I’d got this. Mr Geek is working in London this weekend which means him leaving the house at 6.30am and not getting back until after 8pm. It doesn’t happen often and his employers are paying him extra for this unusual task.
I’d planned each day carefully so I didn’t overdo it. Today, Mrs G came over in the morning & we spent the afternoon either making the first stages of the kids’ homework models or having some nice downtime with them playing on the wii whilst I knitted / watched them. I even managed to dictate some more of my PIP form (Google Speech to Text I ❤ you.)
I was mildly concerned about getting a bath in before Monday, but as it turns out as soon as Mr Geek got in, he helped me run a bath and 8.30 is fiiiine. I don't need painkillers yet. (Can you hear that sarcasm? I absolutely do. I could currently sob with the various bits that are screaming).
The plan had been for tomorrow to get up slow, take the girls to hobbycraft to get the bits they need to finish their homework models, and possibly even stop at the garden centre for cake. Then have a nice afternoon of finishing homework and washing children ready for school.
Except the trains aren’t running past us tomorrow, because, there’s probably a Rice Krispie on the line or something. And in one short service announcement, Southern Rail have trapped me in my house for another 36 hours.
My wheelchair won’t fit inside anyone else’s car aside from ours, and my useless body doesn’t can’t even manage to propel myself half a metre along the pavement anymore, let alone to the bus stop. (I’m not even going to go near how mortifying it is asking an 11 year old to try & push me onto a bus).
I can totally get why people with EDS get labelled with depression because it’s just so fucking frustrating. I can’t take enough painkillers because I need to be functional in the morning, I grit my teeth to be functional then get trapped in the house. If I’m thirsty, I can’t even get a bloody drink for myself as I have to decide between carrying a glass and shuffling across the room. I’m so angry and have no way to let it out! I can’t even hit out or throw stuff because I’d dislocate my sodding shoulder.
I don’t want to live like this anymore. I want my old body back. This is not me. I’m sick to death of just waiting for the next dose of drugs. I want off this stupid EDS roller coaster.