Fibromyalgia Throws Life Upside Down and Back To Front

Following on from my fibromyalgia diagnosis I have found that my life has been thrown upside down and back to front in many ways.  I’ve gone from being fit and active running round helping everyone I could, to walking very slowly with the aid of a stick and even had to resort to a wheelchair while visiting Windsor Castle in October… but still trying to help the world be a better place when I can… just all at a slower pace.

Friends and family keep asking ‘When will you be better?’  They then look shocked when I say never.  I then go on to explain that fibromyalgia is for life, the good news is that it isn’t degenerative but it will cause me huge flare ups through life.  These flare ups will cause great pain and tiredness as well as many other problems.  Flare ups will be caused by the weather, both heat and cold are awful triggers, as well as the main trigger which is just generally overdoing it!

The good news is that I’ve hopefully got to a level, I had still been getting worse but this week I think I might have almost managed my pacing better. This has been helped by having an extra piece of equipment at work and by having early nights, but that in turn means I’ve not had much of a life this week!  So my next quest is to find the perfect work/home balance and start to enjoy my life again.

Two of the most useful resources I’ve found to help me and other people understand fibromyalgia are The Spoon Theory and Welcome to Holland.

Please read The Spoon Theory as it makes sense, and explains perfectly how I have to live my day, every day!  It looks at the use of energy by using spoons.  Having a disability such as fibromyalgia means that we quite often use spoons doing the simplest of tasks and that I might have used half my energy for the day just by getting up, showering, eating breakfast and getting dressed, I don’t gain energy as the day goes on and sometimes can end up running out of spoons mid afternoon, that’s when I’d then end up exhausted or worse still in pain from muscle spasms.  Yes I can borrow some spoons from the next day but that then causes a downward spiral that can only be recovered from by resting and doing nothing, not something that I have time to do.  So day to day I have to be careful where and when I use my spoons, they are precious and can’t be replaced.  I’ve also tried carrying an extra physical spoon in my handbag but unfortunately that doesn’t help, just makes me smile when everything else is getting me down!

 The Spoon Theory written by Christine Miserandino

The other article we’ve seen that has put my fibromyalgia into simple to understand terms is Welcome to Holland.  Mr C brought this home from work earlier this week.  One of his NVQ candidates thought it might be useful for one of their diversity/equality pieces of work.  Apparently Mr C had a little ‘moment’ as he read it because it hit close to home and is a very good way of explaining my life and my new challenges at the moment!

Welcome to Holland  ©1987 by Emily Perl Kingsley         Produced by Positive Parenting

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may leam some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland?? I signed up for Italy!  I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around….and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go.That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

An interesting article!

So a lot to think about there.  In some ways I need to rejoice in the memory of who I was but not dwell on that, I need to become a new me, I need to live a life full of happiness and goals that I can do, not get depressed over what I can no longer do.

Life is full of highs and lows and I need to learn to pace myself so that my whole life will stay on one level where possible.  I still have to have dreams and I hope that one day I will get to Italy (New York again is my actual goal) but for now I will enjoy my time in Holland (Northumbria with my boys!)

The main things is enjoy life, make the most of what you have and live each day to the full… and an important fact of life is that ice cream is amazing and doesn’t always need a SPOON!

23 November 2013


2 Comments Add yours

  1. Sammie says:

    What a brilliant post. I will definitely show this to my hubby. I love the spoon theory and whilst in the middle of a major Fibromyalgia flare up at the moment, think that I may have borrowed against too many spoons. My body is demanding rest and I have neither the energy or will power to fight it. Once I have recovered from this flare up I will be more mindful of using my spoons wisely. Thank you for writing a post that so aptly describes what it is to live with the diagnosis of fibromyalgia. I love tulips and windmills and have been fortunate to visit Itally and Hollond both twice. I agree it is important to have dreams, I simply need to re adjust mine. Sammie xx

    1. Sharon says:

      Hello my dear… I thought it might help you and as I said please share with loved ones. It is hard when you still look the same when you look in a mirror but yet feel so broken inside. It also makes it hard for friends, family, acquaintances and colleagues to understand why we say we are struggling when externally there’s no real change. Keep smiling, sending gentle hugs and remember you are NOT alone s x

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