DD has been declining rapidly all year and is now seriously unwell and struggling to find the energy to do anything. She became ill about 5 years ago and I remember how scary it was then seeing how reduced her energy was and how little she could do. God its almost laughable now to think we would both kill for her to be only that ill. She tended to come out with me every time I went shopping just to get out of the house... I did find it a bit claustrophobic as she was always there but now I would love for her to have the energy to come out. Last time we went to a shop...only M&S so nothing exciting, she found it all so overwhelming in terms of noise, visual stimuli and too many choices. She has effectively given up going into town as its just too noisy for her and she struggles to cope with so many people being around. This is the girl who would go into town every weekend with friends just to be in town!
She has so many new symptoms...pretty much constant nausea, anal leakage on occasion...that one she loved obviously. Her weird spasms are getting more constant...she gropes my boobs all the time and any other part of my body she can get to. She suckles, my finger mostly. She swears and comes out with appalling phrases...good job I totally know its not her or I could get upset. All of this is embarrassing her sooo much and really upsets her. It kind of feels like the after affects of a stroke, Tourette's and Alzheimer's....not a great combination for a hyper bright 22 year old!
She is spending increasing periods in bed semi dozing which doesn't feel like a good development. One of the worst aspects of her having ME is the lack of any information about how her illness is likely to progress but I don't see anything good on the horizon. She is declining so rapidly this year and I can see that continuing into next year. She can only decline so far before she has no further to go and dies. Maybe not in the next couple of years but it is coming and coming rapidly.
I spend most of my time trying to support her, emotionally mostly though she does need lots of physical support. The problem for her comes when she is too tired to have anyone in the room with her so has to cope alone. Not good. My emotional needs are met by DD and DS1 when he can. My DP is a total arse and had already stopped talking to DD before she became ill and hasn't stepped up to the mark now she so very poorly. He won't even talk about her illness with me...when I have tried to talk about anything to do with her he walks away, talks over me or deliberately changes the topic. He is utterly useless and I despise him. If I could afford to throw him out believe me I would and DD and DS1 would cheer as they both have no respect or affection for him at all.
My parents are useless, my DM refuses to accept DD is actually ill and will tell me every article that she finds with some ill researched and badly written report on ME. Trying to prove what, I don't know...that DD would be well if she wanted to be maybe. She has said that if DD was 'more positive' and 'relied less on her wheelchair' she would get better. When I have tried to explain ME is a chronic illness...like diabetes...my DM's reply was 'but diabetes has a physical cause'...that was when I totally gave up on her and have very limited contact now. Neither of them has seen DD since, and won't unless DD decides she wants to. Apart from anything else DM would be offensive about the fact DD has put on weight this year...I think at least a portion of it is bloating from residual kidney problems but all my DM would see is FAT and she would be nasty. So she can keep away from DD who has enough shit to cope with without DM. DF is fine but loud, which DD struggles with and as he is a total enabler for DM he has to be kept away too. If they don't like it tough...they offer no support so can stuff off. They aren't coming for Xmas which won't please them but that's not my problem...as you sow so shall you reap!
My DB is similarly useless for support...last time I saw him I was talking about DD and he said that he didn't want to hear about her because it was 'too depressing'. Well that's his choice but I don't need that kind of stupidity in my life and I can't see him loosing any sleep because I'm not in touch anymore.
I am struggling tonight as DD is in pain and so confused and unhappy. There is nothing I can do to make it better which as a mum is all I want to do. I am also really worried about DD's future, its going downhill so very rapidly and that's worrying. No one ever said life would be fair but this seems to be so far past just 'unfair' for DD and I would give anything for her to have more of a life. Its a good job DD is so amazingly brave and copes so awesomely with the crap that is ME.
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