Blogging About My Illness
I will be blogging about my illness.
And the horrible things that came with it. I feel like there are a lot of things I want to say and a lot of things I didn't know that I wish I had at that time. But I want to get my ideas and my thoughts across positively.
I don’t really mind telling anyone my horrible TMI moments. Though I’m not an expert on anything. Especially not M.E. If I was, I wouldn’t have gotten so bad perhaps. It seems to be a cycle. And a cycle I'm trying to ward off.
But I was left completely alone when I became bed-bound. I was given referrals to see consultants and I left the house 5 times in the first 7 months of 2015. All for doctors appointments.
All holding onto the arm of my 6’8” hulk of a brother who could support my weight and mum on the other side to balance.
I was never given a care plan. And I sat in offices with raging kidney infections and a mouth full of ulcers just to be told to “think positive” and to “change my mindset”. That I was doing it all to myself.
I was taken seriously after my diagnosis of P.O.T.S.
Fainting was a new thing for me.
Ending up in A&E whenever I tried to push myself (like going down stairs) with a massive heart-rate and extremely low blood pressure. But it was something the doctors could measure (still blame it on caffeine for a while, even though I hadn’t had a cup of coffee or tea in a year and a half) but I was able to get financial assistance through that.
But safe to say without my parents, Id have been pretty destitute. And honestly, my attitude towards life was always questioned. But I think considering how poorly I was treated, I thought I did quite well not to slap anyone.
I had a new boyfriend. I had a novel I wanted to write. I had friends who wanted me to visit America. It was beyond insulting to say that I was doing this to myself for the chance of benefits.
But the main thing is, I know there are people who are going through the same thing. This was only 2015, and I might live out in a small town, but there are people in smaller ones. People in exactly the same position as me.
So basically the advice I’m writing is for me in early 2015. It wont fit everyone’s situation, but some bits might be helpful. And it would have been helpful to me back then. It might be a bit gross at times. But illness is gross.
And it can always get better.