I was diagnosed with Myalgic Encephalomyelitis (then called Chronic Fatigue Syndrome) in late 1999, which means I have been living with this debilitating disease for just over 20 years. In the course of these twenty years I have worked as regularly as I can. Some years have been better than others
And then there is this year.
This year has been a roller coaster ride that hasn't been fun at all, but I admit I should have known my limits and I know that I have pushed past them. Between a full time job, class, family and trying to live a healthier life... well... all was good up until the snow and winter hit.
Gone was the barely held together balance of life, work, and school. In its place was a constant nagging headache, and the slow deterioration of my mobility (the truly fun part of ME is that it almost mimic MS to the point of being mistaken for it) and then constant issues with food not agreeing with me.
I'm coping, and I have aid that will come in to help out for other things that I can't do, such as basic home day to day cooking and keeping the house clean, and thankfully a healthy savings account to keep shortfalls from work being missed... and an understanding employer.
Sure, there are things that would make life easier and a bit more normal.
I can't get out to my car as easily as others to clean it off, and clearing out around my parking space is also a little beyond my ability. It's also out of the ability of my 84-year-old grandmother and disabled father, but my neighbours (when they can) have helped out. I wish I could do what others do when it comes to just picking up a shovel and clearing stuff out.
There are times when I can. There are times when I feel normal. There have been years and years when I felt halfway normal.
This year just isn't one of them.
This year I have been sluggish. My legs and balance are all off, which makes slipping and falling very easy. My migraines have been hitting with more frequency and they've been more painful... and lasting longer. My insides have been chewing each other out which makes food almost an enemy.
And I wish I could say I was the only one in Ontario in this same position, but there are thousands out there right now in Sudbury alone that are in the same boat.
I do what I can, when I can.
Have patience - I still exist. It's just this winter has been a bit rough.