It's so important to continue to raise awareness of the invisible illnesses, because it often feels (to me) that there's very little support or research being undertaken to gain a better understanding of the causes, and subsequently cures for these miserable illnesses.
I hope that's just my perception?
What I'd like to do with this Blog Bomb, is catalogue some of the resources that are available to help sufferers of Fibromyalgia. Whether that's financial, medical, or perhaps more importantly, understanding and empathy.
Helpline
FMA UK National Helpline 0844 887 2444 Mon - Fri 10am to 4pm - helpline
Websites
FMA UK http://www.fmauk.org/ - Fibromyalgia website
FMAUK FibroMapp - An app to help track symptoms / medications etc
FM NHS Choices http://www.nhs.uk/conditions/fibromyalgia/pages/introduction.aspx
UK Fibromyalgia website http://www.ukfibromyalgia.com/
Facebook.com
Fibro Chat
Fibromyalgia UK
Fibromites With Hope
Friends Because We Have Fibro
Support for Fibro Sufferers
Uk Fibromyalgia
Women With Fibro
Twitter
FibroModem
Fibroaction
Fmauk
May12th
theslowlane_ME
I'm sure there are many other really useful resources that can be added to this list, I'm sorry if I've missed anyone off.
Keep up the good work friends.
Keep smiling and be strong.
Sunday, 11 May 2014
Friday, 9 May 2014
#ThisisME - A Blog Chain
#ThisisME is
a blog chain event run by Louise Bibby of Get Up and Go Guru.
A link to her post about the initiative can be found on her site here:
This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain
She has requested that each participant answer a series of questions about their illness - either on their own blog, or by emailing the answers to Louise herself, for inclusion on her blog. My contribution follows:
A link to her post about the initiative can be found on her site here:
This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain
She has requested that each participant answer a series of questions about their illness - either on their own blog, or by emailing the answers to Louise herself, for inclusion on her blog. My contribution follows:
#ThisisME
What is your name & how long have you had ME / CFS / FM?
·
Dawn Derraven, I’ve had Fibro for a long time but
was only diagnosed just over a year ago.
Where do you live?
·
Wales, in the shadow of Twmbarlwm
Age?
·
47
5 things about you that the people in your life probably don’t know?
(non-illness related):
·
I may seem strong but I’m easily hurt.
·
I can’t stand bad feelings between anyone.
·
I have a very large, fluffy, purple onesie!
·
I really love my job.
·
I wish I’d never had my tattoo.
5 things about you that the people in your life
probably don’t know?
(illness related):
(illness related):
·
When I’m really tired I can’t talk, think, text or
even smile; breathing takes all my effort.
·
I’m not boring or up-tight, it’s just that laughing,
singing and dancing, use up too many spoons that I can’t afford to use.
·
I can’t function when I’m in pain as everything
hurts, even my teeth.
·
If I forget to do something or forget where I put
something, it’s not my fault, it’s my FM.
·
I get anxious if the route out of a room is blocked
by someone or something. Even if someone has their legs outstretched.
What one thing do you think most people wouldn’t know about living with ME / CFS / FM that you’d like them to know?
·
I’m never well; I just have various levels of
unwell. Some I can cope with, some I can’t.
What is the most frustrating aspect for you of
living with ME / CFS?
·
Having to cancel plans at the last minute as I feel
unwell, being unreliable.
Anything else you’d like to say before finishing?
·
Please take the time to learn about these invisible
illnesses, the more you understand the easier it will be for all of us.
****
Louise says:
·
Any other bloggers who want to join the blog chain,
please copy this and fill in your own answers.
·
Then email Louise@GetUpAndGoGuru.com so she can
link to your blog post in her original post.
I’d
Love You To Join In!!
Saturday, 3 May 2014
A Valuable Lesson
I remember the first counselling session I had, she asked how I felt and why I booked the appointment. I found it really weird talking about myself, I described it as self- indulgent. I'd never spoken about myself so much, it felt uncomfortable.
That's the sort of person I used to be. Always putting everyone else first, a people pleaser, going out of my way to fix everything for everyone. I'm annoyed that FM has taken that away from me.
I have had to learn to say no, I have had to accept that I'm not invincible, I'm not Super Woman!
Instinct kicks in and I want to revert to my old self; I used to be the person who everyone came to for help, both at work and at home.
I still am that person actually, but my response has had to change. Rather than taking control and fixing things, I have to give my family, friends and colleagues advice about how they can sort things out for themselves.
I've had to relinquish control and that took a long time to adjust to.
I simply don't have the energy to search for answers, to shop for particular items, to mend clothes, to research others problems, to physically do things for everyone else.
I have had to learn to be a little selfish! I'm not the first to offer my services any more. I will sit and watch my husband cleaning if I don't feel up to helping out. I try to encourage my kids to be self-sufficient, I advise them but I don't take over (I hope). I know my limitations, I know that I cant do everything. I choose my battles, I don't fight everything that I don't like, I let some things go over my head. I don't have the energy for perfection any more.
My consultant told me that FM generally strikes a certain kind of person, the person who's too nice. The person who's too helpful, too reliable, the 'go to' person. He also told me that some employers set out to identify potential employees with these personality traits, and that as a consequence company sickness levels are much higher in those organisations.
I hope this doesn't read as being pompous or as blowing my own trumpet, that's not my intention. I just wanted to share this really valuable lesson that I've had to come to terms with.
So now I have another adjustment to make, I have to learn not to feel so guilty about putting myself first, but that's a whole 'nother story!
Keep smiling and be strong.
That's the sort of person I used to be. Always putting everyone else first, a people pleaser, going out of my way to fix everything for everyone. I'm annoyed that FM has taken that away from me.
I have had to learn to say no, I have had to accept that I'm not invincible, I'm not Super Woman!
Instinct kicks in and I want to revert to my old self; I used to be the person who everyone came to for help, both at work and at home.
I still am that person actually, but my response has had to change. Rather than taking control and fixing things, I have to give my family, friends and colleagues advice about how they can sort things out for themselves.
I've had to relinquish control and that took a long time to adjust to.
I simply don't have the energy to search for answers, to shop for particular items, to mend clothes, to research others problems, to physically do things for everyone else.
I have had to learn to be a little selfish! I'm not the first to offer my services any more. I will sit and watch my husband cleaning if I don't feel up to helping out. I try to encourage my kids to be self-sufficient, I advise them but I don't take over (I hope). I know my limitations, I know that I cant do everything. I choose my battles, I don't fight everything that I don't like, I let some things go over my head. I don't have the energy for perfection any more.
My consultant told me that FM generally strikes a certain kind of person, the person who's too nice. The person who's too helpful, too reliable, the 'go to' person. He also told me that some employers set out to identify potential employees with these personality traits, and that as a consequence company sickness levels are much higher in those organisations.
I hope this doesn't read as being pompous or as blowing my own trumpet, that's not my intention. I just wanted to share this really valuable lesson that I've had to come to terms with.
So now I have another adjustment to make, I have to learn not to feel so guilty about putting myself first, but that's a whole 'nother story!
Keep smiling and be strong.
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