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Friday 26 November 2010

What the hells wrong with you today.


What the Hells the matter with you today, Watch where your walking, Just think, What have you been doing all day.

Do these words sound familiar to any of you. These are the words some people here on the rare occasion but to me it is daily.
Some people find it hard to get to grips that maybe i don't feel well and that maybe i try my damn hardest to do what i can. I am not being lazy, i am not being clumsy , i am not ignoring you, i am not miserable, i am not being rude.

It is because maybe i am suffering and don't want to show it to others and i try to keep it to myself. I seem clumsy because i have trouble negotiating my steps and use all my efforts to keep my balance, I haven't done all the jobs you have asked because i have exhausted my self and i have needed to stop at intervals throughout the day to rest. Sorry i didn't think because my mind is not my own any longer and i feel vacant a lot throughout the day. I am not miserable, i am just trying my hardest to cope with the pain and maybe i am trying to keep it to myself as i don't want to burden you. I am not being rude, i just sometimes either feel like i don't want to socialise or sometimes i feel so drained that i just need to rest my body.

I know i am not alone with these comments. Sometimes loved ones try to ignore these facts as it helps them cope as well.
It is like a breath of fresh air when you get someone who really cares and is really interested in helping you all they can.
I had a couple that i know approach me the other day and took me to one side so others could not hear and ask me how i was as they said they could see how i had changed.
As usual, i said I am fine , don't worry about me. This is something i have become accustomed to as i don't really have anyone to listen to me and share my worries and concerns.
I felt deeply touched by this couple offering their help and a ear whenever i needed it. Whether it was genuine or not, the thought was there. So thank you ( you know who you are ).

That's where these blogs and forums help us all as we all share the same problems. That is why awareness is needed here in the UK as it people will understand the torment we go through daily.

If you was diagnosed with say Multiple Sclerosis, people would understand as it is widely recognised and there is help out there for those sufferers.

God bless you all and thanks for reading this.

Thursday 11 November 2010

Chiari Meet up

Hi everyone, just to let you know that i am organising a get together for all sufferers and partners/carers/family. I posted it on Chiari UK but this site seems to keep going down for some reason.
Anyway i have arranged for it to take place in Feb 2011 Dates either 19th Feb or 26th Feb which are both Saturdays. It will be in Birmingham in a chosen hotel just off Junction 7 of the M6 so its accessable to all. I have phoned a number of Hotels and have found some desent prices. Perhaps i could have your views on the dates so i can get it booked and the number of people who care to attend. please contact me via email daz.norton01@blueyonder.co.uk. I look forward to hearing off you. Meanwhile i will endevour to post it on the Chiari UK.