Wednesday, 13 April 2011


Last night I had two unexpected contacts. The first came from a friend whom I help out with various charity projects from time to time, the second was my sister.

My sister is in the grips of anorexia at the moment and is causing us all a lot of worry. She has been avoiding visiting my mother so no one knows exactly how ill she is. The fact that we spoke last night is very encouraging and she has said that she really wants to get better so she's taken the first step back to recovery. Thank God! I first found out what was going on from my Mother around Christmas, she had kept it from me for several months but couldn't cope with it on her own anymore and needed to get things off her chest. When I asked why I hadn't been told she said it was because I had enough to deal with. Why do people always do this? I knew there was something up and thought SHE was ill. Just because a person isn't well doesn't mean they should be kept out of the loop. Anyway I'm going to force the issue of contact with my sister and try and ring her at least once a week to see how she's going. I don't know if it will help but you never know. Maybe me being so far away will help her talk as I can't be there to constantly nag her, which I suspect my Mum tends to do. I can but try.

My second contact is a lovely gentleman who helped me so much when I was first diagnosed. He was one of the few who rode out the temper tantrums, frustrations and fear and let me believe that I still had a life and a purpose. We flit in and out of contact but will always remain friends (I hope). I am hoping to meet up very soon for a chat and a cuppa.

Woke up this morning with a badly twisted ankle. How I do not know, I just wish I would stop beating myself up in my sleep.

This morning's post brought a letter from the tax man stating that they are stopping my disability tax credits as I no longer qualify. Huh? Since when? A quick phone call, well when I say quick I had to go through numerous menu's and hold for 15 minutes before speaking to a human being, has now reversed the decision. Honestly how hard can it be for government department to talk to each other and share information? The most ludicrous statement of them all was 'If you are working why are you claiming benefit?' Because DLA is a benefit for disabled people who still want to work and need a little bit of financial help to do so, Moron! I ended up explaining DLA and what it was for to someone who was meant to be advising me!

That's another thing with PH, you are constantly fighting something or someone. The main war of course is with your own body but there are lots of other little battles raging around it, mainly with the benefits agency, NICE and the PCT. And just when you've won something and think you can relax a bit something else crops up to take it's place. The worry and effort is utterly exhausting and to be honest I'm not sure how much longer I can keep fighting.

I've sent a little olive branch out to someone today, I really hope it starts to leaf.