Today, Thursday 12 May, is International Awareness Day for ME / CFS and Fibromyalgia.
Some of those raising awareness suggested wearing purple so I did that today. Like many other not so good days I spent the day in my pyjamas and dressing gown. My purple dressing gown.
I thought today well worthy of a blog post. I’ve not written anything for a couple of months. There are many reasons for that, from lack of inspiration to laziness but the most apt today is the reality of living with multiple invisible health conditions and the physical and mental toll they take.
Did you notice, in the photo of my dressing gown basking in the sun above, the little purple flower?
It’s a weed actually, which has pushed its way determinedly up through the patio. I won’t pull it up because I admire the little fellow. He’s got spirit and he puts on a bright front to hide the pestilent weed inside.
When I was a kid with only one invisible disorder – type 3 Von Willebrands, a severe bleeding disorder, I insisted on working and living through bleeding challenges. Of course when I say invisible I’m not meaning the times when my body was covered in purple and yellow bruises, nor when I had to go to school in a giant blue and white striped buggy at the age of 6 with ankle bleeds, but merely that the illness is within and when looking at me as a child no-one would’ve said – oh yes, there goes a severe bleeder. My point is, like most bleeders, I tried not to let it stop me or limit how I led my life. I studied when I was in hospital having blood transfusions, I danced when on crutches having had an arthroscopy, I worked when I was bleeding from blood poisoning until I could barely stand from losing so much blood. My attitude was always I will do it! And most of the time, with the help and encouragement of friends and family, I did.
Whizzing time travel style to now and I’m faced with a plethora of invisible illnesses. A myriad of covert maladies. I need a group noun all of a sudden … an affliction? A challenge? An infection?
My Von Willebrand’s resulted in Hepatitis C from my treatment, this resulted in CFS from either the HCV treatment or the virus itself, this has expanded over the years to include formication, fibromyalgia and from time to time depression.
I would describe living with all these issues together like being in enforced limbo.
Waiting. Waiting to feel better, waiting to move on with your life, waiting to be able to do what you want to do rather than just what you’re able to, waiting to not have to manage everything so as not to make yourself worse, waiting to return to “normal”.
And it’s hard. It’s hard not to retreat from all those who when they say – you don’t look ill – mean nothing but, gosh you look well for someone poorly, in an well-meaning kind of way. It’s hard not to scream when someone asks you if you’re feeling better when you haven’t felt “better” for over 5 years now.
Believe me I actually feel pretty good most of the time – pleased to be alive, pleased not to be more sick, pleased to see the cherry blossom or manage a little bluebell walk, pleased to listen to birdsong or church bells from my bed, pleased to sing at the top of my voice in the shower or the kitchen or the garden.
And I believe it is totally possible for me to get better from at least one of my illnesses. Not the Von Willebrands. That’s with me for life and as an old friend I’d be sad to lose it. The Hepatitis C is also theoretically gone, having kicked its arse with interferon and ribaviron, and I’m praying that truly is the case. The CFS, fibromyalgia and formication. They’re just visitors, their time is limited. Admittedly this isn’t a cure, it’s a catalyst … but I’m determined, you see, and strong.
Just like that little purple flower.
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