Sorry Sorry Sorry!!

Sorry sorry sorry!!!  I know I haven’t been around for a while and to be honest I don’t have much of an excuse at all.  It’s just that in general I just haven’t felt up to it for one reason or another.  I have been feeling realty tired of late and not having much energy and least of all concentration.  There’s no real reason for this that I know of unless they find any thing to the contrary in my bloods when I go up to see Merlin tomorrow, it’s just how I seem to be every now and then.

Well not a lot has been happening for the last week or so.  My chest has been causing me some problems though.  The damp weather and the change in temperature from warm to cold really makes my chest very wheezy and therefore makes it pretty damn hard to breathe which you can imagine can cause a slight problem.  It is quite hard to not let it completely rule my life as in making me stay indoors all the time because you know when you go out you are going to probably suffer somewhat but as you all know b now I am a bit more stubborn than that.  I have tried things like wrapping a scarf around my face, you know like a Ninja Fighter, which although makes me look very menacing and frightens all the kids also makes breathing  very difficult which is not a good idea.  I’ve tried oxygen too which strangely makes no difference at all.  Maybe I ought to do as many a pensioner has done for years and jet off to spend the winter in Spain in the warm.  The only problem is that it will cost me a fortune in air fares coming back and fore to see the Wizard, maybe though thinking about it he could always cast some spell and get his but out there couldn’t he?

The GVHD of the skin is still pretty bad and shows no sign of burning itself out.  It is extremely tight and painful at times rendering me chair bound which I blinking hate.  I was only thinking the other day after being asked by someone to try and describe a normal day’s routine  if I don’t have any appointments or are not going out for any other reason then the only time I actually move from the chair is to go to the toilet say about 5 times a day taking about an hour or so and also 1 or 2 trips out to the kitchen to cook whatever which can I guess take up to about say 2 hours in all.  Therefore I am spending on average a shocking 21 hours sat on my bum in the chair.  That’s quite frightening when you look at it like that.  I do try to complete a lot of the exercises whilst sat in the chair which has helped somewhat and as I suffer at times from circulation problems in my feet which is no surprise sitting on my bum for so long these exercises seem to help to bring some blood back into my lower regions.  I’ve thankfully now also got a proper pressure relieving cushion to stop the old sores on the bum thank god although I find it very difficult to sleep whilst sat on it.  The physio is carrying on and still proving to be very helpful.  They come on a daily basis for an hour a day.  The routine is usually a good old natter first, well you have to have your priorities right, and then we get on with the job in hand which involves a series of leg exercises that can all be done whilst sat in a chair.  The purpose I guess is to stretch the skin a little as well as to strengthen the muscles.  They are very simple to do although saying that, they still cause me to be out of breath at times which always amuses me, when I’ve got my breath back that is!!!  Then if the weather is not too bad we try and go out for a little walk outside.  Whoever is with me walks behind with the wheelchair for me to sit when needed.  As I think I have said in a previous blog one of my goals to work on with the physio was to be able to walk to my car without being a physical wreck.  So each time we do manage to get out for a walk we head in that t direction and thankfully each time I have gone I have managed to walk just that little bit further so much so that I actually managed on Thursday to walk to the car.  Although I was out of breath I was still not that bad and even managed to get up and walk about the same distance again which is very promising indeed.  So all in all things are heading in the right direction as far as my fitness is concerned at least hopefully all the other things wrong with me will take note of this and try and follow suit!!

We’ve been looking also as you know about trying to get a stair lift the last few weeks too.  Well after thinking it through properly we have decided that maybe it might not be the ideal solution.  The thing is, that more often than not after a spell at Heath Towers I always come home weaker than before and even the short walk to the stair lift is out of the question.  Also the other main reason apart from being able to go to bed is being able to have a bath.  The problem with this is that I find it almost impossible when I am feeling well to get in and out of the bath on my own and need Judith to help lift me out. So even if I were to manage to get upstairs I wouldn’t be able to bathe.  The way the bathroom is arranged too I don’t think we would be able to have some sort of lifting device put in.

SO:

The idea at the moment is to look into having a single storey extension built at the back of the house comprising of a bedroom and a bathroom.  It will only take up about a third of the garden so we will still have somewhere to sit in the blazing hot summers that we have.  Planning shouldn’t be a problem as someone further down on the estate who is wheelchair bound has had one built some time ago thus setting precedence.  We should also be able to get a Disabled Facility Grant and as Judith is now out of work we might not even have to contribute towards it financially.  I think though even if we do have to pay something it will certainly be a lot less than the other alternative which will be to move to a bungalow in the area probably meaning Judith having to return to work leaving me back on my own with no help again as well as having to get another mortgage for around £40-£50k as the bungalows around here are about that much more than our house is worth.  We have started the ball rolling by applying for the assessment etc via the Social Worker although the way things work it will take a long time to go through.

Okay I had better be going as I need to get dressed as we are off out for lunch at a nearby pub which hasn’t been doing food for a while as sadly the Landlord who is the cook has had Cancer.  Thankfully all is well now and he has started to get back into it again.  The reports about the food served there have all been amazingly good and if the fact that we had to book 2 weeks in advance for Sunday lunch is anything to go by we will in for a treat.

See Ya!!