Monday, 18 August 2014

M.E. - A Work in Progress!

Hello everyone... I'm back... updating my blogs!

I thought I'd keep you all updated with what's been going on...

A few weeks ago I had my worst time ever with M.E. - it was a weekend, mainly Saturday and everywhere was so painful, I could barely move the whole day... couldn't physically go beyond slow motion, I must've lay down at least 20 hours that day... I'd been fairly busy and could see a definitive pattern. It's moments like these when you know it's not in your mind and it's moments like these that reaffirms you that there is something definitely wrong. It's times like these when you wish your family/friends/doctors etc could see how badly affected you really are...

Anyway, I had a pretty good week a couple of weeks later, kept my mind occupied. I try to refrain from falling into the trap of doing absolutely nothing (although not always possible) as my mind wanders. That's when negative thoughts kick in. Thinking about things like your current situation, current relationships and what the future holds... others thoughts!

Spending more time away from the computer definitely helps, I like to go out for coffees as it caters for a change of scenery... somewhere I can park outside without having to walk very far at all. My leg pains now go worse even after a few yards... I had a day out recently and didn't do overly much but was out for a fair bit... I was walking like a snail by the end of it... I couldn't physically move any quicker, my legs were giving up on me...

I'm very pleased to have published my book of course, that was a great achievement for me. I've had very good support and very nice comments about it too. Also, I've made new friends though I'm finding keeping up with messages a little difficult! I wish I could talk to everyone but it's not always possible... especially when you have so little energy.

My next project... a project that will take months and months is my personal training website. I've mentioned it before but gradually I'm collecting bits of information and coming up with new ideas for it. I'm also experimenting with very little exercise and a good diet, I've made decent progress so far considering how little I'm actually doing but again, it's a long project and my goal will probably take at least a year to reach. My body fat has rocketed up since I've had M.E. and I've not got the same muscle mass I once had... I'm a work in progress!

I've purchased a laptop, I'm going to store all my documents and information for the website on there. I'm going to store things like my book manuscript so it's for business really. I can also start taking it to coffee shops which will be good for me.

Singing... it's still a work in progress and I'm improving gradually, obviously I can't practice an awful lot but I'm working towards my grade 2 at the end of the year.

Lastly... WRAG (work-related assessment group)... urgh... they're trying to force me into voluntary work... firstly they wanted me to do a half hour train ride (plus 10 minute walk) then a full day of "motivational course"... and of course the travel back and also to and from the station... and also they wanted me to do this twice a week!!! They accepted it was too much for me in the end but the very thought is exhausting... they're now trying to push me to do 1 day a week fixing clocks for 4 hours! I can't even stay up that long and on the rare occasion I do, the payback is pretty intense. They have no idea. I've had letters from the hospital where I'm having therapy and WRAG just won't accept them... they're great letters explaining thoroughly my limitations but still they don't listen!

Anyway, that's what I've been up to!

Thanks for reading...

Keep on fighting!

Barry x


  1. WRAG, as you say, no idea. I used to get suggestions for re training courses. Some days I can't even boot up the computer!!xx

    1. Terrible isn't it... at least there's a lot of us in the same boat! xx