It struck me late last night that today is another MEversary for me. It’s exactly 18 months since I rang in sick and didn’t go back to work. I know, it seems a bit odd marking a half year, like a parent who tells you their child is 30 months old, and you wonder how quickly you can exit the conversion (She’s 2 and a half for goodness sake!) Somehow though, a year and a half feels significant in the ME journey. It’s a long enough time to pretty much put any concept of Post Viral Fatigue Syndrome behind me and accept that yes, I’m in this for the long haul.
Even 18 months later I occasionally get an odd feeling that I’ve neglected to go into work, and, what will my boss say?! I wonder whether this is because I never really managed a proper ‘ending’ and endings are so important when it comes to managing grief.
Sometimes random work-based tasks come to mind and I have that sad but then also comforting realisation that it’s not my problem anymore. My work is now to rest. I have to take a professional approach to my work. This includes being disciplined, timely and diligent in my responsibility. If I don’t rest then I won’t be able to cook dinner for my family as I’ll use my energy resources too soon and crash out. Seeing rest as a job has been a good analogy for me, as I no longer feel guilty about going to bed and shutting down.
It seems that amongst the online ME community MEversaries are really significant. Many people put how many years they’ve been ill on their twitter bio, or mention it during a Facebook interaction. I think, rather than the parent with the 37 month old child who’s fastidiously marking milestones off and measuring development on their iPhone app (they’re deffo iPhone people, sorry!), marking time is a way of dealing with grief. I think it’s also so that others can recognise the ME/CFS war veterans and know that this is a person we can trust to talk to us honestly and without illusion about the realities of life with ME. I don’t really like the language of war or battle when it comes to ME as it places an emphasis on striving and activity, which in turn reminds us of the risks associated with over-exertion. Yet, sometimes a soldier analogy is needed.
To those who have fought on through years and years of this nasty illness, I salute you!
I’m not sure how to mark this day. When I hit a year, I made sure I had a chill-out day. I think I did myself a fry up at lunchtime, like the comforting thought of going to a greasy spoon cafe without the noise and energy drain of getting there. Those places are timeless and somehow so is a fry up… we step outside the constraints of time and become present and at one with the experience of the all-day breakfast, even if it makes us that tiny bit fatter and doesn’t help our healthy eating regime.
If you have an illness anniversary coming up this summer, I hope you still have some hope. I hope that hope finds you when you need it. I find that when I’m hopeful, I’m in a much better place in myself and my interactions with others are more positive than when I’m dwelling on the frustration. Hope doesn’t have to be about full recovery, but of getting out tomorrow, of seeing an owl in flight, of the sun shining and of further funding into research. Here’s to acknowledging the journey, while hoping for a better day.
How do you manage ‘self care’ when it comes to Spoonieversaries? Do you mark the occasion or try hard not to think about it? Let me know in the comments.