Fibro…what?

If I can put my customary silliness to one side for today, I’d like to talk about something a little more serious.  Wait.. don’t navigate away – it’ll still be interesting.  I hope.

What I’d like to write about today is Fibromyalgia. It’s a medical condition which is literally very close to home, in that the person I love and am planning to get married to has it.  If you haven’t heard of it, don’t worry, I hadn’t heard of it prior to meeting Corinne, but since I’ve had it explained to me, it now seems to be extremely common for something I didn’t even know existed before 2010.  My cousin’s ex-wife has it.  A friend of my best friend, Robert, suffers from it.  However, most people I talk to haven’t heard of it – and that needs to change.

What is it, exactly?  Well, simply put, Fibromyalgia – taken from the Greek words meaning connective tissue and muscle pain – is thought to be a disorder of the central nervous system and manifests itself as (often severe) chronic and widespread pain throughout the body, often coupled with other symptoms including insomnia, fatigue and stiffness.  Doctors still don’t know for certain what causes Fibro and, indeed, some Doctors still refuse to diagnose Fibromyalgia because of their lack of understanding of it and the fact that there haven’t been any conventional and concrete tests in order to make a cast iron diagnosis.  In short, Doctors, like any other humans beings, have been quick to throw scorn on something they don’t understand.  Thankfully there are more and more enlightened Doctors out there these days, but people still struggle to have their illness recognised and treated for what it is.

Unfortunately, at present, there is no cure for Fibro and many of the medications used to manage the symptoms are usually used to treat other conditions.  Perhaps this is because it’s so rare, right?  Wrong.  It’s estimated that Fibromyalgia affects approximately 2 to 4 percent of the population (which, out of a UK population of 61.5 million in 2009, means that there could be well in excess of 1.5 million people with Fibromyalgia in this country alone), with around 90% of these sufferers being female.  It’s much more common than you’d think, this condition that so few people have heard about.  It’s not a new thing, either.  Sufferers throughout history are thought to include Florence Nightingale and Charles Darwin, although we seem to be no closer to understanding it now than in their day.

People meeting Corinne on a “good day” may be under the impression that there is very little wrong with her.  Her cheerful nature, wonderful smile and positivity would be one of the first things you noticed about her, before you clocked the walking stick.  The fact is, that even on her best days, she is in constant pain and is nearly always managing pain with huge amount of Codeine and Paracetamol, as well as other medication to lessen the impact of her condition.  Doing ordinary things like going out shopping or taking the kids to the park takes planning, resting beforehand and resting afterwards – and these things can only happen on a “good day”.  Even on her better days, she can crash unexpectedly and need to lie down or sleep.

On bad days, it upsets me to see just how much pain she is in.  She looks pale, distressed, older.  She can’t think properly, has sensory overload and nothing she does to manage her pain seems to work.  On those days, there is nothing she can do other than attempt to have complete rest or sleep her way through it.  The majority of days, however, are neither good nor bad, but somewhere in the middle, days where she has to live with pain that, I’m sure, would drive someone “normal” crazy in a short amount of time – but she gets on with her life as best as she can.  She seldom lets it beat her and attempts to live as regular a life as possible, managing to be a wonderful partner and Mother of three.  For that, she has my deep admiration and utmost respect.

It can be difficult living with and caring for someone with a disability, but a lot of the time I am able to almost forget about it, even though it is in the back of my mind.  I keep track of her medication almost as diligently as Corinne does and always make sure that I make her life as easy as it possibly can be – if I’m able.  The fact of the matter is that it is, undoubtedly, a severe disability on Corinne’s worst days and “merely” a significantly debilitating condition when she’s feeling at her best.  Personally speaking, although I would do anything to bear her pain, I couldn’t imagine living with something like this, day-to-day, and the fact that it is so very under-recognised and misunderstood makes it even worse.

Corinne has many “Fibro friends” on Facebook, with whom she can vent and share her day-to-day trials as well as the positive episodes of her life.  She also has done her best and continues to try to help others who need information about the condition, as she has made it her business to find out virtually everything there is to know about the possible causes of, treatment of and coping mechanisms when living with Fibromyalgia.  That’s yet another thing I admire about her is that she makes so much time for others, often receiving private messages from people in the UK and around the world with Fibro and typing out lengthy replies with advice, links and, above all else, empathy and warmth.  She amazes me and it’s just one of the many things I love about her.

So, what’s the point of this ‘blog entry?  Well, it’s spreading the word, really.  I’m not after your hard-earned money.  I’m not asking you to donate, distribute flyers, go on sponsored runs or to eat your weight in lard.  I just want you to know about it.  To be able to pronounce it (Fi-bro-my-al-ja or sometimes Fi-bro-my-al-gi-a), to be able to say that you’ve heard of it, to be able to speak to one of the thousands of people who suffer with it and, at least, be able to tell them that you basically know what it is.  That means something.  There’s a lot of ignorance out there.  Some Doctors still refuse to recognise it as a real condition.  There have even been hate groups on Facebook insulting sufferers, labeling them mad and lazy.  Believe me, it’s real.  I live with it every day.  I see the woman I love in so much pain, it breaks my heart.  If it was a terminal condition, it would have so much more publicity.  If it actually killed people, it would be foremost in people’s minds, along with HIV, MS and Cancer, but Fibromyalgia merely leaves sufferers often wishing that they could die.

