Monday, 30 May 2011

Dying Is Easy, It's Living That Scares Me To Death.

This is the kind of post that is going to have my 'fan club' in a frenzy. They will complain that I don't think of others and will scare people with my comments. Well before they start I'd just like to remind them that it is difficult to be positive ALL the time. Having PH is not a 'pick and choose' situation where you pick out the best bits and leave the bad bits brushed under a carpet. This is real, it is happening to me and if you don't like what is being written DON'T READ IT!

Everyday I wake up and say to myself only a few more days and I'll get the call/letter. Just a few more days. Today I've allowed myself to consider the other scenario. I've been keeping myself motivated by believing that I will get the treatment and it is just a matter of time. But what happens if the PCT turns me down? It could happen. I've been through so many medication changes this last six/seven months that they might just turn around and say no, no more. What then? Straight to transplant I suppose but that is such an unpredictable area. I might be lucky and get a donor within weeks though it is more likely to be months and there is always the reality that lots of transplant patients never get a donor. How would I cope with that? It is difficult enough knowing I'm going to have to be like I am for the next couple of weeks but what if this is it, this is how I'm going to be for the rest of my life? And how short will that life be? I'm not ashamed to say I have thought of death, who hasn't, and dying doesn't scare me though the idea of remaining this ill or worse terrifies me, what would be the point? Not many people know how they will die, some have a good idea, such as cancer patients and of course PH patients. We know because we feel the disease attacking us every day. They say those that know are better prepared. I beg to differ, I am not and do not want to be prepared, because even in my deepest despair there is still that little spark that will kick and scream until the end. And that and nothing else will keep me believing that I will get better. Pathetic isn't it how even when the odds are totally stacked against us we still believe we will win in the end.

I've started to have problems eating because I cannot breath and when I do eat there just doesn't seem to be enough room. I'm living on fruit juices, soup and cups of tea at the moment. I keep craving Subway tuna melts or sweet and sour chicken from my local Chinese, when I'm better I'm going to scoff like mad but until then all I can do is day dream. Yes I could order a take away in but it would just be a total waste of money as after two bites I'll be pushing it away feeling uncomfortably full.

Another problem I'm having is with the stairs, I just cannot do them anymore. Peter keeps offering to carry me but he's not as young as he was and I worry about his back. I let him when I'm really, really bad but I don't like it, I keep imagining both of us ending up in a heap at the bottom. Laurence isn't always available either so I tend to go up backwards on my backside, last night it took me half an hour to do the twelve steps to the bedroom. Peter kept coming out and saying 'let me carry you woman.' I kept shouting 'I'm going to bloody well do this on my own,' which of course didn't help the breathing situation. I got there in the end but was totally wiped out. I'm giving in tonight because I just cannot fight it anymore.

To get me out of the house Peter took me for a swift push around Tesco to buy some strawberries and cream so I can pick at them while watching TV tonight. While there we witnessed a heated argument following a car park prang, which was quite amusing. We didn't see the accident itself but it looked as thought either one car had reversed straight out of a space without looking or the other had tried to get around them while they were reversing out. In the end we had to reverse and go up another aisle as the argument looked as though it was going to turn into something of an epic. Peter parked and went into the store to borrow a wheelchair for me, and while he was gone an old bloke appeared by the car next to me and gave me the dirtiest look you've ever seen. I suspect he was just about to have a go at me about parking in a disabled space (and yes I was displaying my badge) when Peter returned with the chair and plonked me in it. This old bloke was also parked in a disabled bay, with a badge, but I couldn't see any reason why he should need a disabled badge and he was on his own so he wasn't parking there for the benefit of anyone else. Now for all I know he could have had a hidden illness just like me, it is not for me to judge. I assume that is someone has a badge then they must need it for something, so it really pisses me off that others think it is their devine right to question my entitlement.

It has rained constantly today which has added to my feeling of gloom. Although I am really pleased my garden is finally getting a good soaking I'm sure sitting out in the garden in warm sunshine would lift my mood considerably. Let's hope the sun returns soon and I can get back to being able to see the funny side.