Today May 13th 2013 signals 8 years of me officially being diagnosed with ME. It's not an anniversary to celebrate, nor one to mourn. So just how do you behave on the anniversary of a diagnosis with a chronic invisible misunderstood illness like ME?
Other years this day has come and passed without me paying much attention, or looking back on the past year and seeing how far I've come - how much better I am than I was a year ago. I guess that's probably why this year it's proving more difficult - I am in fact worse now than I was a year ago, much worse in fact.
This time last year, ok I wasn't at my best but I was walking mostly unaided, walking into town and generally able to lead a much more normal life than I can now. I was still limited in what I could do but to me after being housebound/bedbound between 2005 and 2009 it was still something to make the most of and enjoy - I was almost normal!
Now I'm really struggling again, it all went downhill in October 2012 and has pretty much continued until now! Virus after virus, infections, allergic reactions and pressing uni deadlines have all resulted in a couple of quite severe relapses as you may know if you've been reading my blog during this time.
I'm just finding it hard to comprehend that it's been 8 years since I got ill, 8 years since I was diagnosed, 4 years since I last had any support from the hospital. I'm now almost bedbound again. I rarely leave the house unless absolutely necessary because it leaves me incredibly exhausted and in so much pain.
Each year in the past 8 years I've been able to look back and identify at least one symptom that has improved, no matter how slight and seemingly insignificant that improvement might be! But today I'm looking back and realizing how many symptoms have got worse or come back again. I can't identify one thing that has improved in that sense. Which I think is why I'm finding today so difficult.
Isolation is getting to me as well at the moment - only getting out for necessary appointments which absolutely exhaust me is disheartening. My home is becoming a prison again and there's seemingly nothing I can do to prevent this, I need to rest to get better and the only place to rest is in these four walls.
Oh well, on a more positive note...
I'd like to include a MASSIVE THANK YOU to everyone who took part in ME Awareness Day yesterday - be that posting and sharing on facebook and twitter or taking part in sponsored events. And to all of you taking part in ME Awareness Week THANK YOU too!
Together we can and will raise awareness and understanding of this devastating illness.
Thank you for reading my ramblings and current struggles, feel free to comment or tweet me. Bye for now!