There is an awareness campaign called http://www.fibroduck.com/ which aims to get over a million little spotted rubber ducks out there in the world, to spread the word about Fibromyalgia.  See if you can spot any of their little ducks while you’re out and about.  Currently, on the home page, there are photographs of the “fibroducks” from all over the world, which – if you visit the website – will give you an idea of how widespread Fibro is.   However, that’s really up to you.  If you’ve come this far and read this ‘blog entry all the way through, then thank you.  A little understanding of a common condition that people have rarely heard about is all I’ve set out to achieve.   I hope I’ve managed to do that.

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About A.D.S.

You are reading the musings of a music-obsessed forty-something who was brought up on The Beatles, lived through Britpop and now spends his time in pursuit of the best music around. This 'blog gives me an outlet to write about the huge number of albums I buy and the many gigs I go to. All of the opinions expressed are my own and if you don't agree with me, then I understand - music is a very personal thing. I like to receive comments, especially if they're nice ones.
This entry was posted in Day-to-day life, Family, Fibromyalgia and tagged , . Bookmark the permalink.

14 Responses to Fibro…what?

  1. Amazing is all i can say….I love that you take the time to care and learn to understand your fiances condition…being a fibro sufferer myself…I can assure you that means more than anything is to have someone who will take the time to help and understand…and to care for her!! God bless you both….and you give me hope!

    • Hi Christy, thank you for your comments. I’ve had a read of your ‘blog and I admire the positive way in which you face life with Fibro. In all honesty, and I apologise if this sounds in any way corny, love is the reason I feel and respond the way I do to Corinne’s condition. If you have a partnership based on love and respect then it makes listening and caring very easy indeed. My thoughts are with you and everyone with Fibro, CFS, ME and other debilitating, life-altering conditions.

  2. I dont think it sounds corny in any way…I think it sounds exactly the way love and partnership should in fact work…some are not as lucky to have their loved ones understand and I know its the only thing that can help us through this Fibro hell we live in…If our loved ones would just take time to care and understand maybe the fight at times wouldnt seem so hard!…and Thank you I am all about trying to remain positive for myself and help me to get through it! I have always been a happy person so I wont let anything take that from me! =)

  3. Brenda says:

    Thank you, Andrew! As a sufferer of fibromyalgia myself, I could not have described any better the misery of this illness. Like your beloved, I try to keep cheerful and help others. Unlike her, I am not blessed with a loving, caring, understanding partner, which is the biggest help in dealing with fibro. God bless you both and give you the happiness you deserve.

  4. Thank you, Brenda. I’m sorry that you don’t have the support you deserve from a partner, but hope that you have other support in terms of friends and family. I couldn’t imagine someone facing something like Fibro without it, but – after reading many sufferers’ accounts – know that there are a lot of people out there who could do with a lot more understanding, at the very least. I wish you all the best.

  5. Melissa says:

    Your fiancee is a very blessed woman. Although I sought to educate my then fiancee on the ins and outs of my fibro, it didn’t take him long after marriage for him to be done with dealing with it.

    I pray for you and your future wife to have a close, unconditional, wonderful marriage. You are an amazing person and your fiancee is truly blessed.

    • You’re too kind, Melissa. Thank you for your comments and I’m truly sorry that things didn’t work out with your husband. Life deals Fibro sufferers a bad hand in many ways, often, it seems, affecting – and destroying – relationships. Corinne has related many people’s stories to me – and it says a lot about human nature in general that many people react by running away instead of staying to provide love and support. I can only guess that the true deep love wasn’t there in the first place in those instances, but who am I to say?

  6. Sarah says:

    How wonderful to read this from a partners point of view, I have fibro and I really worry about the effect it has on the man in my life. He is like you loving,understanding and amazing the way he will do what ever he can to help me. We dont live together so he as yet as not seen me at my very worst though I am sure he has a fair idea how debilitated I can be from my “good” days! Does your partner take anything other than pain meds? Being positive is def the key to coping with this but you are right I suspect that your partners smile hides the level of pain. I think we become experts at putting a brave face on things! Love and hugs (gentle ones) to you both xxx

    • Thank you for your comment – I’m warmed to know that you have a loving, supportive partner. I honestly believe that if the love is there, the understanding and support will always follow. Other medication Corinne takes includes Gabapentin (which she is attempting to wean herself off), Diazepam when needed, Diclofenac, Fluoxetine, Mebeverine (for IBS symptoms) and “M.E. Relief”, something she gets by mail order – it’s basically an amino acid supplement. All our very best to you and your partner.

  7. Sarah Lloyd says:

    Thank you so much for your compassion and caring about such an awful condition. I wish you great happiness together!

  8. Lorna Ferguson says:

    What a great article, very interesting to read about the fibro experience from the other side. As a sufferer myself it means a lot that non sufferers like yourself and my own fiance have taken the time to understand this miserable illness. The description of what your partner goes through and how she deals with it and all the medications she takes is so familiar Ifelt I could have wrote it myself. Well done to you for taking the time to acknowledge this illness and for being such a supportive partner.

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