I am finding it very difficult at the moment, to manage to do the things for our group that I need to be doing. It is almost impossible to get my brain to retain information, I   keep forgetting things, I am thinking through a black painful fog!

  I have struggled to do my best, and hope that it all settles down soon as I am aware it is not good to sound low on  the phone when others ring me for support or information.

 I am very aware though that people forget we get poorly too and struggle just the same!

Hopefully the next blog I leave will be much more upbeat and I will look at this and think "what was I on about?"

We revisited Thoresby today with the group, for afternoon cream tea.  the sun shone, the tea was delicious, and we were all very relaxed and happy.

    I really enjoy our little trips out with the group, I know they take some getting together, and we never know how many turn up, but we always have a good time, and it doesn't matter if you are tired as so is everyone else.

I always come away thinking how priveleged I am to have met such wonderful friends in the group, and how much better it has been since I shared my illness with others who are the same as me.

If you are reading this and wondering whether to join us, do come along, take that step!

The meeting on Wednesday was really fantastic. We all arrived feeling the worse for wear, one by one we came through the door and it soon became obvious we all seemed to be having a bad week together.  Usually we take it in turns. Luckily this week we had our lovely meditation lady coming in Georgina.  

We all felt fantastic when she had finished, relaxed, our brain pain had eased, and on a high.

It just goes to show that if we try and relax our minds and let go, the tension eases which in itself eases the brain pain.

We have all decided to put time aside (only 10 mins a day) and do this at home.             

HELLO!

One thing I have realised is that I got M.E. for a reason, to learn different things. One thing I have learned is when you are ill you value things more, friendships, family, health, and you realise that the things you once valued are not neccessarily the things that matter.

The friends you had prior to your illness, may be different now, and the friends I have now support me and I try to support them. I now choose who I want to be in my life, as opposed to working with colleagues who I have to spend time with.

I  have also learned that sometimes you have to put yourself first. When I first fell ill there was no time for me, either to grieve, or cry or laugh, I just worked and put my feelings away and worked harder. Work was my coping mechanism, but now i have learned that it does not work anymore, I need to listen to the messages my body is sending me, in order to feel healthy and more stable.


 

The last meeting went well, more people attended, as the weather had improved. It was a member's 60th birthday so we brought a cake, and had a nice meeting.

I have been struggling brainwise for the past week. My brain feels painful and slow, and it is a bit like thinking through fog. I find this very depressing and frustrating as I keep trying to pretend I am 'normal' but keep making mistakes!

Roll on the summer when my illness seems better.

I wonder sometimes if anyone else is like me and worries about the activities I need to get through on the following day. I lie awake in bed worrying if I need to be somewhere or do something' and sometimes I am not sure if I make things worse for myself, I never used to do this prior to my illness.

I also try and remember sometimes what it feels like not to be exhausted. I cannot remember!

0ne of the most positive things I did when I was ill was to attend The Expert Patient Programme. This is a programme run by the NHS for people with long term illnesses by people who have long term illnesses. it is a new approach  which helps you manage pain, develop coping skills, and also interact with others who understand what you are going through.

If this type of thing would interest you contact  Dawn Anderson  either  by e mail

    pals@nottspct.nhs.uk

or telephone0800 028 3693