I can’t believe today marks 13 years since I got diagnosed. Yes it is May 13th and my 13th ME-versary! A day of mixed emotions remembering the feeling of relief that day 13 years ago at finally getting a diagnosis, of someone saying they know what’s wrong. Then as the years have passed I’ve realised that actually no one truly knows what is wrong with me; if they did there’d be more support, a treatment and maybe even a cure.
On that front everything this year seems to be going at a fast pace, not just in terms of how fast the year is going (how is it May already?!) but also my referral to the CFS Clinic, made at the beginning of March & first appointment was the end of April! Super speedy. And now I have a further two appointments already made. This is the first form of support I’ve had, other than a GP, in 9 years.
The first CFS Clinic appointment went well & gave me cause to be optimistic; they actually listened to me! Since having a diagnosis of ME so many doctors have just brushed aside my concerns about new symptoms as ‘just being ME’ and left me to manage things on my own. I’ve lost count of the number of times I’ve left a doctor’s office on the verge of tears, despondent at the lack of support. I know there’s not much they can do for ME, but a bit of support goes a long way. This was the first time in a long while I left the office of a medical professional feeling optimistic.
I’ve had to have another blood test, in addition to the one I had back in March. This time I didn’t faint mid-test though, my body waited until afterwards! Maybe that’s progress!
I don’t know if any of this will lead to anything, but right now knowing there’s someone there who will listen to me at these appointments and offer support is help enough. It’s hard to explain but having had almost nothing in the way of support (medically) for the past nine years, virtually anything the clinic offers is better than what I’ve previously had – the starting bar is already mightily low.
It’s also come at a time when my health has deteriorated, this blog post has taken me days to write because I can’t type, or even think clearly enough to put a sentence together for very long. It’s been written literally a paragraph at a time over almost two weeks. My legs frequently feel like they’re going to give way beneath me, and my arms aren’t much better when I try holding onto things for support. The pain levels have increased, as has sensitivity to noise and light – ear plugs & sunglasses are my best friends! I can’t manage much activity each day and require help with simple tasks again. It’s taking time to get used to, to adjust to a further reduced level of independence.
I’m not expecting a miracle treatment or cure but having some support is wonderful! Here’s hoping this time next year, maybe, just perhaps, things might be a little easier than they are right now.
But this anniversary isn’t all about focusing on the continued lack of understanding, support and treatment, it is also about celebrating the person I’ve become as a result of having this illness. Through the years I have found I am stronger and braver than I ever thought possible, I have survived bouts of such poor health looking back I’m amazed at how positive I managed to remain. That’s not to say I don’t have my moments of feeling sad & frustrated about all that I’ve missed out on, am unable to do and how uncertain my future looks. But for the most part I remain positive and try to achieve things despite the limitations this illness imposes. The biggest of those during the last 13 years has been my degree; possibly the most challenging thing I’ve taken on in life if you don’t include the challenge that being chronically ill presents!
So today there shall be cake & smiles even though I’ve been ill 13 years and it seems I’m no closer to recovering. I will make the most of what I can do and enjoy that.
Besides my wonderful friend over at the-slowlane-me is hosting a Blue Sunday tea party, and so cake is definitely a must, I may not be able to join in personally but I’m there virtually! If you want to support her in raising money for the ME Association then please join in, details can be found here: https://twitter.com/theslowlane_ME/status/995576623310213120?s=09