I often read about how people suffer in different way swith fibromyalgia. There is no quick fix and no easy way to describe the illness. Quite often exasperated friends and family, through frustration and inability to comprehend, scorn the sufferer who appears lazy and lethargic. That is not going to help the already low self esteem and confidence.

My kerplunk analogy has helped Laura explain her illness to friends. But she also put her illness to music, as a poem, and it's proving very popular on you-tube.

Here, Laura describes herself and coming to terms with her diagnosis.

Hi, my name is Laura, and I’m 28. I am a Mum to 2 beautiful children, a Wife, a house-keeper and for the past 2 years, a mature student. Last year I studied Beauty Therapy, and this year I have specialised in Nail services.

I am currently fighting for help and a diagnosis for my 7 year old son, who has language, visual, educational, emotional, social and behavioural problems. And I enjoy seeing my 5 year old daughter flourish in her dancing, cheerleading and gymnastics.

I also have Fibromyalgia.

I know that I do not suffer as much as many fibro-mites I know, but we can all have our days which create a dawn of realisation. This day came to me while I was stood, attempting to wash up. The previous night, I was trying to explain to my husband, why I ask for help. Because while I know he doesn’t think I take advantage, or am lazy, I still feel he doesn’t fully understand why it seems I do so little around the house some days.

We have had a lovely festive period, with me cooking the Christmas day meal at our house for the first time ever, Boxing Day party at my mums as usual, our godson’s birthday on the 27th, my husband’s 30th birthday on the 30th December, and then a friend’s house party for New Year’s Eve. I could feel myself drowning at the NYE house party, but as soon as I woke up on the 1st January, my body had totally given up. I have since not been able to get out of bed before 10am, only been able to make a brew before lunch time, and have not left the house for days!!

By the 4th I was stood at the sink slowly working through some plates, when I suddenly realised a way I could communicate to my husband/mum/grandma, and even possibly, just maybe, friends, on how I feel when the fibro really takes hold.

Words were flying round my head, rhymes were popping in and out, and suddenly I got a title.

2 hours later I had a finished poem I was ready to read out to my husband and grandmother. Reading it out loud for the first time was very emotional and I found myself in tears barely into the second verse. My hubby stopped what he was doing and came over to rub my shoulders, and even my gram needed a tissue (she very rarely shows her emotions). Once we had calmed down and the kids had distracted us all from crying, I began to think that this should be shared with more than just family and friends, and posting it on Facebook would be a great idea. But a simply copy and paste would prove difficult as it was too long to put as simply a status and many would just not read it. I know I skip past many of them long reposted, copied from friends, put this as your status for an hour type posts. So I began to create a YouTube video.

Using built in software to create videos like a slideshow, I found it easy to put the poem together, and after searching for the right song, my husband found a perfect number. Within 6 hours of reading it out for the first time, it was online. I posted it all over Facebook, to all the groups and pages I could find that were Fibromyalgia related. I got an overwhelming response back from people saying how they loved it, cried at it, related to it and how they were reposting it for their friends to see.

"Hi my name is Lisa,

 I am 29 years old, it's taken me a bit of time to summon up the courage to start writing this blog so here we go. 

My problems started in 2003. I had just got out a nice hot bath and I'd come down to the living room. My sister was visiting. The last thing I really remember is sitting down on the foot stall and I just passed out and ever since then i have been in pain.

My parents took me to the hospital where I spent a few days. They couldn't find a cause for what had happened and said it could go as quick as it had come. That would have been really nice!

 From then on I was in and out of hospital. I had so many different tests from blood tests to MRI scans and  CT scans. For one test I had to be sent to a different hospital as the one I was in didn't have the equipment needed to do it.

The doctors would come and see me and act like I was wasting their time. They didn't talk to me; they talked over me to their students. In 2007 one of my doctor's at the surgey I go to ordered another ultrasound scan and that showed I had gallstones and that I needed my gallbladder removed.  For a while everything was great. I went to college and started university to train as a nurse. Sadly the renewed health didn't last long and by the end of 2007 I was in hospital again with pain down the right side of my abdomen. It was like starting all over again. I was then readmitted to hospital in March of 2008 but by being in hospital I missed a maths exam.

