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Yes...this is ALL about me, and mine. Marvellously self indulgent, feel free to tell me how splendid I am, leave comments, nice ones please, I have little kids and teenagers who can do the rude stuff. I am a grandma, to the glorious Joshua, I'm allowed to look frazzled and weary, I earned it. The older I get, the more I see that hanging on and being patient is worth it! They ( whoever 'they' are) are so right when they say you never know what is around the corner, it isn't always an articulated truck! It is vital to make the time for making memories, friends are the greatest treasure, I love mine. I am rich!

Wednesday, March 12, 2008

Take a bow internets.

Today was a good day. Whenever I get to write that I am both thrilled and sad, thrilled because hey a GOOD DAY! Who wouldn't be thrilled? Sad because....well it being a good day is rare enough that I make a big deal of it.
Today was a good one, it began with hearing Elijah shout into the kitchen " Be back in a minute Elvith!" Who wouldn't think that was a great way to start the day? He was singing, with the aid of a whisk and Elvis on the iPod, playing very loudly through the speakers, and he had to pee, not wanting Elvis to be offended or get bored and leave, he made sure to let him know that he would be right back. The fact that I get to hear these things every day is music enough to my ears.
Today was tribunal day. The day I thought I get to have my say, let the government know that despite the insignificant little man from way back in August saying that I was not depressed or anxious and that I was perfectly capable of holding down a full time job, I am in actual fact useless. What a bizarre experience. Who, in their right mind wants to prove to strangers that they are useless? I didn't want to do it, I would have given my right arm ( or at least H's right arm, I rather like mine) to have avoided today. I had to do it though, when your life is such that many choices are taken from you, when every day normal activities are a challenge, when joy and peace of mind are things that frighten you because you just don't know how to hold onto them, when memories just won't leave you alone, even when they are unwelcome and painful, well when this is your life, you can't allow people with no clue to poo poo it all and flick you away as though you are nothing more than flotsam.
I needed to have my say. I had to set the record straight even though I felt so tiny and so unimportant, so helpless and sure that against something so huge as the government, I stood very little chance. I had no choice but to clear state my case.
H said he was coming with me, so that I wasn't alone, he came with me because he knows that trying to find strange places makes me sick and panic. I was so pleased he was coming because that meant that (because the RAC route planner that I had checked 74 times told me my destination was 16.4 miles away) I would need to allow just an hour ( and 10 minutes because I told H my appointment was at 11, when it was 11.10 because an extra 10 minutes never hurts does it) to get lost, find myself and get there on time, if I had gone on my own I would have allowed 2 hours for that 16 miles trip.
We did get lost, which was in a painful way a good thing, Uh Oh....missed the turning ACK look am heading towards TAUNTON on the M5!! Wrong way Wrong way....what to do????? Itchy welts and more itchy welts and how splendid, look how terrible I look! Then HA! H is with me, is almost funny, can find my way back and get there and not be late but ouch itchy itchy.
We did get there and had 30 minutes to spare, I sat with H for a while and then he waited in the car and listened to his iPod, I never want him to come in with me, just to be nearby.
While I waited inside, the clerk explained to me that I would be seeing a lawyer and a doctor, completely independent of the benefits system, who would question me and allow me to do what I had come for and state my case. She said that they would listen to me, then they would make a decision straight away.
When it was my turn to go in I felt so much more ill than I had imagined I would, this suddenly mattered so much and after 6 months of this stretching on and on, of doctors appointments and letters, of form filling and phone calls, after all that time of being spoken to as though I am the lowest of the low, well I was overwhelmed by the fact that this was it, it was almost over.
I didn't have a plan, at all, I just wanted to explain what my life is like.
As soon as I sat behind that enormous and intimidating desk, opposite the handsome and distinguished looking lawyer and the female, efficient looking doctor I could feel that maybe I wasn't going to be as controlled and impressive as I had imagined.
They asked questions and I answered them, so far, so good. Then they began to ask probing questions, those ones that can't be answered with a yes or a no or a simple reply. They began to ask about how I feel, rather than what I am able to do. I tried so hard to answer and that blasted lump thing happened, when you open your mouth to say something and the lump sticks in your throat, the pain starts to squeeze and damn it if nothing but a squeak comes out, I did what I haven't done for a long time, since those painful days of therapy when I had to put my fingers onto my lips and squeeze, hard, to stop that pain getting out.
