I started this post in July. That’s how my blog works. Each post takes a while because my energy supply and concentration is limited. I’ve added to it here and there and just as I’ve realised it’s almost time to publish it, it’s clear it can no longer stay as it was because of how poorly I currently am.
It started as a list of all of the progress and positives that have come about over the past four years. Some of the things that I included, such as being able to use the stairs, are no longer relevant. Not at this exact moment in time anyway. It included being well enough to never have to use the dining room as a bedroom ever again. Well… The post was meant to be about it being four years of progress rather than four years of illness.
The original list as of July 2014:
Four years – not of illness but of progress
Moved out of the dining room – the biggest achievement!
Peel old off milk
Pierce cartons with straw
Starting to grow my hair and have been managing to wash it myself
Walking up the stairs
Payback dramatically reduced
Deal with it better
More understanding of other people; everyone has their own cross to bear
Relationships strengthen and lost; all for the better if you’ve developed that thick skin needed to be chronically ill
Mum’s now an amateur barber and cuts my hair for free!
Dad can use me as an excuse to buy a whole host of bird feeders and suchlike!
My siblings can say they’re babysitting me if they don’t want to go to certain social engagement!
So four years. Of illness.
Four years ago today I first told my friends that I hadn’t been feeling too well. (We were all going out and they were staying at mine. I’ve come to call it my last night of freedom.) I hadn’t been able to see properly and was experiencing crippling pain in my head that left me unable to do anything but clutch my head in my hands for seconds at a time.
On that Friday (10th September 2010) I had my first medical appointment regarding my out of focus vision. My first port of call was the optician because I knew any GP would send me to get my eyes checked before I’d even finished telling them about my symptoms. (They sent me again anyway!) The optician found, after doing every test available to him, no abnormalities and no change in my prescription.
I carried on as normal until 25th September when my limbs had turned to lead and I was sleeping an incredible amount to combat the fatigue. I could hardly lift my own head it felt so heavy. I felt like I was walking through tar. I made an emergency doctors appointment. My first doctors appointment was on Tuesday 28th September (funny what you remember!) and I have been ill every single day since.
Four years ago today it all began: the circus of doctors appointments and waiting and declining interviews for graduate jobs and leaving my job and losing my independence and selling my car…
To those who knew me at that time: Did you think I would be better by now? Did you imagine it would last this long? I never imagined this, even after my diagnosis. I had no idea that this is how life could be; that a group of severely ill people could be so neglected and receive little to no accurate treatment. We’re pushed ‘out of sight, out of mind.’
So this post isn’t at all what I wanted it to be. I’m not where I wanted to be either. Alas, today I am eating ‘I-have-survived-four-years-of-M.E.’ cake. Gobble gobble! Surely surviving this is worthy of a celebration of some sort? How many years have you survived? Hats off to is all!
Although I try to live day-by-day week-by-week, here’s to the next year. I have no idea what it’ll bring but I hope I continue to embrace this life changing experience as best as I can and I hope you’ll stick with me.