Situations like today are ones that really make me resent my disability and my inability to do much for myself. With me relying on helpers all the time to do practically everything for me I really struggle when they aren’t here. Although I try to just live everyday as it comes most nights I go to bed wondering if I’ll get out of it tomorrow. Now that might sound a bit morbid, but I don’t mean it like that. Everyone is unwell sometimes and not able to go into work and have to phone in ill, but when it happens to my helpers it means it affects me too. I wake up in the morning sometimes not wanting to look at my phone because I know if I do and someone has texted me saying their ill then my day is ruined. Days like today are the worst when I had plans to meet my friends and the sun is shining I’m lying in my bed wondering every hour is someone coming to help me get up.

People crave to be able to lie in their bed all day and chill, but I hate it. Of course if the choice was mine and I wanted to stay in bed I’d probably love just watching TV all day, but today isn’t one of those days. Today I’ve read the other half of my book that I had left to read, watched last nights Eastenders and checked my emails which took me up to 3 and a half hours since I was meant to be up. And I’m bored. Now I know though that I won’t be getting up until later on tonight for only half an hour so at least I’m not just waiting to see when someone is coming. I might try and have a nap because although I’ve been in bed since 9 o’clock last night and I think I had a fairly good sleep, I’m shattered. I’m shattered because I wasn’t able to wake up gradually this morning, I was awake and the thrown into stress because I didn’t know how my day would pan out and if I’d ever get up, or if I’d be in bed till the following day when another helper is meant to start.

I say I’m going to go for a nap but chances are I’m just going to lie here and watch the minutes go by until someone comes and try and occupy myself with whatever movie I can find on Netflix. Because the truth is my body is aching. I’ve been lying in the same position since 9 o’clock last night and I can’t turn myself over. You might be thinking am I on my own why doesn’t my parents help me and if I’m being honest I don’t want them to help me. From the time that they used to look after me till now my care needs have changed. My body, especially my legs I feel are more fragile and the only people that know how to get me comfortable are the people that help me everyday, and they are my helpers. Turning me over may help me for half an hour or something but what would really help is sitting in my wheelchair, being able to do something other than staring at my bedroom wall and doing whatever on my phone. It would help me physically and mentally.

I not writing this post to get sympathy or anything like that. I know there are worst things than being stuck in bed, at least I have my phone to keep me occupied and my mum is here if I need anything. But I just wanted to show that even though I’m very positive about my disability, I do have bad days. I do have days where I wish I could just jump out of bed and get on with my day without relying on someone to help me. However, I don’t let these days defeat me. I just think about when I do get up, what I’m going to do. I thought that by the time I published this post I would hopefully be up, but I’m not. I’m still stuck in bed and it isn’t looking like I’ll get up till later on tonight. I’m looking forward till tomorrow and the fact that I have a great day planned because I’m meeting a friend from university that I don’t get to see very often and we’re going out for lunch and drinks. Those are the days that I don’t take for granted and enjoy, because days like today make me be thankful for the days that I do have helpers with me where I can do whatever I fancy doing.

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