Forgive me please!!

Well I’m out at last and I must apologise for not writing anything yesterday but to be honest I slept most of the day and when I wasn’t asleep I just didn’t have the patience.

So what’s been happening then?? Well, I must say it is nice to finally be home as I really thought at times that I was not going to be seeing this place again. As I’ve said earlier I really felt scared and helpless to do anything about it too this time which is not like me at all as everything usually just goes over my head. Although I did my usual trick of putting on a brave face and trying to be the usual happy go lucky jonny when all I really wanted was for someone to say to me “ No more bulls**t tell me how you really feel and what can I do to help”. I guess I will never change in that respect though so I’m my own worst enemy.

My chest seems to be getting a little better as in I can breathe a bit easier although I still get out of breath at the merest sign of exertion such as lifting a glass ha ha ha!!! No but seriously I always find it hard after a spell in Heath Towers to try and regain some strength back in this frail old body of mine. The main problem is that exercise which is needed to try and build up the muscles in my legs makes my heart rate rise which makes me out of breath and when I say out of breath I mean OUT OF BREATH!!!!! Like an old man after climbing 20 flights of stairs. So I have to take my time over exercising which obviously takes longer to have the desired effect. It’s really frustrating at times especially times like now when my mind and soul are active and I really want to get on and try and catch up to my life which has continued doing a runner whilst I’ve been in hospital but my blinking legs haven’t got enough power in them to do the job. Anyone got a spare set?????

My skin is extremely itchy again and I just can’t get any respite from it at all. It sort of starts in one small area, say on one thigh. I try for as long as possible to ignore it and resist the urge to scratch it but it seems to spread , then in grows in intensity till I just cant resist anymore and have a good scratch, but the bloody thing is like a army of ants and as soon as you start to scratch they up camp and move to another area like say my back or my arms or my head and the swine’s are so clever because I can never catch them because usually after a while they just totally vanish without a trace. But they lull you into a false sense of security as when you least expect it they come out of hiding and attack you yet again. I can’t wait for Tuesday when this PUVA should hopefully start although I will apparently have to wait a couple of weeks at least to see any results if there will be any. I must admit that I’m sort of thinking 50/50 whether it will work or not. Although I am trying to remain positive past experience ells me that there is a good chance it wont work. At least Merlin has a few more tricks up his sleeve.

Do you know one of the main things I miss when I come home from a spell at Heath Towers, apart from the delightful nurses and doctors of course is the Adjustable Beds. They are so comfortable especially if your anything like me and find it difficult to lie flat because of not only the skin tightness but the breathing problems mainly. I’ve tried all sorts of combinations of pillows and wedge shaped foam pillows and sausage shaped things etc etc but nothing comes anywhere near the practicality of these beds. I started to look around on the web yesterday for either a kingsize or two singles to make up a kingsize and the prices of them you would not believe. They are anything from around £1500 upwards. I knew they were quite expensive but £1500 I ask you that’s a blinking rip off. I should have known really as being involved with disability type jobs and stuff in the past you soon realise that anything to do with disability as in aids etc is always priced at huge inflated prices which seems to be aimed at the NHS paying for it as they seem to mainly just pay whatever is asked. I know there are certain grants available from various places as well as financial help from the likes of Macmillan and George Thomas etc but that will still not bring it down to an affordable amount sadly. I guess I will have to continue to find an alternative way of getting comfortable enough to be able to sleep. Maybe a Hammock might work you never know!!! Or a better idea may be that, next time I am in hospital get Judith to bring a couple of the drivers and one of the empty vans in and wearing balaclava’s kidnap me from the ward putting me and the bed in the back and after dumping the bed off at home drop me at the nearest A&E with a note attached explaining that I had been kidnapped and the kidnappers came to the conclusion that the bed is worth more than me therefore I was not worth hanging onto.

Right enough is enough I’m off.

See Ta!!