ME and Me

I am really wound up today, my heart is pounding, probably from sitting in Drs waiting room for over an hour, it was noisy, bright and uncomfortable, I feel rubbish and want to be able to rest to cope with Emily later, all I ever seem to do is ask her to be quieter calm down, when really we should all be more like her and not drag her down onto the depression of long term illness and stress.

I feel bad for wasting Drs time on what must seem quite trivial to her.  

No one actually believes that ME is a serious issue and her time would be better spent with people more in need than me.  I am just fed up of feeling rubbish but at the end of the day will survive whatever.

And if you have other issues you are seen quickly not messed about waiting for appointments and tests and tests this has been going on since March that is how important it is.

Well she did ask to see me again don’t think I would have bothered if she hadn’t said to go back or just said see how I go.

I need to focus on something else rather than being ill and trying to make people understand it makes things worse not better and you don’t get any sympathy or better understanding it just annoys people or you get others telling you they have worse problems (I am not saying they don’t).
Nobody notices if you are better or worse just expect you to be there and carry on if you are not around they don’t notice or care, I am fed up with it all, both normal people and ME people.  I need to do stuff that I want and not care about what others think want or need as nobody cares anyway and everything just seems a waste of time and effort and I spend all my time wishing I were doing something else or wanting to be well enough to do more stuff with Rob and Emily, not that there is much chance anyway as they are both out most of the time and then we have chores to do rest of the time.  Fed up of sitting on my own feeling ill and trying to fill time with stuff that makes me feel ill not able to rest or feel good when Rob and Emily around.

I put my back out on Monday so was in a mess, it is much better now, but still painful.  Rob had to work from home as I literally couldn’t move. I had physio last night and she said my lower back is awful!!  Going again tomorrow, costing me a fortune, illness is not cheap.

The ME awareness has been a hard slog, I chose to do the events with the children as I wanted to do the fun creative stuff too and as Rob says they are the next generation and the ones that we need to educate about things as our lives will be in their hands one day.  Adults already have too many set ideas and are harder to educate.  I was worried particularly at school that people might complain about me speaking to their children, but I doubt many of the children said anything anyway and probably just said they made crowns!  I did think about giving leaflets to take home, but it was too much work and that may have been a step too far for the parents.

I had planned to speak as well, but Rob takes over.  I spoke a bit more at school, than the other event, but not much.  I had so many ideas in my head, but as ever I can’t carry them out and Rob doesn’t think to ask me what I want, but he is used to speaking for me he doesn’t think that I might want a say sometimes.  It is also difficult to talk face to face about something that has such a big effect without being too emotional or depressing.

I spoke to my Gp about increasing Amitriptyline and she says its worth a try, the dose I am on is so low and have have been taking it for 7 years, it probably doesn’t have much effect now.  It’s mainly for pain, but she thinks it might help with my poor sleep too.  Last time I tried to increase I was too drowsy and woolly headed the next day and it caused issues with driving, but I feel like that already so is there anything to lose?  I have to have more blood tests to cover the things that weren’t tested last time like Vit B, Vit D and Thyroid function, it’s 2 weeks until test, 2 days after my birthday!
I think my birthday is also part of the issue, it marks another year of illness and no progress.  It is also my 14th wedding anniversary and the 9th anniversary of finding out I was pregnant with Emily, so quite an emotive day.  Of course being a week day I will be on my own most of the day, Emily will probably want a party tea, but then I can’t eat most of it, so it feels like everyone else gets more out of it than me, I am such a grumpy so and so.  It’s also getting to 44 and not having worked for 15 years and no chance of working or doing anything anywhere near useful or helpful to anyone.  I have been ill all my married life and all my daughters life, what sort of a life is that for my husband and daughter.
Then I feel bad for complaining there are people who are seriously ill, news stories all day about people who have died, or been badly injured, what right do I have to moan and feel sorry for myself? But I think at times like this I torture myself with these stories.
I need to do something to shake of this black cloud and change my focus for a while.

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