Invisible illness...

Yesterday I went to the CFS clinic. I've had joint problems since I was about 12. I was finally diagnosed with M.E. when I was 19. Bouts of exhaustion and pretty much constant pain has been my life. It's not *that* much of a big deal in the grand scheme of things for me. For some people, M.E. is so life limiting it is the stuff of nightmares. One of my friends has a teenage daughter who is so crippled with it, she is tube fed and barely wakes for an hour a day.

For me it has always been about the pain. Most people wouldn't know. I'm quite a loud person. I prance around. I dance whenever I can. I do too much. I don't *look* like someone who is in pain. But that's the thing about invisible conditions. You quite often can't tell. Which makes it hard for people to understand.

I'm lucky. Most of my friends are really understanding that sometimes I just can't do stuff. That one day I'll be the loon jumping round the place, and the next I'm not making plans to go out in the evening because I'll be too tired. Especially as in my mid twenties I learnt the valuable lesson that unless you tell those closest to you how it affects you, they won't understand. Everything became easier from that point.

Anyway, I digress from the point of this blog post. 12 years of a diagnosis. Which for those not familar with M.E., in reality means 12 years of going to the doctors with things that cause problems, to be dismissed immediately, because they spot 'CFS' on your notes. Most doctors still don't understand it. Most doctors think it is made up. Most doctors find it easier to brush you aside by using the 'it's probably just part of your M.E.' argument. 12 years of doctors treating you like you are crazy.

Don't get me wrong, it isn't all doctors. Some are amazing. Like my GP at the moment. Who when my physio wrote to her, actually took the time to read the letter and talk to me. Who decided enough was enough. Who decided to start testing again.

You see, when I was diagnosed, it was at the end of 7 years of regular hospital appointments and test results that didn't quite come back as they were expecting. Of not quite ever getting to the bottom of it. Needles, scans, bigger needles, prodding... So it was a bit of a 'there's nothing else so let's call it M.E.' scenario.

I was sent off into the world (well, university) with this diagnosis with no real support. Nobody to check how things were progressing.

Along the way there were moments of concern. Like when I ripped my kneecap out of it's place and had to see the physio, and they raised their eyebrows at how my body behaved with treatment. Or when we had a car crash and I had awful whiplash and had to have physio and they raised their eyebrows at how my body behaved with treatment. Or when I had the Sconchlet and my hips gave up, and didn't get better afterwards and had to have physio and they raised their eyebrows at how my body behaved with treatment. See a pattern?

Eventually one of these physios wrote to my GP.


Yesterday I went to the CFS clinic. Yesterday they told me I don't have M.E. That I probably never did.

Yesterday I went to the CFS clinic. Yesterday I didn't get told I was better. I didn't get told I was crazy. Yesterday I was told the tests have to start all over again. From the start.

They have theories as to what might be causing the pain. Some less terrifying than others. Some really quite manageable.


Yesterday I went to the CFS clinic and had the outcome I desperately wanted, because I knew my diagnosis didn't fit. I knew things didn't add up. And until the diagnosis was rescinded there wasn't a doctor out there who would bother looking at my case.


But yesterday, I lost a part of my identity. Yesterday I lost the ability to be able to give people an easy answer when they ask why I am limping today but wasn't yesterday, why I just fell over for no reason, why I can't pick my daughter up even though she is begging for me to carry her.


And today I feel lost.


So that is why for Yarn Shop Day this year, one of our knit-a-longs will be for AYME. A national association that helps young people with M.E. I didn't know about this group until recently. Nobody told me about it, and I didn't get the support I should have done. Maybe with some specialist support I wouldn't be 12 years down the line before a doctor looked at my notes again.

We will be making tulips for their Knit a Tulip campaign. You can read more about it here:

AYME Website

Knit a Tulip Facebook page

They want to make 25000 tulips to raise awareness for the estimated 25000 children in the UK who are suffering with it. They also hope that if everyone who knows a child with M.E. pledged £1, they could raise at the very least, £25,000 to help support young people with M.E. and their carers.


Sam x