I thought I’d better write something, even if it is jumbled and not as astute as I’d like; brain fog is rampant today.

I’ve had M.E for most of my life, since I was 11. I’m now 30. I’ve gone up and down, I’m currently in an O.K mode, I can fake being normal for a bit and do stuff like get out the house and enjoy myself, however I’m still ill. Every so often I convince myself I’m not and that I’m just being lazy and if I really pushed myself I’d be fine. I’m sure this is down to the crap I’ve internalised from years of being told I wasn’t ‘really ill’ and I just needed too try harder. Ironically I’m having a bit of a bad day today as I had two days in a row where I didn’t have my usual ‘siesta’ big nap in the middle of the day thing. It always takes a while to catch up.

I’m at the point now where I don’t think about recovery, I’m just trying to live my life in a way that I can manage to do some stuff and just cope as best I can. This is made immeasurably harder by the constant stream of ‘scourger rhetoric’ from this government and the media. I’m currently in bind as to whether I can work or not and if I can work enough hours to qualify for tax credits or if I can do permitted work on my benefits.

I also have depression. I have often felt I am in a difficult place as there has been, and continues to be, some prejudice within the M.E community around mental illness. It is no secret that M.E is not a mental illness and should not be treated as such but often some go too far in their assertions and stray into stigmatising and insulting language around mental illness; saying things such as ‘I’m really ill it’s not ‘just depression‘ ‘ or ‘M.E is a real illness’ – the subtext here being that mental illness is not ‘real’. I have no patience for that and I have yet to see any valid excuse for it.  I have blogged about it before and it is something that makes me feel unwelcome in many M.E support communities. Thankfully I have found some amazing support via twitter and I suppose it’s been so long I’m just sort of used to bumbling along on my own.

I’m not going to write some twee crap about illness elevating me to a state of saintly insight and use metaphors about ‘journeys’ and ‘tunnels’ and ‘woods’. I’m certainly not going to write a terrible poem.Or insinuate bullshit like ‘there’s a personal agency in getting better’ or become god forbid it ‘inspirational’. But I have M.E, it’s shit, the government is trying to cut support to people with disabilities and chronic illness just like myself. I’m not a scrounger. I’m not making it up. I don’t live a life of luxury on benefits. I have paid taxes. I am actually ENTITLED to support because thats the whole point of the welfare state so yes I do believe in a ‘culture of entitlement’ . I am also entitled to respect as a human being regardless of how much I earn or if I work or if I poop out sparkly rainbows or whatever.

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  1. helena says:

    Just read this after your post on anger and they go really well together. I have so much I could say about the ME community’s attitude to mental illness but the anger it makes me feel would melt my poor wee keyboard.

    I’m angry that my life has been dominated by ill health and that despite having no energy, I have to run twice as hard as well people just to stand still. I’m angry that being ill has prevented me from having anything I wanted in life and that people think i’m demanding to want things for myself instead of simply accepting scraps from their healthy table. I’m angry that the ME community are so bloody insular and competitive and resistant to change. I’m angry that the social model seems to exclude those of us that have physical and mental illnesses together and ignores the implications of fatigue. I’m angry that we treat sick and disabled people like shit on our shoe in this country and bay for more punishment for the sake of ‘tax payers’. And most of all, I’m angry with ME for simply existing…

    And worst of all, if I get much more angry, I will actually make myself ill and have to go and lie down. Thanks for giving a space to vent!

Feel free to comment, I do love a good debate

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