Wednesday, 27 April 2011

New cards

So having got the whinging moaning post out of the way I thought Id show some new card photos.
I cant show many as some are for birthdays that havent happened and some are secret sister cards which if I show kind of ruin the whole secret sister plan.

Anyway here are some photos

Hmmm long time no see

and its not really because Ive been ill for a change. Dont get me wrong Ive not been well but other things have over shadowed my life.

Last year I had a DLA tribunal which I lost. Until this year I really wasnt well enough to do anything more than shut myself in my home and cry. This year however I found my anger. I wrote a letter to the heads of the government parties and the leader of my local council. I didnt expect a 'hey we got it wrong heres your money' reply but really wanted them to know how I felt and how Id been treated.
I had a couple of replies but nothing helpful until my local advise centre got in touch. The first phone call was a bad time. Id been away with family, couldnt think and ended up in tears and passing the phone to my dad. The second I wasnt too bad. Still cried but managed to explain that I didnt want help to appeal the tribunal as I had understood to appeal it had to be on a 'point of law' and even if I disagreed with proceedure I was sure the 'law' was right as it was done by a judge. Mainly I wanted to know where I went from here. Do I re-apply or am I blacklisted as a 'cheater'?

I was told to re-apply as the judge and doctor I had worked together on a regular basis and had a nice routine.
First I was asked if I was better, worse or the same as the time of renewal. I was then told I had to answer from the renewal time only. As I said I was worse this meant they could ask things after the renewal and say if I could do that when I was worse I could do it when I was better. To me I spent the whole tribunal being totally confused as to why I was being asked things after the date and what relevance they had as Id already been told that after the date was irrelevant.

I spent the whole tribunal in tears and getting more and more upset and distressed. The guy from the advise centre said if Id had a different judge and doctor I would probably have got DLA. Thats no help to me!!! The fact that I now know that different judges and doctors make different decisions just makes me angry. I had no choice on who heard my tribunal and all I know is I was treated like a lying cheating thief. It destroyed the limited confidence I had and basically sent me into what I can only call a 'breakdown'

I didnt see my doctor at the time for many reasons. I felt so useless and worthless I didnt want to leave the flat, I was scared about what the doctor might say, I was ashamed at how I couldnt cope, I was keeping up normal actions for friends and family and most of all I didnt want to admit how bad I actually was.

So now this time has passed and Ive been told to re-apply and Im scared!!! In my heart I know Im telling the truth about how my life is but I cant help that feel that as Im not an idiot and dont put myself in danger Im not helping myself. I believe in self help and self management but that goes against the DLA rules and by follwing that even though my life is far from normal no one cares!!!

Saturday, 2 April 2011


You know confidence is a very strange thing.
As I kid I was so sure I was right all the time which gave me the confidence to say what I thought even if it was wrong and upset people. I got told I was brutally honest and couldnt lie to make people feel better no matter how I tried.

I was brought up by parents who believed that listening to what children say is the right thing to do and then if you have to correct them you do it in a nice way without making them feel bad.
That meant that sure I said and did the wrong thing as a kid but unless it was really bad I was just told why it wasnt acceptable.

I was burnt as a kid and that destroyed a lot of my confidence. I went through secondary school feeling inferior but then realised that I was ME and who ever thought I wasnt good enough had faults and flaws of their own. Mine were physical but who knows where theirs were. I remember going swimming and basically staring out people that stared at my scars as if to say yeah so what????

I know thats not a 'normal' reaction and I went the complete opposite after a while. I was so self conscious I couldnt bear people looking at me in case they were judging me on how I looked..... scars, weight, whatever.

I re-built some of that confidence until I got glandular fever and never recovered. It made me realise people would always judge me on how I looked and acted. If I was fat I was just lazy, if I was confident and self assured I had a mental issue that meant I didnt want to deal with life. That made me retreat into myself so no one could judge me.

I became very depressed and self obsessed in a why on earth would anyone bother even talking to me because Im useless kind of way

Last year I did something called the expert patient program. My first meeting I went to feeling oh boy what now?? as I had done so many other things that were supposed to 'cure' me and hadnt. I went along feeling like a failure before I even got there.

It was an odd course really in that I thought it was going to teach me how to be a perfect patient.... the kind of person the doctor hates as you turn up with loads of literature they havent seen and immediately dismiss. I very soon realised that being an expert patient was different. It was about being in control of my illness rather than suffering from or letting my condition control me. Sure theres no cures but how I feel about things is the main thing.

Half way through the course I said I would be interested in volunteering to help with the course. At that point I kind of thought I was offering to help out while others delivered the course but somehow I found I had volunteered as a tutor!!

After the initial panic there was a period of amazement that someone had seen something within me that they thought I was capable of even if I wasnt sure. I did some training and very quickly realised I couldnt sit in the background letting others speak and saying nothing so the training was the right thing.

Ive only done 2 days of training and have to say they were totally exhausting BUT and there is a big BUT!!! Ive realised I can stand in front of a group of people and tell them what I believe. Theres no waffle like there was when I sold car insurance. No pressure I KNOW this can help and Im not forcing anyone to do it. I dont even care about people looking at my HUGE frame at the front.

Dont get me wrong its very scary and I dont think my heart has ever beaten so fast in my life but up to now Ive only had good comments and when you get good stuff from your peers and not just people who dont know any better thats a great feeling!