We've been approached by author Cris Williams to help her source respondents for a new book she is currently writing which will seek to raise awareness of chronic pain conditions - fibro, IBS and so on - and get the message out there about how it affects each and every one of us.
The writer is looking for responses from anyone touched by Fibromyalgia - male and female patients, carers, partners, children and even doctors - to enable her to write from all perspectives.
If you're interested, or know of someone who might be willing to complete a short(ish) questionnaire, please email voices4chronicpain@gmail.com in the first instance.
For my part I have already received the questionnaire and it looks relatively straightforward from a patient's perspective - how it affects my day to day activities, how I feel about the illness etc etc.
I have also roped in my long suffering wife and her questionnaire from a partner's perspective is equally straightforward!
The questionnaires can be completed in your own time and total anonymity is guaranteed if you wish it. (Never one to shy away from these things I'm having my name in huge letters across anything used in the published tome!! - after all we must all play our part in raising awareness of this hideous condition!!)
So, please, step up, email the writer and get your, your partners, carers, childrens voices heard.
Email voices4chronicpain@gmail.com
Fibromyalgia. It's a very difficult illness to deal with. I can say that in all honesty as I know the pain of fibromyalgia and all of the misery and suffering it, and its associated conditions, can bring.
There are so many blogs about fibro, mine included, that are written by, and therefore from the perspective of, fibro sufferers. But what is it like to be a partner or carer of a fibromyalgia patient?
It's refreshing to find a blog that shares the story from a partner / carer's point of view. This is Tim Clevinger's story:
FIBROMYALGIA - It Affects Men Too - AS SEEN BY A HUSBAND / CARER -
"In February of 2006, we had our first child, Gabriel. My
wife had to have an emergency induction, and he was born four weeks
early. I knew this procedure would have a physical effect on her, but
what came next, I knew would have longer lasting repercussions. We
became pregnant with our second child six short months after Gabriel’s
birth.
The stress of having two young children within fifteen months was
difficult to bear at times. We were brand new parents to one child, and
before we could even grasp parenting, we had a second child.
At first I thought stress and sleep deprivation was causing her pain.
I always assumed that time would heal, and she would return to be the
active, stress-free person I grew to know and love. This was not the case. She was getting worse with no clear cause.
Needless to say, it was an emotional time for us. She would have
regular doctor’s appointments and they all told us the same thing, “Time
will heal. Take medication.” This wasn’t an appropriate solution. She
only had the option to take some over-the-counter medicine and rest
which only subdued the pain, not relieve it.
Before long, we had our third and fourth children. I think the last
pregnancy is what triggered her in a downward spiral. It wasn’t only
just the pain that was taking its toll; it was also mood swings and
depression. So many days I would come home from work to find her crying
upstairs in our bedroom because of the pain. All I could do was hold her
and reassure her.
I couldn’t empathize with her pain. She resented me for that. What
could I do? I felt helpless. I hated it. The person I love most in this
world was being attacked and there was nothing I could do about it.
The strongest person I’ve ever known is crying to me for help. Many
nights I would cry while she slept; praying to a God I’m not sure exists
in the hopes that someone or something will hear me. She does not know
this until now.
I tried, and still try to help around the house more, and help out
where I can. I like to think that my efforts make a difference, but her
constant painful cringes and crying tell me otherwise.
In December 2012 she found a doctor that solidified the notion that
this in fact was a condition. Finally!!! Now we have a plan, and we have
a means of controlling it. Unfortunately there is no cure for chronic
pain and fibromyalgia. I wish I could take the pain from her.
I know she’s strong enough to fight for her well-being. She can now
take part in physical therapy, and she is always finding natural
remedies and ways to manage her pain.
The person she is today is a complete 180 from the person she was a
year ago. Her mood swings are non-existent, and her depression is
manageable. I know that if she can fight through this, then I can fight
with her. I will never truly understand her pain. Helping her, and
supporting her is the best that I can do. I can only hope that others
that suffer with this physical affliction can find their strength. Every
day my wife impresses me, and every day I admire and love her that much
more for her strength."
So, you see, fibromyalgia affects everyone and sometimes it's very difficult for us patients to fully understand what our partners are going through, especially when all we can focus on is our own pain.
This "Your Stories" feature is reproduced with kind permission from an orginal post by Brandi Clevinger on her blog Being Fibro Mom and was also shared as part of FibroFiday at Fibro Blogger Directory
If you care for a fibromyalgia sufferer you can share your perspective too - just click here.
