Saturday, 28 January 2012

A Change Is Gonna Come

Had a terrible night's sleep last night, kept waking myself up coughing then lay awake going through all I'd been told at Harefield. I went there thinking that I wouldn't be too surprised or disappointed if they still wanted to keep me on the back burner for a while longer. Now I am very much bothered and pray that my antibody screen comes back OK. Now I very much want this transplant as soon as possible and know I would be devastated if I were refused.

I knew I was in trouble the moment I sat up this morning. I wasn't just blue I was almost black and I gasped for breathe. I immediately rang my GP to see if I could get an emergency appointment at their Saturday clinic only to find they no longer had a Saturday clinic and were referring all patients to the A & E department of the Lethal and Deadly. Having experienced a five hour wait there before and knowing I wasn't up to waiting that long, and I'd probably pick up another bug whilst there, I decided I'd just have to struggle along until my GP opened again on Monday. However by lunchtime I knew waiting was no longer possible and if I tried I'd end up in hospital, which I really didn't want to do. Fortunately a friend had told me about a drop in center she knew of. It sounded a better option than the A&E but I still had my doubts but I had to see somebody so off we went.

It was easy to find, I actually worked in the building when I first moved to Bedfordshire and it was a Job Centre so I knew exactly where it was, I also knew that parking was atrocious. Sure enough the town itself was chaotic as there appeared to be a football match on and the street where the drop in center was located was jam packed so Peter dropped me at the door and went off to find somewhere to leave the car. I staggered into reception with my oxygen tank slung over my arm and explained the situation. My heart sank when she said it was a two hour wait but then she said that because I had an ongoing condition and I was obviously ill she would speak to the doctor about fast tracking me. She disappeared for a minute and the next thing I knew I was being taken in to see the doctor. I must say I was very impressed with him, he knew what PH was and realised straight away that I was quite poorly. He examined me, asked a few questions and immediately described a different antibiotic at double strength and some steroids, I was so relieved that I'd got help without anyone panicking and trying to admit me to hospital. In future I will definitely use them again instead of suffering over a weekend or bank holiday.

So it is most definitely another few days off work, hopefully not many, and unless there is a spectacular recovery, I will miss out on going with Andrew to his interview at Herts Uni. I am really disappointed about that but Peter will be going with him so not all is lost as I expect I will get a full account when they return home.

Andrew has finally had the dates for his First Responder course. He decided to volunteer as a First Responder when he chose to do a paramedic course as it would give him an insight into what he was letting himself in for and he would pick up some very useful skills such a CPR and how to use a defibrillator. It will also stand him in good stead with the interview panel at Herts Uni as it shows how dedicated he is to being a paramedic that he's going to do it for free. Basically First Responders are trained volunteers who are sent out to emergencies to help until the ambulance can get there. They are used mostly in rural areas where it takes an ambulance over a certain amount of time to get to where they are needed or during busy periods where there are not enough ambulances to go around. They are trained in all the essential skills to enable them to treat heart attacks, stroke victims, cuts, bruises etc. They are given a uniform and a kit and cover a certain radius around where they live. The course is next weekend and I hope I'm well enough to go as it is in Cambridge and I rather fancy taking my camera with me, weather permitting.

In the news is a story about disabled people chaining themselves together in Oxford Circus and causing disruption to Oxford and Regent Streets in protest at the cuts to DLA. I have to say as a disabled person I really don't understand what they are getting so worked up about. From what I have read, those people truly deserving of DLA, or Personal Independence Payment as it will be called from 2013, will receive exactly the same amount of benefit, and in some cases more than they do now. OK so everyone is going to have a medical. If you have a condition that means you are disabled then you should have no worries, if you have been exaggerating you condition, or it has improved and you haven't let on, then you should lose part or all of your benefit. Only those who secretly know they are not entitled need be worried. Unfortunately scaremongering has been rife and now those in genuine need are terrified when I don't think they really need to be.

Personally I will be glad to see those getting DLA for being drug addicts or alcoholics taken out of the system, or at least have it refused until they agree to and stick with a recovery programme of some sort. Nor should it be given to those who are grossly obese. All these conditions, except on very rare instances, are self inflicted and could be cured with help and a bit of self control. It is an insult to those who are disabled through no fault of their own to be classified in the same way and the sooner it stops the better. DLA is not a bottomless pit. We've all read the stories of those claiming to have such bad backs that they cannot walk only to be filmed lifting boxes, running marathons or refereeing football games and we've all been justifiably outraged and wondered when the government will do something about it. Well now the government is doing something to curb that abuse and we are still not happy. I think we need to look at the proposals in detail and really understand what it means individually before jumping off the deep end. We can't expect those undeserving to be weeded out unless the deserving are investigated too and if we want a better system that is less open to fraud we are going to have to put up with a bit of unpleasantnesses.

We were supposed to be going to Laurence's for lunch tomorrow but I am too ill, so he has agreed to come to us for tea. Sometimes I really hate my body.