Monday 30 April 2012

This Blasted Illness

I can't say I'm coping very well atm. I've started taking dihydrocodeine regularly because it helps my anxiety, and I pray I don't get addicted.

I had my ESA medical on Friday. Thanks to Benefits and Work I was able to get it recorded. The day before (because of the need to set up the recording equipment) my time was moved from 3pm to 1pm. We arrived 12:50 ish, and weren't seen til nearly half 2... Turns out they now read your ESA50 before you go in, which was quite surprising. And of course took the guy a long time with 30 pages! It was good though, as it meant he understood a bit, and was able to ask relevant questions. And (maybe just because of the recording?) he treated me and my husband with respect, which was a nice change from all the Atos "practitioners" Mr has seen. I was even in the same room (and requested the same chair!) as my IB medical back in 2008.

As for how it went? Well, it all depends upon the tick boxes. I'm hopeful, but you never know. I need to be in the support group though, so even if I'm put in WRAG I'm going to appeal :( I cannot handle the interviews etc, they will kill me. I would say if I don't kill myself first, but I could never leave my husband.

My DLA tribunal is tomorrow, which is scary. At the end of the day, it's not the end of the world if I lose. Our finances stay the same. But I fit the criteria, and I will find it very difficult to accept if they turn me down. It's scary. I just wish the medical profession would offer me more support.

My head problems have got worse with all the benefits madness. My anxiety has got worse, my anger is a whole new level. Just really struggling.

I've been on several new homeopathy remedies this year, but none of them are quite helping me enough, so I don't know how far we will go. I only know that if I am taken off everything I will crumble.

We keep discussing proper anxiety medication. I may be nearing that point. I want to find an end to benefit battles and see if I can improve by myself. But if I can't, or they continue, it may be time.

Mr commented that it's adding years to my illness, fighting all these battles. I can't handle the words. But it's so true.

It's been 12 years, and yet I still can't handle it. We should be earning a living, buying a house and having a family. We shouldn't be going to court to get money to live because we're not even well enough to cook for ourselves. My OCD is becoming more apparent too, as we become more dependent on carers and I can't let go. I feel like I just need to shake myself and all my head problems and physical problems will go away, but they won't. I know I will be healed one day, but right now I can't accept being ill. I'm so angry.

And yes. 10 months later, I still have thrush. I have started doing gentle back stretches on a gym ball though, and I think it might actually be helping my back pain. There has to be hope somewhere?

2 comments:

  1. Hi I have just come across your blog and immediately felt connected with you.
    My husband and I both have this debilatating illness and our 3 children are also showing signs of it.
    I understand your everyday struggle and frustration, anger and feelings of despair as no one seems to have any idea what everyday life is like living with this invisible illness
    In a way it was comforting to find your blog to know what we have known all along that this illness is affecting so many lives it is real and we are not depressed neurotic people just ordinary people wanting their lives back
    Hope we can talk soon teresa

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    Replies
    1. Hi Teresa,
      Nice to "meet" you!
      I'm sorry to hear ME is affecting your family so very much. 2 out of my 3 siblings also have ME, as well as one of my sister-in-laws, so I understand it being in the family!
      I hope we can talk more as time goes on, but please don't take it personally as I keep my identity secret, it gives me an ability to talk more openly about the benefits system.
      If you're looking for more support, can I recommend this forum: http://www.mecfsparents.org.uk/cgi-bin/yabb2/YaBB.pl for you and your husband?
      And http://ayme.org.uk/ for your children?
      They offer great communities.
      Hope you're having a good day,
      Mrs x

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