yes without another thought.

I found something nice to wear, added a bit of paint and powder and tousled my hair ‘exclusively’ as they say, and I was away. It was the step forward I needed. I began writing again and I carried on doing work for my friend. I was back at the computer and the keys were on fire. I joined the Surrey & Sussex Fibromyalgia Support Group (www.fibromyalgia-south.com) and found help, advice, and relief. I was able to talk to people about my pains – people who understood – folk who had been there, done that and even got the tee shirt. Not only did I get tea and sympathy, but also help was always available.

This strong bond of friendship can become a way of life and groups all over the world reach out by telephone or email to those with FM who never leave home. They offer companionship and a new look at life for some who had almost given up. Going to the meetings can become something you look forward to – reading FM books from their library – hearing medical speaker – ringing the helpline to find out if the pain you have is something to do with fibromyalgia. You have nothing to lose except perhaps some pain.

My advice is go for it – even if you only get a magazine, access to a helpline, free advice and medical information – this is the way to gain knowledge about your condition and find out who are the good doctors in your area. You might even do some fund raising for your group or write to your MP or Senator about funding for research. If there is not a group where you live and you have friends who are disabled or have fibromyalgia, start a group Why not meet once a month in someone’s house for coffee.

Unlike my doc (who obviously does not know everything) I highly recommend joining an FM group. Consider this – I have found new friends by just writing about my fibromyalgia. It would be even better if we were able to lunch together.

For me joining the group has been great – I write for their bi-monthly magazine and sometimes subscribe to their website… we all do. I have even been involved in organising a charity skydive by a fibromite and a very nervous flying teddy bear, and this raised over £1,000 for the group. But that is another story that I might tell you sometime. The teddy bear, now sitting on my desk in his flying gear, is called Groupie. A delightful little bear, a bit tatty, but with a heart of pure gold.

Will talk again soon. Jeanne

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