For Mr. Eason please
Posted: Fri Aug 16, 2013 11:17 pm
Hello,
I have had M.E. for several years - went through the 'usual' losses/grief, than with the help of my GP gradually began to look for positives - just small things really - watched birds through the window when unable to do anything else, aimed to 'get dressed to the shoes' whenever I could, and wear make-up - to keep a little bit of 'myself', and 'worked hard' at keeping my spirits buoyant (ish) and tended to use humour as a 'tissue paper armour'.
Roughly 3 years ago following 2 medical assessments, and to use my then Welfare's Officer's words, a Tribunal which had a "harrowing effect on me" - it was all too much for me physically - and the emotional/mental impact was devastating. Thanks to a super GP, guidance from the ME Association and being lucky enough to take part in a research study for PTSD, anti depressants etc., I manage mostly to keep my spirits 'above water'. However, I hit a kind of plateau in that my DLA award was for 3 years - I know in my heart that I can't go through it all for PIP etc., so its been in my thoughts ever since the award and I dread losing DLA.
Part of the Medical Assessments were so personal (they said how could I be as ill as I claimed if I could put make up on) and the next medical referred to my missing teeth, and greasy hair. The Tribunal interrogated me 'robustly', and I came away feeling that my life had meant nothing (I've never achieved any 'greatness' - and had never really thought about it - just done my job as well as I could) the technique they used was very much like the old style 'beasting' previously used in the armed forces - but the Tribunal didn't re-build what they had 'smashed' or put anything in the place of the 'hole' that used to be 'me'. I had brain fog at the time and was exhausted, and felt like a small helpless child unable to defend myself. Of course, internally things have only got worse, it never crossed my mind previously about what people may or may not be thinking of me, now I know - I do my best not to cross anyone's path, and my working life target was to always do my best and to me - it makes very little difference whether someone sweeps floors for a living or invents the answer to climate change - I believe we all have our parts to play...except now I believe that everyone has a part to play except me.
I've been too worried to try and work on my spirits or to try and re-learn how to take pleasure in the 'little joys' - because the 'drop' to nothingness was so painful - so part of me does no longer want any little joys because the pain of the fall is too great.
I'm sorry I have rambled on - I'm hoping to give you a 'picture' because I would be very grateful for any suggestions please? I am wondering how I can preserve what's left of the little bit of the old me that I knew so well (I might not have been much it seems so I can't afford to lose what's left) for so long.
These days I manage to put on a reasonably cheerful outer shell when necessary, though inside I feel being stuck in 'Waiting Room'. And I guess I am stuck in more ways than one - I can't decide not to be ill anymore (I've tried and it doesn't work), and I know my financial 'end is nigh' due to cowardice about yet another assessment. I'm also stuck, in that, if I do try to make the best of the present moment and tiny joys, then does that mean my 'fall' will be harder? Or if I try to keep myself 'numb' will that give me an 'armour' for the struggles ahead please? (I used to meditate - but no longer - because that went againsty me too - basically I could calm myself in my 'safe inner place' - but then was told I looked too relaxed to be as anxious etc., etc., I now know that everything I 'was' was 'wrong', the illness is of course at the heart of it - and leaves me 'set up for judgement', and I just at a loss of how to fill the hole that is left and to protect myslef/spirits when the time comes (my DLA) runs out in the middle of next year. Apologies for the length of this. Best Wishes.
I have had M.E. for several years - went through the 'usual' losses/grief, than with the help of my GP gradually began to look for positives - just small things really - watched birds through the window when unable to do anything else, aimed to 'get dressed to the shoes' whenever I could, and wear make-up - to keep a little bit of 'myself', and 'worked hard' at keeping my spirits buoyant (ish) and tended to use humour as a 'tissue paper armour'.
Roughly 3 years ago following 2 medical assessments, and to use my then Welfare's Officer's words, a Tribunal which had a "harrowing effect on me" - it was all too much for me physically - and the emotional/mental impact was devastating. Thanks to a super GP, guidance from the ME Association and being lucky enough to take part in a research study for PTSD, anti depressants etc., I manage mostly to keep my spirits 'above water'. However, I hit a kind of plateau in that my DLA award was for 3 years - I know in my heart that I can't go through it all for PIP etc., so its been in my thoughts ever since the award and I dread losing DLA.
Part of the Medical Assessments were so personal (they said how could I be as ill as I claimed if I could put make up on) and the next medical referred to my missing teeth, and greasy hair. The Tribunal interrogated me 'robustly', and I came away feeling that my life had meant nothing (I've never achieved any 'greatness' - and had never really thought about it - just done my job as well as I could) the technique they used was very much like the old style 'beasting' previously used in the armed forces - but the Tribunal didn't re-build what they had 'smashed' or put anything in the place of the 'hole' that used to be 'me'. I had brain fog at the time and was exhausted, and felt like a small helpless child unable to defend myself. Of course, internally things have only got worse, it never crossed my mind previously about what people may or may not be thinking of me, now I know - I do my best not to cross anyone's path, and my working life target was to always do my best and to me - it makes very little difference whether someone sweeps floors for a living or invents the answer to climate change - I believe we all have our parts to play...except now I believe that everyone has a part to play except me.
I've been too worried to try and work on my spirits or to try and re-learn how to take pleasure in the 'little joys' - because the 'drop' to nothingness was so painful - so part of me does no longer want any little joys because the pain of the fall is too great.
I'm sorry I have rambled on - I'm hoping to give you a 'picture' because I would be very grateful for any suggestions please? I am wondering how I can preserve what's left of the little bit of the old me that I knew so well (I might not have been much it seems so I can't afford to lose what's left) for so long.
These days I manage to put on a reasonably cheerful outer shell when necessary, though inside I feel being stuck in 'Waiting Room'. And I guess I am stuck in more ways than one - I can't decide not to be ill anymore (I've tried and it doesn't work), and I know my financial 'end is nigh' due to cowardice about yet another assessment. I'm also stuck, in that, if I do try to make the best of the present moment and tiny joys, then does that mean my 'fall' will be harder? Or if I try to keep myself 'numb' will that give me an 'armour' for the struggles ahead please? (I used to meditate - but no longer - because that went againsty me too - basically I could calm myself in my 'safe inner place' - but then was told I looked too relaxed to be as anxious etc., etc., I now know that everything I 'was' was 'wrong', the illness is of course at the heart of it - and leaves me 'set up for judgement', and I just at a loss of how to fill the hole that is left and to protect myslef/spirits when the time comes (my DLA) runs out in the middle of next year. Apologies for the length of this. Best Wishes.