Emotions!!

Afternoon all.  I’m still not doing too good at the moment.  This infection doesn’t seem to getting better in a hurry.  It started to but after a few days my chest flared up again making breathing a lot harder.  It is a whole lot better than it was but really the I’ve been on these antibiotics for nearly 2 weeks now and they haven’t cleared it up so I think a change will be on the cards tomorrow when I venture off to see Merlin at Heath Towers.

It can be quite deceiving at times because when I am just sitting down vegging out in front of the TV or on the laptop surfing or whatever my breathing most of the times is quite normal and there is no need for oxygen at all.  It gives you like a false sense of security though because when I get up to say go to the toilet or out to the kitchen, by the time I get there I am quite often gasping for breath.  It usually settles after a short while when I sit down but in saying that I have noticed quite a bit at the moment that when I am sitting down out the kitchen preparing food etc I quite often struggle for breath for no reason.  I think some of it is down to the GVHD, where it has made my skin so tight especially my torso and when I sit down it is making the cavity my lungs need to expand much smaller therefore I wont be able to take in adequate oxygen.   When I sit in the living room it is with a poof under my legs so they are raised up and this seems to help make as much space for them to do their job.

I am finding it really hard at the moment to cope with this situation emotionally too.  Things like, because of the chest problems I can’t make it upstairs so I’m back to living and sleeping downstairs.  This creates a number of problems because the living room sort of turns into my bedroom and I often get the feeling that I am permanently living in bed.  Also because of the way things are at the moment when friends of Judith or Tara come to visit they are bypassed to the dining room or kitchen etc and more often than not I don’t even know they have come never mind left.  I get this feeling that I’m in the way or at the very least inconveniencing people.  This I must say is all in my head and no one would ever dream of thinking that of me but it just gets too much at times.  I really think that I am steadily going backwards and I have temporarily lost control which I don’t like at all.  I do tend to make things worse at times because I’m a stubborn bugger at the best of times but when I am this bad I tend to want to push myself that little bit harder just to sort of prove to myself that I am not worthless, such as what I was saying the other day about trying to make to the car and really struggling and it always ends in tears literally.  I’m so glad my hormones weren’t like this when I was growing up or I would have been a right mess.

All through this I have had these same thought and feelings etc and most of the times I find a way through whether its talking to Judith or Sarah or Chris or my mum and sister etc or quite often just writing on here and reading your wonderful comments or even by reading other peoples experiences such as Peters blog or Cass’s Cancer Giggles blog but this time I cant seem to get though it completely.  I am due to go and have chat with Sarah the councillor soon so maybe that will help a bit.

I’m back using hospital transport again now for a while until Judith finishes work because Tara has started back in college.  This is only really because I can’t make it to the car from the house.  For anyone who has ever experienced using this service you will know what I mean when I say I really REALLY am not looking forward to it at all.  My appointment with the Wizard is at 1pm although the Ambulance can turn up any time from around 10am ish to about 3pm, good job they are quite flexible at the day unit.  When and in fact if at times they turn up you never know where you will be going before you actually make it to Heath Towers.  It takes me around 35-50 mins to e there myself but I could take up to 2 hours with them as they will be picking up and dropping off all over the county.  I used to use this service quite a lot until was able to drive myself but ten because I didn’t need the wheelchair they used to send a taxi and that way more often than not I was taken straight to the hospital but this time I need to take my wheelchair so that I can try and make my own way to the Day Unit and not have to rely on the porters as that another annoying part of this whole experience.  It is not unknown for me to be up there for around 5 or 6 hours when I was seen and sorted at the Day Unit in about 1 hour just because waiting around for porters etc.  This is one thing I find really strange too.  After all I have been saying about my breathing being bad on exertion etc I seem to able to be able to push myself around in my wheelchair with no or very very little problem apart from people walking or worse still stopping in front of you and I don’t have any bumpers or air bags fitted to mine so it tends to hurt both of us.  I haven’t I admit tried to go for a huge distance although I could quite easily get around the supermarket for the weekly shop ect, maybe its because I think all the places I have done it have been quite flat so that makes it easier.  At least the hospital is flat so I shouldn’t have any worries there.

See what I mean about writing on here, I started off prior to and at the start of writing feeling quite tearful and as if I was going to burst into tears any moment, however I feel a little better and maybe even a bit more normal and useful.

Okay I’m off to try and do a bit of work on my web site that I’m building.  I’ve had the domain and hosting for about 2 months now and have done very little about it so wasting my money.  It will take me some time to do but it gives me something to try and focus on.

Right peeps thanks for listening and I do apologise for going on a bit today but the flood gates sort of swung open for a change and I couldn’t stop the flood.


See Ya!!