Sometimes because I don't consciously think about being disabled, I wonder ,'Am I really that bad?' I have thought about going without my medication for a day or two to see but thankfully thought better of it. My first medication of the day no longer seems to work as well as it used to and my joints take until about mid-day to get going but even then I still feel a numbness in my joints for the rest of the day. The only way to describe it is it is like your face being numbed up when you go to the dentist and it slowly comes back to life except I never quite get full mobility. Beauty's computer is on a small table with a small chair so if you have to do anything for her you have to bend down and getting down there always seems like a good idea but getting up again is just not so easy. I also have damage in my lower back from a fall and walking a few steps is OK but any more seems to irritate and the area of damage becomes swollen and painful. When I have been sitting down for even for a few minutes my joints seize up and getting up and walking around is quite difficult. My children find it quite funny and they say that I look like an old lady hobbling around! I think it is quite good that they see my disabilities in such an ordinary way and accept them( a little help wouldn't go amiss though!) but I think because they can't understand the pain and lack of movement they do not always appreciate the severity. It has even been suggested by one of them that I should go back to work though who exactly would employ me at the moment would be a difficult one to answer! Any wakeful nights with Beauty leave me considerably less mobile the next day and with my lack of mobility I would probably be a Health and Safety risk but then I suppose that I could use my wheelchair. I think the worst bit is that half the week all I want to do is get Beauty to school so I can come home again and lie down for a nap just to recover from the sleepless night!
And who I could get to care for Beauty whilst I worked would also be a problem, I can't get respite care now. Any employer would laugh me off the premises.
Perhaps I could work from home.
Perhaps I could write a 'miserable childhood'(mis lit,painful life,real life) book as they seem to be selling quite well at the moment. Anonymously of course!
I know I hate reading 'miserable childhood stories' but do all these people who write them really do it for cathartic reasons?
Beauty had a small episode of night terrors last night but she went back to sleep quite quickly. Even with the very dark curtains on the window I still think that the window is an issue for her and she is worried by it. Even though Beauty is very autistic in lots of ways she still does some very normal childhood things, she gives hugs and kisses if she wants something badly enough, she is very aware of clothes and loves wearing pretty things and of course she is afraid of the dark. If she sleeps on my bed which is further away from the window then she is a lot happier. We have three living rooms downstairs since the extension was built and the middle room has wooden double doors to the lounge and wooden double doors with large glass windows to the back room but no outside window and Beauty spent a few years sleeping in there with no problems but the room was stifling hot all year round and difficult to sleep in . Perhaps I might have to rethink bedrooms again!
Sorry I am late blogging today but I am just off to pick up Anastasia from Stanstead airport, just a tiny road trip of 6 1/2 hours. I'll be back!