They let me get my act together and then they managed to guess what I couldn't say. The doctor asked me if speaking on the phone was hard for me, when I told her that it was if I knew the people, but strangers were OK, she nodded and the lawyer looked up and said " did I hear you say that speaking to people you know is MORE difficult? Why would that be?"
I explained that my every day is pretty much filled with making sure that no-one around me sees what they had just seen " I can't let my family or friends see that what you just saw, is how I feel inside, every day, all the time. If I let them see they feel that they have to help me, fix it, make it better and they can't, then they feel bad and I feel guilt on top of everything else. I have to act as though I am alright, they can see me lose my temper, they can watch me yell or do nothing but they can't see what you just saw, so I avoid talking to them, problem solved."
Now, this is where you all get to take a bow. They asked me why I don't sleep, what it was that keeps me awake until 3am and wakes me up at 6.30am. I explained that while everyone is awake, I am working at the keeping it together thing, I am holding it in, being what people need me to be ( although increasingly less effectively as time goes on) I said that I feel as though I am holding my breath until everyone goes to bed, if H stays up later than 10.30 I feel unreasonably angry because when everyone goes to bed, that's when I get to breathe.
I told them that what that other doctor wrote regarding the internet made me furious, he wrote 11 times " likes to surf the internet for 2 hours every evening" After I explained why I go on the internet he just wrote that.
"Do you like the internet?"
" I LOVE the internet"
"What do you do on the internet"
" I.WRITE.MY.BLOG" I actually said it like that, not yelling but I leaned forward and I looked them right in the face and I said it with such pride. The lawyer said "Ah!" as if he knew and the doctor said
"Does that help you?"
"It is absolutely the only thing that has saved my mind, it is the single thing that stops me giving in. It has saved my life"
"Hmmm, how so?"
"Well, I can be who I am , I can tell it like it is and people read it, they don't have to fix it or mend me, I don't feel I have dumped my pain on anyone that is going to be burdened by it. By being able to do that every evening I get the strength to get through the next day. "
"Is that a good time for you?"
"Is it your most favourite time?"
"Do you like being alone?"
"yes, I like my husband being nearby but I like it best when we don't talk, when nothing is expected of me."
They asked more questions and I cried some more, I stopped crying again and I answered everything honestly.
I was told to go outside and wait for a while and they would call me back in when they had made a decision. Which took 3 minutes, they looked at me and said
"Well, we have made a decision and have decided that we will allow your appeal, we are convinced that you meet the secretary of states guidelines set out to determine whether people are entitled to incapacity benefit, you do meet all the requirements, the original decision was wrong, you will be refunded all the benefits that have been withheld since august last year"
I went with the clerk and filled in a form or two, I saw, on the side copies of the decisions to other appeals seen that day....."appeal denied"....she gave me a copy of the decision and said that it would be couriered to the appropriate people that day, she said that I didn't have to do anything, they would make a payment for all the benefits withheld over the last 6+ months.
The money is great, the fact that we will have that money every week is going to make all the difference in the world, the back pay will be a sweet sweet thing, the greatest part of the day though was actually being listened to and believed, when they said that the original decision was wrong they gave me back my self respect which has been missing for 6 months ( and a bit ) I walked out of there with a weight off my shoulders.
The most incredible part is that when I checked dates, I saw that this whole skin thing...the welts and the swelling and the all began the day after I had the letter saying that my benefit was being stopped, we had just moved into the stinking hated house, I was miserable to be in a hovel with no idea how we would afford to pay to live there and then the letter to say we would have even less money. The next day began the physical misery, I put it all down the that house, when all along it was misery and fear combined, living in a horrible scary house and having to scrimp and save and scrape together to pay for the misery of doing so.
I wouldn't be a bit surprised if the skin clears up. Wouldn't that be amazing?
Today was a great day....... I reckon even Elvis would agree.

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Anonymous Anonymous said...

so happy for you Helen. So glad you guys were able to get the help you so need.

12:59 am  
Blogger LosingSanity said...

Hooray for a good day and so glad the tribunal went well. I bet your skin does clear up. It seems to be linked to stress, and having this benefit situation sorted out will probably be a great relief for you! So happy for you!

1:28 am  
Blogger Julie Julie Bo Boolie said...

Oh I do so hope that your skin clears up after this. Again.. THRILLED that they finally saw reason!

2:06 pm  

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