Back in September for Migraine Awareness Week I blogged about some of my experiences with migraine and again earlier this month I published a post Speech, Expression and Migraines. I started this blog as a creative, fun space, but there's no denying my health sometimes gets in the way of things and I also think it's important to raise awareness of conditions.
Since the age of nine my health has been pretty crummy, though looking back some of my conditions were present in a less severe form even earlier, for example a long period where every day I'd tell my mum how my stomach was nauseous and in pain. Aged nine ill health was my body's way of showing stress when someone decided to start bullying me. From this point I became chronically ill.
The bullying escalated and this was my body's vicious daily cycle up to the age of 14 or so when I moved school and was a lot happier for a while, though still getting unavoidable flare ups at times. Then in November 2007 through an 'incident' I was injured on the back of my head. This caused my migraines to go out of control and also caused a whiplash injury. Ever since that moment there has not been a second when I have not been in pain.
As weeks passed at school people were rude about my 'extra extended whiplash' (that's a quote straight from a Myspace page comment folks) which is ignorant. Whiplash isn't only caused in car accidents and it can take a very long time to go, especially if suffering setbacks such as further jolts even from daily travel. As the years passed though my family and I have also been wondering why my stupid neck isn't showing any signs of healing.
Since my last years of primary school every so often my ankles would start to be in pain when running or my wrists in pain from writing, playing the flute or other activities. This was diagnosed as tendonitis. My knees have also become more troublesome. This last Autumn my tendons started playing up unbearably. So did all my muscles and all my joints, the latter of which sometimes like to swell up (as yet) unexplainedly. Over the years I have learnt to go on with the migraine symptoms, but this new onset of pain has been unbearable.
The last few months have involved very, very, very, very, very long waiting lists and a host of appointments, including a trip to Rheumatology at hospital. I'd already had a blood test which didn't show any signs of arthritis (though these tests are by no means 100% definitive). I wasn't quite sure what to expect but after twenty minutes of questions and prodding I was handed a booklet on fibromyalgia and my GP was then sent a follow up letter through which I found out I had been discharged.
It's fair to say this left me a somewhat startled bunny; to wait all those weeks for a diagnosis announced so quickly. However, there's no doubt fibromyalgia I do have.
What is fibromyalgia?
Here's a quote from charity Fibroawareness... Fibromyalgia Syndrome also known as Fibro, FM or FMS is a chronic illness which presents widespread pain and profound fatigue. Fibromyalgia is such a life-altering debilitating condition, however there is a lack of awareness about this illness even though there are approximately 3 million sufferers across the UK!
It's always really hard to imagine a condition which someone else is suffering from and you have no experience of, and even within one condition experiences can vary so much. I think it's vital to raise awareness of this invisible illness, which is why I wholeheartedly champion...
Useful informative sessions and a bouncy castle?! Yes please! In fact I'm really sad I can't go to this amazing day organised by FibroAwareness. I found out about it through fellow blogger Lucy of loopysos who is very lovely and also a guest speaker on the day!
The event will happen on Sunday 13th May at Kingswood House, Seeley Drive, West Dulwich, London SE21 8QN. I hope everyone who goes has a wonderful day and I'd love to hear all about it!
5 comments:
I have migraines. They aren't so regular nowadays, but I go through periods of having them really regular, they tend to be hormonal, so I can sympathise with that. Take care. x
You poor thing! I can't imagine what you go through everyday, and the fact that you even get out of bed each day makes you such an inspiration to me - I'm pretty sure I wouldn't want to in your position!
On the plus side that sounds like an awesome day to raise awareness!
I can hardly imagine how horrid it must be to have tendonitis-like symptoms all the time. :( Poor you. But a diagnosis must be some kind of a relief at least.
This event sounds great. I hope it is successful.
Well done on being such a role model for young people with 'invisible' illnesses, through your blog you show that while these conditions are real and need awareness, they won't beat you, it's your mind, creativity and spirit which will shine through.
I agree with your readers. Your determination and hard work shows throughout this Blog, creative pretty talented young lady, hopefully one day we shall meet and discuss our unhealthy obsession with Hello Kitty ;) x
I've noticed quite a lot of writers/bloggers deal with health issues- perhaps we're forced to write as our heads are fine, but our bodies are tired. I dunno. I've suffered from migraines since age 3 (and funny how if you don't have 'em you can NOT understand the pain!) and have struggled with CFS since the early '90's. My stepmom as Fibromalygia and it's a misunderstood condition. But really, unless you have it, how can you understand it?
I'm sorry you've had chronic illness to fight your whole life. I know how hard it can be to live a "normal" life with at any moment you might not feel good. I think the only advantage is, I've noticed that people who deal with chronic pain, are also compassionate people- they know what it's like to suffer so extend a much needed sympathy out to others. Which we need in this day and age.
Wishing you well, love. the Citizen Rosebud
Post a Comment