Soon after I recieved a letter from the university saying that they were removing me from the course and that I could appeal against the decision.  I did  appeal but  two weeks later I received a letter saying that I  was being removed from the course due to my health.  I don't think I cried so hard in my life. Even now as I write this I am crying for the loss of the career I loved. 

I got sent an outpatients appointment to see a surgeon.  I was ushered into his room and as he wasn't there yet I carried on the conversation I was having with my mum. He overheard the words “ADHD”. After he heard that word he decided that all the pain was in my head so he was sending me to see a psychiatrist. The one I saw was lovely and said that the pain was not in my head and he referred me back to my doctor. A week later I recieved a letter from the surgeon saying that the reason I was saying that I was in pain is that I have ADHD. The next time I saw my doctor I showed him the letter , explained what had happened and it was removed from my records.

In the last two years the pain has got increasingly worse. On top of that I was finding everyday tasks really exhausting and even though I was getting some sleep I still felt tired. When this started happening I went to my doctor and said to him do you think I might have ME?  At that time he dismissed  it and said it could be anything. So after he told me that I thought I was going mad. Here I was, in all this pain and also permentaly exhausted. By the end of 2009 I was finding things like washing my hair own hair really difficult. It is hard for two reasons; the first was because of the amount of pain I was in; and, the second was my arms would become so tired that I couldn't hold above my head.  In fact I still find washing my own hair difficult.

By the middle of 2010 I went back to my Doctor and explained what had been happening. He finally said it sounds like you might have ME and he referred me to a specialist. It was March of this year I went to a group presentation on ME and it was so nice being in a room with people like me and also people who understood how I felt and everything just clicked into place. At the end of the presentation we were given the choice to stay on the waiting list to see a specialist or say no further action needed. Those who decided to stay on the waiting list were warned that it would be a long wait.

It was four months ago I had to go back to my Doctor as I had got to the stage were I could not walk for longer then 5-10 minutes because of the pain. Also I  was exhausted and no matter how hard I tried to push myself I couldn't get much further. So I asked my Doctor if I could use the wheelchair that was in my shed from a previous accident so I could go out.  At the same time I asked if it would be possible to have a chair that I could power myself.  He was ok with the one that needed someone else to push it and said he would write to occupational therapy for the self powered chair. The reason I asked him about a self powered chair is because being 29 I wanted the independence to go out on my own. Also both my parents are over 65 years old and they find pushing the chair a struggle. Just over a week later I got a phone call from an occupational therapist and it turned out that he had said “no” to the self powered wheelchair because of my age.  But he did ask them to help me out with bits in the house to make life a bit easier for me. Not long after he had said “no” I went to see some disability advisors and explained what had happened. They could not understand his reason for saying “no”. The advisors were really helpful and they suggested that I get a mobility scooter. I got this just over three weeks ago.
Even though I have this scooter I still try and walk as much as I can. Having the scooter has enabled me to go see friends, go into town on my own an it has been great.

I also suffer with migraines which is down to the Fibromyalgia. One migraine I had was so bad it landed me in hospital for three days. The medicines I take at the moment are oramorph for the pain,amitriptyline for the headaches,gaviscon and lansoprazole for the hiatus hernia. Just recently I was put on some new anti-depressants. It was the day my Doctor phoned me because the pain had got real bad. He said to me that because I had Fibromyaglia and ME I would have periods when the pain did get worse it was a huge relief . Finally I  knew what was wrong and as silly as it may sound it was a huge weight off my shoulders. Finally when people asked I could say its Fibromyaglia and ME instead of saying not sure what is wrong, we still havent found out yet.

All this leads up to where I am now.  I'm still in lots of pain and I'm still exhausted but I am determined to make the most out of life and along the way I will write about about the good days I have and also the bad days."

A big thank you for that quite harrowing blog Leigh! 

I think it is great that people can write their experiences, their treatment, thier whole process and life perspective. Now you all know why I am so passionate about people with this awful confiton. Imagine being ignore or fobbed off by not just the medical profession but also your own friends and family. Ignorance is not bliss..it's a real pain in the proverbial if you suffer with Fibromyalgia.