Tuesday, May 12, 2009

In support of Joey.

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May 12 is National Fibromyalgia Awareness Day and it aims to increase awareness of FM and provide support to those coping with the illness.

Fibromyalgia syndrome affects the muscles and soft tissue. The symptoms include chronic pain in the muscles, fatigue, sleep problems, and painful tender points or trigger points at certain parts of the body.

But Joey's illness is much more complicated because of her ME and asthma. Here is her story:

M.E & Fibromyalgia: My Story
I caught M.E after a year of chest infections, I was 18 and working in what I would call my dream job. I turned 19 and suddenly going to work every day was very hard, I used to be a morning person and would get up at 7.00 AM with the plan to cycle to work for 8.00 AM. I then worked until lunch, took half an hour and then went back to work until 4.30 PM. I cycled to and from work every day for about a year. That all changed when I caught what the doctors first thought was flu, I was tired all the time, had severe chest pain, couldn't concentrate and spent most of my time just fighting to get through the day. I was signed off work for three months and only when my landlady told me that if I didn't return to work she would kick me out did I attempt to go back to work. Due to the fact that I been off for so long, my boss demanded a letter from the doctor saying I was fit to work. I had to beg to get that letter because the doctors did not agree that I was well enough to return to work, but I had no choice. I lasted 10 days before they got so worried about me that they insisted I see an impartial doctor who would tell them if I was fit to work or if I needed to be retired on medical grounds. That doctor told me that if I continued to work I would be dead in six months and it was his recommendation that I was retired, so that's what happened.

I then spent the next few weeks moving to my mum's place but she, made it clear that it was only temporary. Luckily, a month later I was able to move in with B, who has since become my carer. I declined rapidly from being able to walk any distance to needing a walking stick to even walk at all. My symptoms were all over the place and it wasn't until B came with me to the doctor and demanded that he refer me to a specialist and give me a wheelchair that I got any help. I saw a specialist when I was 20 and he determined that not only did I have M.E, I also had Fibromyalgia and had probably had both since the symptoms started two years previously. I was put on a mild painkiller to deal with the agony that I lived with every day are referred to the pain clinic. It was around that time that I started the pump for my brittle asthma and so had daily visits from my respiratory nurse. One day when she came round she became concerned because I was a lot of pain and had not slept the night before, she contacted Andrew, who was at the time my respiratory consultant. Although he didn't believe that M.E and Fibromyalgia were real diseases he could tell that some think was very wrong so he told her to contact my GP and tell him to prescribe oramorph for my pain. Since then, I've come off that and are now on Oxycotin every day with another type of morphine to top up if I'm in pain.

The pain clinic were the most unhelpful people I've ever met. They confirmed the diagnosis of Fibromyalgia and wanted to take me off the pain killers and see how I coped thankfully, Andrew wouldn't let them. There is an M.E scale that can tell you how severe your M.E is. 100% is with no symptoms and 0% is basically where Jessie was. When I was first diagnosed I set about 60% on the scale which meant, that although I had symptoms I could still do most things. At 27, I now sit at about 40% which basically means, that I am reliant on a wheelchair and need someone with me to be able to do most things which is where B comes in.

If reading her story has made you want to help spread awareness, then please use the above ribbon and write a post about it, even if it's just linking it to this or her post. Thank you.

8 comments:

Tracey said...

I have done a link to you. Very interesting...
Love Trace xxx

living_with_ba said...

Thanks Odette and thank you Tracey, it means a lot that people want to spread awareness of these conditions.

Amy said...

so interesting...i have also done a link xxxx

Angry American said...

I have a friend named Missi who has Fibro. But, she's also totally crippled, almost litterally from head to toe with JRA (junior rheumatiod arthritis). By age 18 she was already using a wheel chair almost full time.

One day, at age 18, she stood up and fractured her pelvis in over a dozen places. She never walked again. Her bones were brittle and she had stomach ulcers from all the asperin her doctors had her take.

We went to high school together but I don't remember seeing her there. I had seen her once at the local roller skating rink and a couple times at the bowling ally.

Back then, she was still walking but used a wheel chair once in a while. Her fingers and feet never grew out and her spin and jaw were already deteriorating. Now, she can't open her mouth very far or turn her head left or right much.

She's 42 now, and has been on pain meds just for the JRA for about 20 yrs. Percs (don't know how much), Hydrocodine (750 mg) and some days both. Percs to help back up the other when it doesn't work. If she misses one dose, she has to double up for 12 hours just to catch up.

She found out, a few years ago, she also has Fibro. She gets brain fog and Fibro fevers. JRA causes fevers too, and some days she gets both at once. Sounds imposible to me but wtf do I know? lol

I practice energy healing using Chi Gung (Qi Gong) and she was kind enough to let me get real world experience by helping her. Some days all the techniques I use won't touch her pain. Chi gung masters will tell you you'll have to learn to improvise. If I've learned one thing helping her, it's that, your damn right you better learn to improvise.

Treating her arthritis pain can be challenging enough. But, Fibro is the FREAKIEST thing I've ever worked with. At times, it's almost like it plays games with you. I relieve pain in one spot, and it moves to another. I work on that spot, and it might go right back where it started.

Not only that, I sometimes use massage (you better be very gentle on tender points or the person will jump through ceiling) to help me pin point problem areas. The problem is, the affected tissues may not even have knots or kinks. But, they will still give off unhealthy energy as if they are imflamed, swollen and on fire.

Like I said, very freaky. Missi's friend has Fibro too and, no other problem I've worked on, not even fevers, are as crazy to deal with as Fibro. I've seen what it can do in a VERY short time. We're talking about going from being able to walk to using a wheel chair most of the day in a couple of years.

I know all about Fibro being miss diagnosed or passed off as psychological. Missi and her friend have told me several stories. If I ever hear somebody say that Fibro is "all in their head" or it's only Chronic Fatigue Syndrom, I'm gonna rip then a new one. Double if it's a lame ass, know it all doctor.

As somebody who has used energy healing on Fibro for a few years, I can tell you it's NOT fake and it's a new adventure every time. There's no "Standard Procedure" when working with it. Many times, you just have to improvise.

Odette said...

Tracey, Amy,
thank you for spreading the awareness.
hugs!

Odette said...

AA,
thanks for giving us the real picture of the sufferings of those with FM. there seem to be no cure for it, but just pain management...

Tracey said...

Excellent response from the AA! I was totally ignorant of this illness, but thanks to you Odette (and Joey) I am now aware.
xxx

Odette said...

Tracey,
wait till you read his comment on Kirst post, hahaha!

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