Saturday, 6 August 2011

Help Me If You Can, I'm Feeling Down

I decided to have a quiet day today, resting in preparation to returning to work tomorrow. I am feeling better but still have the occasional vomiting session. I had one again last night but thankfully it was over really quickly. I'm trying to work out why I am only having these bouts at night but still haven't managed to figure it out, maybe I'm eating something that disagrees with me or maybe it's because I've not eaten. Arrgghhh it is so frustrating and I wish it would just go away. On the plus side my chest has improved and my cough start this morning was almost non existent so I'm hoping things in this area have now settled back down.

There have been a couple of discussions on the PH forums recently that I'd like to share with a wider audience.

The first discussion centers around the depression and despair that accompanies a diagnoses of PH. A member has been going through a bad patch lately and admitted that on occasions he wishes he could just die. I defy anyone with a serious illness to say they have not felt like that at some point or other. Everyone with a terminal illness is entitled to feel down from time to time, it is part of the process of coming to terms and coping with the condition. And it is immensely difficult to be happy when you are in pain or things are going wrong. There have been many times over the last few months when I've gone to sleep and hoped not to wake up, I know that sounds awful and of course now I can't believe I'd got that low but it happens. It is so difficult to explain to those who are not suffering, no matter how sympathetic or close they are they can't possibly image how it feels to be so ill. Even the health professionals who know all the ins and outs of the illness and can predict the path and outcome will not know how it actually feels. And of course we, the suffers are partly to blame. We cover up how we feel, when asked how we are we always reply 'fine' and we do our crying in private. We go out of our way to hide our suffering from family and friends because we don't want to be an embarrassment, a burden but mostly because we don't want to see anyone upset on our behalf. However when we can no longer control our feelings and we do break down in public, that is when you find out who really cares. It is the nurse who puts her arm around you and allows you to blub down her uniform, the friend who does your shopping for you and returns with flowers and the relative who goes out and buys a box of tissues, a large bar of chocolate and then sits on the settee watching all your favourite soppy films with you, handing you the tissues one by one. So I would say to anyone in the depths of despair, don't play the hero, you are not expected to. Let someone know how you are feeling and let them help you, you will feel so much better for it.And remember for every low there is a high, karma.

The second story requires little comment from me, please just read it. Originally found in the Guardian but copied here from the PH website, thank guys.

... Larry Newman attended a work capability assessment in March 2010, when a degenerative lung condition made it impossible for him to go on working in the wood veneer showroom where he had spent much of his career. His weight had dropped from 10 to seven stone, and he had trouble breathing and walking.

The Atos staff member who carried out the medical test awarded him zero points. To qualify for employment and support allowance, the new sickness benefit, he needed to score 15 points, and in July he received a letter from jobcentre officials stating that he was not eligible for the benefit (worth around £95 a week) and would be fit to return to work within three months.

He was devastated by the decision, and dismayed to note a number of inaccuracies in the report that accompanied the letter. He decided to appeal against the decision, but before three months was up he died from his lung problems.

His widow, Sylvia Newman, recalls that one of the last things he said to her, as doctors put him on a ventilator, was: "It's a good job I'm fit for work." He was trying to make her laugh, she says, but it was also a reflection of how upset he had been by the conclusion of the medical test.

"He was so hurt by it. It made him so upset that they thought he was lying, and he wasn't," she says. "I think it added to him just giving up."

All I can say is I hope the civil servant responsible for that can live with themselves, sadly I think stories like that will soon become the norm, while the feckless and dishonest will continue to be given handouts. It's a mad, sad world we live in.

In other news, Laurence has had the survey on his house done and everything is fine. He is hiring a van next week and he and Peter are off to collect the furniture that my brother offered him from the house sale. It still feels unreal to me and I still can't believe he is leaving. Judging by what is happening in the financial markets he got his mortgage just in time because if things go the way they are predicting no one will be getting loans of any kind for sometime.

Andrew has now got two jobs, I was unaware that I had bred a little Alan Sugar. I am a bit worried that his studies will suffer but this second job is only a couple of hours one day a week delivering the local Sunday paper.

And so another week passes in the Roberts household, what will next week bring? I dread to think.