Some days it seriously chronic pain, some days it’s the type of chronic pain that used to depress but now has become part of everyday life. It’s hard to remember a day when aches of some sort weren’t with me.
A saving grace is that the medication I am now on has calmed down the headaches I used to suffer day after day.
The fatigue is the hardest part. That really hits and when it hits lasting the day is a task. A strange task that is really hard to explain.
And as a result, I’ll never be able to climb Mount Everest.
Err, sorry what was that brain?
I’ll never be able to climb Mount Everest now I have Fibromyalgia.
Yeah I thought that is what you said.
Coming to terms with being diagnosed with a syndrome I had never heard of before and that has no cure was rough. Coming to terms with the pain that was now part of everyday life was really rough and still is.
But coming to terms with all the things I can now longer do is the toughest.
The problem is these are all things I never wanted to do in the first place.
Give me something that limits me in some way and the brain goes into free fall.
“Well that is the swim across the channel knocked on the head”. It was never going to happen anyway; I don’t even like the water. I only learnt out to swim underwater 4 years ago.
But now suddenly I’d bloody love a stab at swimming the channel.
Sport has always been my thing; I played football until I simply couldn’t keep up anymore and now its running. I have to keep active, if I go too long without doing something sporty it gets to me and I have always been the same.
As I have got older my brain has started a really annoying habit – challenging me.
Whispering in my ear “I bet you couldn’t do that”, “I bet you couldn’t beat them” and so on. The trouble is it doesn’t know when to stop and of course now it has gone into over drive throwing up challenges I never wanted to do, never likely to do or had never even crossed my mind.
Here are just a few challenges I have mourned no longer being able to undertake since being diagnosed:
- Cycling from Lands’ End to John O Groats (I don’t even own a bike capable)
- Breaking the world record for the longest football match
- 50 marathons in 50 days
- Taking part in an Ironman triathlon
- Cycling to work every day (my bike still isn’t good enough)
- …and on it goes
Never mind the pain – I need my brain to shut it.
I had to give up Sunday league football but when watching a game on the TV I am still convinced I could do a job in the centre of the park. The reality being that nowadays my second touch would be a tackle.
I’m new to all this, I have always had symptoms but I didn’t start suffering “full time” until around 9 months ago, diagnosed 5 months ago. Going on everything I have read since I first heard the word Fibromyalgia and reading about the people suffering, I am “really” new to all this.
But the one thing that has come to head straight away is that no matter how much pain I am in, you can’t change a state of mind. I’m a competitive person, I am a sporty person. On the days when I am in so much pain I can’t even let my kids climb all over me, I am still gagging to go for a run. The reality on these days is I can hardly reach down to put my trainers on.
Suddenly my competitive brain has a new opponent, Fibromyalgia.
However this has led to a joining of allegiances me and my brain. It’s a strong team and it has had to be.
Even on good days the pain when I run is rough. It feels like I am running with really bad leg injuries. It feels like I shouldn’t be trying it at all. But not running simply isn’t an option.
Quite what I look like I have no idea. People have laughed as I have gone past. While being lost in a mix of trying to zone out to the music in my ears and beating the pain in my body I have a feeling I am running like a constipated old man. Of course in my mind I have perfect form, if anything the pros should be checking out how I get round my run, they could learn a thing of two.
I know everyone around me thinks I am nuts for continuing to run but it’s not as nuts as I would go if I didn’t continue to accommodate my brains challenges.
My thirst for having to be active I am sure has also led to some wondering if I am as “ill” as I say I am.
The answer is of course yes, it feels like hot knifes stabbing me when I run (if I am lucky). If I am unlucky then it feels like I can’t even bend my legs without them feeling like they are going to snap.
But I have to keep running. In my mind it keeps me going. For every run I complete I win back the part of my brain that has given in to this Fibro. If I can continue running I am not giving in. Beating pain has a bizarre satisfaction about it.
And that is my state of mind. The one you can’t change, the competitive one. Gone are the targets of beating personal best times. Simply being able to take part is the goal. Nothing will ever replace the belief in my head at the start of every race that says “if I get off to a good start I could put in a decent time” but that is just me and that is just my over active unrealistic brain that still thinks I have a chance of competing at the Olympics.
(I have Fibromyalgia, that’s a disability right, so could I compete in the Paralympics right? Brain that is a whole other blog post and yet another unrealistic challenge that I need to talk to you about before this goes too far)
Suffering is bad enough but if you can if you can find that balance that allows your brain to continue to allow you to be you it might just make it bearable.