In limbo

The world isn’t made for people like us. We have become outcasts.

Magazines are full of exercise plans, the latest films at the cinema or the best new books to read. Cinema trips and reading books are beyond a lot of us sufferers at one time or another. There are diet tips to help improve energy levels and sleep patterns. Quick and easy recipes aren’t either of those things for us. Horoscopes talk about work colleagues…well most of us can’t work.

TV adverts from charities that need fundraising dominate daytime TV. (These charities clearly have enough money to advertise so frequently…) Our disease is never mentioned. Current TV adverts for nurofen about living lives bigger than pain are getting on my nerves. Nurofen doesn’t even touch the surface for most of us. Red bull is another one harping on about how the only limits in life are the ones you set yourself. Bull#$*^.

After a while it can all get you down a bit, even if you’re trying not to let it. It eats away at you over the weeks and months and years.

When the man comes to read the meter he comments how lucky I am to have the day off work. I once told the truth and said I was actually chronically ill. He blushed and the conversation died there and then. The postman can’t understand why I don’t answer the door when he knocks. He has worked out that I’m always here but if I’m not within a few metres of the front door I don’t bother trying to make it because I know I’m not quick enough to get there on time.

When I have answered the door with my walking stick in my hand people ask if I’ve got a sports injury. (I’ve decided this must mean I look incredibly fit and in shape ;-).) It seems to be such a foreign concept that young people might need mobility aids. It seems odd to me, here in my little bubble, that illness and mobility aids aren’t the norm.

We just don’t quite fit with the mainstream. Have you any idea how that feels? Of course these things don’t only apply to M.E. so perhaps some of you do.

The Paralympics highlighted people’s abilities wonderfully, but what about those who can’t do those things? No doubt ATOS will have wanted to declare all disabled people as fit for work after London 2012. I found it incredible that they were the sponsors…

I think I am becoming more disheartened and angry as time goes on. I have gone through a long period of accepting my limits but all of a sudden life seems very unfair sometimes. My friends have noticed it in my responses to their “How are things?” questions. Apparently I seem more resigned to it all. Flat. I don’t feel low, just fed up sometimes.

But I’m starting to feel like I don’t fit anywhere. I’m in limbo. I no longer class myself as bedbound because I only, touchwood, have the odd day of needing bed rest. But I can’t really class myself as housebound either. I tend to say I’m ‘mostly housebound’ anyway but with trying to get back to driving nearly everyday even that doesn’t seem accurate.

I feel like a fraud. I’m an inbetween. I have friends who are horribly poorly but because of the little things I am able to do I don’t think I quite fit in with them anymore. But then I am a million miles away from my more active ME sufferer friends…and even further away from my healthy friends. I can bake sometimes and I can drive some days now. These past weeks I managed to catch up with friends once a week. Thats great! I haven’t managed that since before my relapse in the Summer of 2011.

But shouldn’t I be using these extra spoons to do more productive things like empty the dishwasher, put a load of washing on, vacuum my own room, change my own bed? I feel guilty that those things are still beyond me and yet once or twice I’ve been able to drive to the post office and post a parcel. I’ve just asked my mum if she’ll reteach me how to use the washing machine. Maybe once or twice in the next six months I might manage to do my own laundry. But are my arms strong enough to carry a load of washing?

I’m fed up of feeling lost because of this stupid illness. My head wants one thing, my heart wants another and my brain and body want the complete opposite too. I feel so torn and I’m sure that is exhausting in itself.

This condition is so much more than just symptoms.

And with all of this comes the worry about benefits. Will I be deemed ‘fit for work’ now that I can make my own cup of coffee? Will my benefits be taken away because I manage to have a shower without my stool most days? How will I survive? Worrying is futile I know. These are just the things that go through my mind sometimes.

Oh I dont know. The word turmoil comes to mind…