Sticky Blood-Hughes Syndrome Support
8,165 members8,386 posts

I don't know whether to laugh or cry!

Some of you may remember that I posted a blog a couple of months ago re my agony of waiting to hear if I was to be awarded ESA or not. I had my medical on the 6th of February this year. Well to cut a long story very short I received a phone call earlier this afternoon, almost 9 months to the date of my medical, to tell me that I have been placed in the support group. I cannot tell you the relief that I’m feeling. However, I’ve just opened an email with a copy of a letter from my Rheumy who kindly wrote to them offering his professional opinion, yet again. I feel really shocked by what I read. For a split second I thought that there must have been a mistake and that he was talking about somebody else! He didn’t exaggerate or sway from the truth but I don’t think that it had ever dawned on my before quite how ill I actually am. So for this reason I don’t know whether to laugh or cry!

7 Replies

Glad to hear u got ur mony back the system is very flawed corupt, unfair ( lets pick on the sick there to sick n scared to fight back) the goverment would gladly let us wilt n die if they could get away with it, i am in the same situation, and at the moment they have taken £30 a week off me , so no coal for me untill further notice hospital inbound , i think you should be having tears of joy ,for your good news try not to dwell on how ill u r it will only bring u down ,!!


I'm so sorry that you've had £30.00 a week taken off your benefits. I do hope that the situation will resolve itself soon for you.

Thank you so much for your kind words they mean a lot to me. xxx


Hi InSpain: I remember how worried you were. I am so pleased that you received the placement you wanted and the long, stressfull wait of the decision is over. Don't worry about how sick you are. You have to live your life in the NOW. NOW, you just received the optimum answer to a long awaited decision. (Insert little winners dance here). Enjoy the positivity! Right NOW you feel pretty good, right? Just enjoy it. The very fickle thing about APS is that you never really know how sick you are or for how long. As I was recently reminded myself, it is a fickle, fickle disease. So don't worry about what you can't do anything about. Do the sensible things I assume you have been (healthful diet and living habits) because you're feeling well.

I hope you stay that way and that you don't have to go through this placement thing again soon. Incidently, it would not be the first time I have heard of a doctor exaggerating a case in order to get the best care for his patient. They are locked in by the system as much as the patient is. Working together is the best defense.

Smiles and jumps for joy to you!



Hi CanaryDiamond10!

As usual you know the right words to say, and they are all true of course. I do have a motto which is "Live for today, for tomorrow may never come!" That motto, I believe, could be applied to anyone whether well or ill. I think to be honest I was just probably stunned that I'm going to be paid benefits! After the very long wait that I've had I thought that I wouldn't be awarded anything.

I am very grateful to be alive as I sometimes feel that I live on a knife edge. However, I won't let that put me off continuing to enjoy all the things that are important to me, such as my lovely hubby, my very supportive friends and of course all the support that I receive from everybody here on this site. :-) A big THANK YOU EVERYBODY.

So YES I will jump for joy as you suggest! (But only a little jump in case I fall over and break another bone!!!! ha ha ha ha!!!!!!!!!)

Love from here InSpain xxx


I'm glad you are getting good results :)

I know what you mean the 1st time I actually saw stuff in writing from someone else I felt the same! I know I'm probably in denial a lot of the time as I just want to get on so suffer a lot from doing things after I've done them...!ut that's me!!

Keep smiling Sue x


Hi and well done to you. I, too, got put in the support group on appeal, and although it was what I wanted and was obviously the right decision, I couldn't help but feel just a little bit sad. It's like the authorities looked me up and down and all agreed that, yes, you are not quite up to scratch, and we will put you on the pile for 'not needed any more'.

But - I am over that feeling now and getting used to my new 'normal' life. I dismiss feelings of low self esteem as much as I can and my husband and sons think I'm the bees knees, so thats all that matters.

Incidentally - why do they call it the support group when there is no support at all? This site and my family are my REAL support group!

Soak up a sunbeam and send it to me from InSpain!! Take care, Larraine x


Its a double edged sword isnt it? I remember feeling like that when I fought for 2 years for my retirement pension (it was minuscule as i was part-time). There was the jubilation that I had finally won but the sadness i was leaving a job that I really loved and wanted to do but knew deep down I could not continue doing.

Just think of all that sunshine you can enjoy now without any of the pressure.


You may also like...