Most people would give anything for some time at home away from work. When I was working, sick days felt like a holiday – I truly had no idea how anyone could find it boring. That was until all of my days turned into sick days.
Now days I spent the majority of my time in one of two places – my bedroom or the living room. I spent literally most of my times staring at the same 4 walls, and it feels like torture. I have watched everything I could think of watching on TV, I have listened to all of my audiobooks multiple times and I don’t have the energy to do much else.
Everything that I used to do is now too difficult to manage. I am living with the feeling of someone smashing an axe into the back of my head whenever I am upright for more then 10 minutes, I have 3-4 migraines a week and all of the other wonderful pain and feelings that EDS brings. All of these symptoms are made a million times worse when I can no longer leave the house enough to break up my day, or do any of the hobbies that kept me afloat. I now spend hours in the day asleep because I am in too much pain and too exhausted to do otherwise.
On the rare occasion I get out of the house, it is like a weight gets lifted off my shoulders. I can breath again, and life doesn’t seem so dark. Yet inevitably I know that there will be a payoff for pushing myself, and know full well that that payoff means I will spend the next 3-4 days imprisoned at home once again.
I desperately want to be working, to socialise and to keep up with the hobbies I love. I want to be the person I was 10 years ago. I want the highlight of my day to be getting out and doing something, not a carer turning up for 10 minutes to do the things I am unable to do.
I keep on thinking that if I just push myself a little harder, or ignore how my body feels that I will be able force my body back into normality, but sadly it just doesn’t work. God knows I have tried. Each time I push, my body pushes back harder, and once again I am stuck lying down trying to get rid of the severe pain in my head and back.
I long for a normal persons sick day. This isn’t a holiday. This is hell.