Thursday, December 3, 2009

On living with Fibromyalgia

Learning to live with Fibromyalgia has taught me many things. And what I’m learning right now is to be kind to myself, not to expect so much from myself all the time.

Whilst I was only formally diagnosed with Fibro a couple of years ago, I’m pretty sure I have suffered on and off since I was about 17. At first they said it was “growing pains”. When I pointed out I wasn’t growing anymore they called it ME. Somewhere along the line that got changed to CFS (although I’m pretty sure they’re the same thing) and now it’s got another name! Whatever you call it, in the long run it amounts to the same thing – exhaustion, headaches, a 15 year sore throat (!!) and, coupled with the scoliosis, pretty much constant chronic pain.

Now before I go on I want to say that this isn’t a self-pity post. This isn’t a “Why Me?” lament (because, as I have said before, “Why Not Me?”). This is just a reminder of how far I’ve come.

One of the hardest things I’ve had to deal with is other people’s attitudes. ME has another name in the UK – “Malingerer’s Disease” – and I cannot tell you how many times people have said to me “but you don’t look ill”. No maybe I don’t, I’m a whizz with the make up brush but inside I feel like stir-fried ass – thanks for asking! ;p

But no matter how hard it’s been I’ve always tried to live my life to the fullest, to drag my sorry carcass out of bed and get on with things to the best of my endeavours. There have been times when I’ve had to put my hands up and admit that something is too much. I decided against a long-term dream of studying Archaeology because I knew my health wasn’t up to the 12 weeks a year in a tent in a field digging holes aspect of it all. But if I had studied Archaeology I would never have gone to Australia and I would certainly never have found out I could write.

And that’s it isn’t it, dear reader? Everything that happens, good or bad, gets us to where we are today. Yes, I may have to walk rather than run, I certainly can’t have more than one alcoholic drink without falling asleep and some days I have to drag that aforementioned sorry carcass back to bed. But on the other hand, I have gained an Masters degree, travelled the world (more than once) and worked in law in the City of London for nearly 10 years. And I also know without this I would never have become a yoga teacher. After years of practice that helped me keep my body strong enough to deal with pain and my mind strong enough to deal with the sadness the pain could bring and with the help of some fantastic teachers I realised that my limitations (for want of a better word) could help me reach out to people who wanted to know about yoga but had been too afraid to ask! As I tell my students, if I can do it anyone can.

I have days when the pain is too much, when it really brings me down. But we all have bad days. Right now I’m learning to accept the bad days and look after myself on them, because there are so many good days and I have achieved so much in my own little way.

7 comments:

CambridgeLady said...

Inspirational post Rachel! I am full of admiration for you and for what you have achieved (and no doubt will go on to achieve). Thank you for this post as it has educated me about a condition I knew little about. Take care xx

Jamie said...

Your fellow yoginis are proud of you for your commitment to living life to the fullest :)

Thanks for your story and for your positive outlook!

Eco Yogini said...

what a fantastic inspiration you are! (teehee, I sound like yoda).

Yep- Fibromyalgia is such a misunderstood illness. it's so wonderful that yoga has been pivotal in helping you with your pain.

I agree that my favourite teachers have always been the ones for whom yoga hasn't come easily... they understand and are more emphathetic. which is something that is difficult to emulate or 'learn'.

babs said...

Beautiful post, Rachel. I love your attitude of "why not me". I admire your grace.

rand(om) bites said...

This is a really cool post Rachel and thank you so much for sharing something so personal on your blog with us. You're so inspiring and I would never ever think that you are a "woe is me" kind of gal. You're awesome and I can only just imagine how beautiful your classes would be. One day....when in the UK....soon!

Rachel said...

Thank you everyone for your kind words :D

Emma said...

one of my best friends has the disease. i try to help her with specific poses... do you have any suggestions?

cheers,

emma