This week was my three year sickiversary with ME/CFS. I posted the below two things on Instagram.
Me this morning, trying to cure Mondayitis and drag my butt to the office in my great new top from @17_sundays. I wore it with compression leggings from @rainbeaucurves, which are one of my favourite things for comfort, because I was pretty achey. Once I had a coffee (ok… two) in me I got going OK for the day but I’m falling asleep already. This week is my three-year ‘sickiversary’ with #mecfs. I should probably stop counting since it doesn’t seem like it’s going anywhere, especially since it seems there’s probably a genetic element. But it’s also not hard to remember exactly when everything changed and I went from feeling somewhat tired and run down (which I was trying to fight with exercise and diet) to feeling sick – it was this week three years ago dammit!!! #invisibleillness #chronicillness
Messy room in a messy life. Messy bed that I spend too much time in. I took this pic the other night when I was thinking about hitting three years of #mecfs. Sometimes I am busy enough that I don’t think about it too much, other times the feelings of dissatisfaction with it and everything it has done or stopped or put into question are just too much. Sometimes I feel like I’m doing OK, sometimes I feel like I’m failing. Sometimes I think: ‘Am I really sick? Am I just unfit and lazy? Am I just not trying hard enough?’. Other times I’m too sick to think. Sometimes I feel like I talk about it too much, other times I feel like I’ve covered it up to the point where some people have forgotten. Sometimes I can make jokes about it, other times I choke up if I try to talk about it. Sometimes I’m happy to dress up or be social, other times I hate my body so much and just want to hide. Sometimes I can take pleasure in the small achievements and everyday nice moments, other times I’m depressed and anxious. I want more from my life but I’m also scared that if I chase too much more, I will lose what I have. I hear people say ‘my friend had that but they’ve overcome it’ while at the same time my family tree seems etched with women who have probably had it for a long time. Sometimes I think maybe it’s not as bad as it was in the first year or so, then I remember that I was still trying to do more then and now I just do less. So three years in, the day to day ticks away. This year in particular feels like it has just vanished. But the questions, uncertainty, lack of direction and general sense of dissatisfaction remains. It’s a yo-yo of energy and emotion. #chronicillness #chronicfatiguesyndrome
I got lovely, supportive comments. Some people left sad face reax and said that the second one made them tear up a bit. That definitely wasn’t my intention, in a way I’m kind of proud that I have pulled myself through three years of all of the above. But it does very much reflect the emotional reality of it.
There’s probably not much more to add from what I’ve already written in those posts when it comes to thinking about dealing with this total bitch of an illness for three years. Today I’m really sore and exhausted, and running a fever because I’ve overdone it a bit.
But I have some positive things on the horizon in that I am going to move and share with my sister, as she has a job in Canberra for next year, so that should be a positive change (though the thought of packing and moving is exhausting for a well person, let alone me! Hopefully I’ll be able to muster some help). My current place has been a good place to live, unfortunately because it was built in the early 1960s it’s just quite cold in the winter (and can get pretty hot in summer if we have a run of hot days as well). So somewhere more modern and energy efficient will be good. And I just feel like I really need some kind of change in my life, so I’m hoping that helps my feelings about it all. Plus it will be nice to have family nearby. So that is something I’m looking forward to as I look to tackling year four of sickness.