Wednesday, 1 March 2017

My 7 year ME/CFS diagnosis anniversary

1st March. My MEversary. Diagnosis anniversaries are tough, and I can't properly explain it.. They make you reflect on life and where you're at, and the years with chronic illness that have passed. I was diagnosed with Chronic Fatigue Syndrome in 2010, 7 years ago. I'd been ill for 6 months. I was 17 at the time. I've now been ill for 3/10ths of my life.😳 How the hell has that happened?! I thought I'd be better in a matter of weeks. 390 weeks (and counting) isn't quite what I was thinking..


The last 7.5 years have been beyond difficult, but they haven't been all bad. I've had some great times, with some fabulous people. Chronic illness hasn't wrecked everything. But it has wrecked a hell of a lot.


Chronic illness has scuppered a lot of my life plans. Uni didn't go to plan, and became out of of the question when things escalated. I'm currently not massively functional and am very held back by my health. I've been exhausted and in pain for 7.5 years. I currently have carers coming into me and am having alarms set up. My life is not how I would have ever imagined.


I hate that I got so ill while I was so young, and I hate that it's been so many years and I barely remember being well, and it's not always easy to know whether it's good to remind myself of all the years ahead of me. I hate the possibility of so many years ahead of me suffering with ill health (physical and mental), but I'm still young and there are so many possibilities and different ways I can choose to shape my life. Mostly I choose to live 'in the present moment', trying to distract myself from the past to be honest, but sometimes it's good to look to the future, and try to convince myself that it can be enjoyable and positive.


There are good things about my life, but it's also challenging and hard and painful and dull and lonely at times.. My health problems eventually took their toll on my mental health, and my mental health difficulties, and treatment for them, is a real struggle, particularly alongside demanding physical rehabilitation.


7.5 years is a really long time. But things have changed and varied a lot during that time, giving me hope that things won't be this way forever. There will be challenging times ahead, I'm sure of that, but I'm currently making some progress and working hard with various professionals, so I hope with time things will seem easier. In the last year I've learned to stand again, and learned to walk again. I can now do some things more easily. I'm no longer afraid to move my legs for fear of triggering seizures. I'm a bit more relaxed in bed at night. I've come a long way in a number of ways, and there is reason to believe that my progress can continue.. I daren't believe I can make a total recovery, but (some..) things are moving in the right direction, and I can only hope that that continues..


Hopefully another year down the line I can write a post reflecting on the amount of progress I have continued to make. My ME/CFS is no longer the condition that is disabling me most, but it continues to be a struggle, and it's where it all began, 7.5 years ago.



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