I've been sick now for 20 months. I mean really sick, I have an auto-immune condition which causes me nerve pain every second of every day. But that's only the beginning of it, I'm also suffering spasms where my muscles tighten, these spasms are spreading, affecting more and more of my muscles and eventually they will start affecting my organs. (If they haven't already, I had an ECG and blood tests last week.) Oh, and I can't walk. I have a spastic gait which causes me to lose balance and the pain and effort of being on my feet is often too much for me.
People say that I am so strong, that I cope with it so well, that I am an inspiration, that I have such a positive outlook.
Little do they know.
My health is the least of my worries.
My family is so difficult to live with.
No1 son is autistic and doesn't do much for himself. He still depends on me for so much. He's not difficult often but when he gets moody he is. The main problem is how I worry about him, I worry about his health, I worry about his mental state, I worry that he's not living the life of a normal 29 yr old.
Eldest Daughter has had issues since she was 12 yrs old. She has the diagnosis, three of them to be precise, but she doesn't get any help. She works really hard and it feels like she has a relatively normal existence, but I know she's suffering. I don't want to go into too much detail but I do want to mention food. She has an eating disorder, not a regular one you can put a name to, but she has a really bad relationship with food and has done for many years. Every meal I make her she will complain about, but she still eats some and that's my objective. I try to please her, but it doesn't matter what I cook she's never going to be happy with it. She complains so much that often I'm the only one who eats at the same time as her.
I've accepted this, it's not her fault. We've argued so much about it but nothing ever changes. So acceptance is the only option. I cook her food, she complains about it. It's not nice but it's the way it is. It's like having allergies. Now, if you were cooking for someone with allergies you'd make exceptions for them wouldn't you? The food I cook my daughter is not going to make her sick, but I make exceptions for her, she doesn't like food, it's not my fault and it's not worth getting upset or arguing about. I let her complain and get on with it.
Hubby, (yes, we got married last year) has anger issues. I really wish he would get some help. He complains that we are walking on eggshells around my eldest daughter, but if you looked in from the outside you would see that we are all walking on eggshells around him. I have to try really hard not to banter with him because everything I say is taken as a genuine criticism. I remember when we used to laugh together. He has a lot to cope with and he lost his Dad which is difficult, but I wish he would just get some help rather than take it out on us.
On to the younger three. Lucy is also autistic and has frequent meltdowns, usually in rebellion against her Dad, she says such awful things to him. When he was happy they used to be so close, she was a Daddy's girl. Not any more though. I have to do everything for her. She also has fecal incontinence and we have to do dis-impaction quite regularly. It's like having a kid with constant diarrhoea, and I have to help her clean herself up and I'm left with tons of washing which has to be hand washed before being put in the washing machine. Oh, I could really do without this part of my life.
Leila is a typical girl, but she's also a 10 yr old teenager. She's so stroppy and ultra sensitive, you have to be careful what you say to her. At least she's normal, I think she's the one who's going to be a regular awkward teenager.
Joseph, I believe, has ADD. He cannot sit still for one second and he 'stims' all the time. He can sit and play minecraft for hours, but he doesn't sit still. I've had him assessed by the nurse and he doesn't show any other signs of autism. They didn't think he had any problems apart from emotional ones. Yes, he does get picked on by the family and left out a lot by the girls. I am constantly reassuring him that he is worthy. I am the one that looks out for him. The situation reminds me so much of my Mum and my younger brother. I find myself even saying the same phrases as her. This worries me as Mum was the only one who ever looked out for my brother and when she died he had no-one so he killed himself.
So, now you can see why I'm so brave and strong about my illness, I don't have time to think about it, my family take it all.
I do honestly believe that my family will kill me one day.
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