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Hi, my name is Adiebell!

AdiebellAdiebell Member Posts: 1 Listener

                      My name is Adrienne Lakin, i am 26 years old and have Fibromyalgia.

I started the petition on https://www.change.org/p/uk-parliament-make-fibromyalgia-a-disability, because after being diagnosed with the condition i found that there is not the correct support, treatment, care, or understanding.


When i was diagnosed i completed research and so did my three sisters and mum who also have the condition. I also discovered that there are the same problems  in other areas of the country and problems with the PIP and ESA assessments for people like myself who had lost their job due to the condition, this pushed me even further to the decision that things needed to change. So i compiled all the information together and firstly started the website/blog.http://letsgetfibrointoparliament.simplesite.com/  

Then came the petition and the facebook page.

After just under two weeks it had progressed over 10k and the pages was busy 24/7 so i brought my sister Leeann Lakin on board, the best decision i made even though we have our sisterly spats. But we deal and move on this is not just for us it is for everyone with Fibromyalgia and i hope people will join together and make a stand for other conditions e.g. ME, MS, and so on.

We have met the 100,000 and want to make Parliament listen, as from when they changed the disability act to the equality act they have made people who are eligible for support suffer. We are just waiting for the debate!


This is not just about getting the classification for Fibromyalgia as a disability  it is:

  • 1. It's not just about getting fibro classed as a disability,( it needs to be moved from the impairments list to section / schedule one of the equality act for this to happen)

  • 2. We're here to raise awareness of the condition and the other invisible illnesses and chronic diseases (me, cfs ) as part of our charities constitution

  • 3. IT'S NOT ABOUT BENEFITS OR MONETARY GAIN FOR OURSELVES

  • 4. We want to get better treatment for others like ourselves

  • 5. To educate the wider community and public

  • 6. To banish the stigmas

  • 7. To support others like ourselves through our page and our own community

  • 8. get the help for fellow sufferers they deserve,

  • 10. To get our voices heard AS A UNITED COMMUNITY

  • 11. WE ARE WILLING TO WORK WITH FELLOW FIBROMYALGIA GROUPS AND CHA

  • RITIES TO SPREAD THE AWARENESS AND ACHIEVE THESE GOALS

  • 12. To hopefully assist in opening more treatment centres instead of just the main 2 (in London and Bath) we have in the Uk

This condition has changed my life i used to be a fit active young woman, now i can hardly do a simple task without the chronic pain amd  fatigue.  My home has been adapted to assist me with daily tasks, I am not allowed to work or search for work the job center will not allow me to because of my condition still fluctuating constantly and my medication still changing, I miss working so much, I used to work full time 40 hrs per week for a car insurance company but I lost my Job due to ill health in October 2016.


There is so much that i miss being able to do, I cannot walk for miles like i was able to do, go out into nightclubs partying and drinking with friends. Crowded places sets of my anxiety and I cannot drink due to medication, play with my niece’s running around like “nutter” as my family would say. I used to be able to physically help my family complete everyday tasks if they needed it and complete everything for myself at home as well. But now it is just doing things for myself when i can due to the chronic fatigue and pain. I never used to rely on people for help, I was extremely independent, stubborn but now I have to ask for help, my mum and three sisters also have Fibromyalgia so it’s a struggle for them to help. My Boyfriend Micheal (26) is fantastic we were friends before we got together, he has been so supportive from the start always there for emotional support and to help with tasks such as shopping cleaning or even helping me get in/out of bed or even the shower. There is no one better that i could ask for he is amazing and i love him for all he is. There is also my friend’s Jess, Cara,Bryony and Emily who are all amazing and are always there if i need help. I personally also suffer from Hypermobiliy syndrome, IBS, ME aswell as fibromyalgia.


Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Adiebell   Pleased to meet you welcome.

    Thank you for sharing your story . I am sure all our community who understands the problems you have. Will be supportive.

    Have you seen our posts on Specific conditions. Lots of comments and chat and debates. Plus plenty of information and advice.

    I wish you well in your petition. I know from friends on the community.  What problems and issues they all go through.


    Please take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    HI @Adiebell and thank you for sharing this with us all. Welcome to the community! I hope you find the community a supportive place where you can find other individuals who can relate. Please do have a look around and get involved, if you need anything then please let me know! :)
    Community Partner
    Scope

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