My story…

…well, a little of it.

fibro definitionAt the start of 2007 I was a special needs primary school teacher progressing steadily in my career, I had another permanent contract, was coordinating the arts throughout the whole school, running a project with special schools in Germany and Slovenia and had successfully taught abroad and done masses of travelling. Admittedly all this meant that there was too much stress at work, but that’s the teachers lot these days so you just buckle up and cope.
My immune system had finally gained strength after a bad patch that had started on my return to the UK from working in the USA, that was until the winter of 2006 when I was laid low by a couple of viral infections.
In February of 2007 I started to feel run down again, achey and like the flu was looming, my waist was sore too and when I investigated I found some small blisters…a visit to the GP confirmed my worst fears: shingles.
I’d been critically ill in my mid twenties with chicken pox so knew how badly my immune system coped with the wretched herpes zosta virus and it wasn’t until after the Easter break that I was able to return to work. On the Sunday before I went back to school on the Monday, I’d noticed how sore my ankles and knees were, I had difficulty bending, but I put this down to my increased exercise after a period of illness.
By the Wednesday morning I was finding it increasingly hard to walk. A PE lesson I led that morning was hellish because I couldn’t demonstrate anything to my pupils at all. I got an emergency appointment on the Thursday morning, came into work, told my boss, left for the doctors around 11.30am…and never returned to work again.
Ever.

It took two years until we managed to figure out a medication regime that got me walking again and managing more than 30 minutes of sleep a night.
(During this time I did a pain management program…tussled with occupational health, the union, the teachers pension people, various benefits agencies…but they’re stories told elsewhere or best put to rest.)
One day everything seems fine, the next your world crumples and you’re left learning to cope with an incurable and invisible illness that some fools in the medical community still think is psychological. Yes, there are medical professionals that don’t keep up to date with research, so this is where charities like Fibro Action are invaluable.

Surfing the Fibro hashtag on Twitter yesterday I noticed that the Fibro Duck charity had some new posters etc available, including a symptoms word search! What a great idea 🙂
I also found a helpful blog where the blogger has taken the time to collate all of the myriad of symptoms linked to fibromyalgia. As it stands, she has a PDF that lists TWO HUNDRED symptoms. Yes you read that right; 200. In Emily’s own words:

“Fibromyalgia is a syndrome with many symptoms. Each individual with Fibromyalgia will have some of the symptoms. A few people will have all of the symptoms, but not everyone with Fibro has the same symptoms or even has symptoms all of the time. Also, symptoms may vary from day to day, year to year, or even minute to minute for each person coping with Fibromyalgia and other common coexisting conditions as well.”

Yes, fibro loves company and is frequently not the only illness present. A dear friend of mine is currently battling the following along with fibro: MS, diabetes, coeliac disease and cancer of the lymph nodes.

Emily goes on to point out;
“these symptoms are not meant to diagnose! My purpose in compiling them is to help people be more aware of what people with Fibromyalgia may be dealing with at any given moment and to help people with Fibro track symptoms, so that you have as much information as possible for your doctor to help you.”

may 12th blog bomb hashtagToday is fibro awareness day, (along with ME/CFS and iirc lupus. There may be others, it’s sort of invisible pain and fatigue illnesses day…) all spoonies around the world would be massively grateful if you could take the time to read the information that the links below lead to, even if it’s only one of them.

  • Fibro Action: a charity that helps raise awareness and will help you to keep up to date with current research.
  • Fibro Duck Foundation: a humorous approach to awareness that also has awareness raising at its core and is where you can find the symptom word searches.
  • Inspired Living with Fibro: the blog where you can find the list of 200 symptoms.

I have a couple of posters, cards and tees etc available in my Spoonie Store that list symptoms too. My royalties are set very low so that people can afford to buy things, but what little I make I donate most of to fibro action using Ploink.
Here’s one of the designs available, click the image to see more.

Many thanks to all who’ve made purchases. Your help spreading awareness is MUCH appreciated.

fibro t shirt

Click to see other items, including bumper stickers and cards etc.

email

8 Comments

  1. Sand, thanks for sharing this super important and poignant story. I am so sorry about the circumstances of your illness, and wished it were easier for you.

    Like I have told your before, you are indeed a trooper, and it is an honour being your friend. 🙂

  2. Kathleen

    Sand, thank you for rising above your pain in so many ways and being such a great part of our little CCY community! And for speaking out to raise awareness of this syndrome, which the medical community is so slow to acknowledge and support. Hugs and warmest wishes, Kathleen in NY

    • Thanks lots for stopping by and for your kind words Kathleen, much appreciated.

  3. Oh Sand, I know this is a drop in the ocean but people like you, raising awareness make things change. Kudos to you, I can’t possibly imagine how it is to walk in your shoes but I do know, it’s horrible, to say the least. Like Sandy says, you are a trooper and I can only wish you all the best.

    • Thank you, each person that reads or shares helps to add another bit of karmic positivity into the universe, so your support and understanding are very much appreciated and treasured. Thank you <3

  4. Andrea Weber-Lages

    All the best to you, Sandra, I didn´t know anything about this disease before I met you and Elke. Thank you for telling me more about it so I can (just a bit) imagine what you two are dealing with…

    • Thanks ever so much for reading and taking the time to let me know Andrea, its lovely folks like you that make life bearable. Hurrah for the internet and the support it provides. <3

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