January 2018

So, I haven't written for a while.
If I'm honest, I am massively struggling with a lot of things at the moment. I'm getting better regarding my Dad's death. Obviously it's still difficult, I just re-read my last entry here and broke down but that isn't happening so frequently now. We went out and celebrated what should have been my Dad's 60th birthday as a family, and it was good.
My chronic fatigue has been getting a lot worse as of late and I think there are a few factors: my pain is much worse than usual (which I am pretty sure is due to my painkillers just not doing the job any more) and I'm not sleeping so well because of said pain. I wake up in the night, if I get to sleep at all, in absolute agony. There's really not much point even taking the tramadol, except to stave off withdrawal, because that's not a nice feeling. So, a doctors trip is in order soon. I hate going to the doctors and asking for painkillers. Most GP's haven't heard of EDS, and they also don't generally expect a 22 year old young woman to be sat in their office complaining of severe chronic pain. However, I say who decided only old people can have chronic pain? I think it's an unfair assumption to make, one that both inhibits my ability to access the healthcare I need, and also erases my existance and my suffering.
It's hard to explain my health issues as sometimes I actually feel embarassed to discuss them: because I feel like people will ask me questions such as "so why do you work then" or similar. The answer is I am simply stronger than you could ever imagine. My strength is unmatched and it keeps me going, even though simply being at work can cause me such deliberating pain when I get home.
Chronic fatigue is so hard to explain, simply because people think it's just being really tired. It isn't. It's having to make sure you set an alarm to get up at like, 11am or 12pm because without one you will wake up at 2pm, after around 12 hours sleep, and still not feel refreshed. It's being awake, but needing to give myself an hour to get out of bed. It's getting up to feed Socks, use the bathroom and go back to bed for a while. It's not having the energy to get a drink, so I get thirsty. It's so many little things that can become overwhelming and affect my life in a big way when they are all coupled together.
I wish I were a cat, that seems like a pretty sweet gig. Get fed four times a day, and get to sleep a lot. Sounds ideal, really.