Drug makers’ push boosts ‘murky’ ailment – Part 2

From the FMS Global News Desk of Jeanne Hambleton
To the Editor of Associated Press and Business Writer Matthew Perrone

AP Associated Press IMPACT:
re: Drug makers’ push boosts ‘murky’ ailment -Washington on February 8 2009

Dear Sirs,

I read the article and then I was so angry wrote this….

Before I was told I had fibromyaliga I was an auxillary nurse and very active in everything I did. Then one day while at work I started feeling ill and my body hurt so badly, within a few hours it actually made me pass out. I was sent home and the next day felt so ill I booked an appointment to see the doctor.

The doctor sent me to the hospital and I had all sorts of tests even for Aids, all the tests and a lot of other things. The wait for some of them tests was so scarey and took a week – so it felt like forever. I have been pulled and pushed and then told I had a condition called fibromyalgia, of which I knew nothing. Then after that more things to try help sort the pain out…

I am going to now tell you what it feels like for me two have this. I am on a lot tablets including morphine. Some days i cannot walk down the stairs, let alone get back up them. I cannot bath on my own without my husband being there. My children have to finish brushing my hair sometime because my arms get heavier and heavier. That is my children doing this for their mum. It should be me looking after them.

Even with the silly pills I am in pain. Do you people think I like being like this? This pain I feel hurts so much it stops me from doing the things i love and used to love.

It is downgrading for me as a human being to be like this. Do you people not realise that most days I wonder why I just do not end my life as I cannot do the things I used to. Yeah that is what this makes me feel like saying right now.

I was so well and loved life until I got this condition. It is not right for people to say its NOT REAL WELL LET ME TELL YOU!!!! I would not even wish this on someone just so they experience the pain of someone with fibromyalgia; even just to get people to say, ‘Hey they are not lying. It is not in their head. Oh God, we are sorry it real pain these fibromites feel. Okay we are going to help.’

Do people like you not understand what it is like to be called a liar and told OH IT IS IN YOUR HEAD? Do you not know what it feels like for people to disbelive what we go through?

That article is so wrong, so very wrong. Instead of criticizing people with this condition why can’t someone create a bloody cure? Then I would love to go back to being pain free and looking after old people. I would love to go dancing and drinking and out with my children and play with my grandchild that is due in August.

Do you people not understand that when my grandchild born I might not even have the strength to hold that baby? Do you know how that feels? Do you not know how it feels being unable to hang your own washing out or finish cooking a meal or getting a drink? If this is not bad enough for us what about our families who have to see us struggling most of the time or when were having a bad day? What about them seeing the one they love in so much pain? My husband had to sit there watch as I scream with pain and begged him to help me but he does not know how? He has to carry me downstairs or upstairs just so I can use the toilet. Don’t you people understand that we do not like being like this? The pain is so bad sometimes. What do we have to do to make people understand and help us for God’s sake….

Donna Weetch of Portsmouth Hampshire UK.

Editor’s Note: We know we must endure the pain as there is no cure and no Government funding for research in the UK, but if only people understood, if only there was more public awareness- if only more GPs and doctors had been trained with knowledge of fibromyalgia – if only….

We will continue to try to move mountains, seek donations and raise funds for our own research programme and one day – I promise Donna – there will be a cure. Think positive. It can only get better.

If you, the readers, have any bright ideas or want to donate to our funds for research, write tome. Jeanne -fmsglobalnews@me.com

About jeanne hambleton

Journalist-wordsmith, former reporter, columnist, film critic, editor, Town Clerk and then fibromite and eventer with 5 conferences done and dusted. Interested in all health and well being issues, passionate about research to find a cure and cause for fibromyalgia. Member LinkedIn. Worked for 4 years with FMA UK as Regional Coordinator for SW and SE,and Chair for FMS SAS the Sussex and Surrey FM umbrella charity and Chair Folly Pogs Fibromyalgia Research UK - finding funding for our "cause for a cure" and President and co ordinator of National FM Conferences. Just finished last national annual Fibromyalgia Conference Weekend. This was another success with speakers from the States . Next year's conference in Chichester Park Hotel, West Sussex, will be April 24/27 2015 and bookings are coming in from those who raved about the event every year. I am very busy but happy to produce articles for publication. News Editor of FMS Global News on line but a bit behind due to conference. A workaholic beyond redemption! The future - who knows? Open to offers with payment. Versatile and looking for a regular paid column - you call the tune and I will play the pipes.
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