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.