Too Far!!

Morning all.  I managed to get some physio in yesterday.  My chest as I have been saying was pretty wheezy and quite tight too so I wasn’t expecting miracles.  I was thinking along with the wheezyness and the fact that I hadn’t done any on the weekend as like almost everyone else in here, “they don’t work weekends”, that I  probably will fall back slightly.  Well we headed off for the race track (The corridor into the ward) where it is a bit quieter and less chance of interruptions although I recon it’s so nobody can see how hard these slave drivers push me and use their whips far too often.  On your marks, get set, GO!!  I was off at the usual snails pace puffing and panting away.  Well thinking back to Friday I seem to remember doing about 15 metres the first time before sitting down and to be honest I would have been happy with half of that this time.  Well I’m going like a steam train stopped at the station now about -000000009 mph.  Finally after about 5 metres I had to sit down quickly, panting like an I don’t know what? Jeez this was scary now as I had managed stupidly to cross what I call “The Line Of Control”.  What this is, is there is a certain point at which you are, although puffing and panting away in control of your breathing and able to recover fairly easily although it still takes time.  If, like I did you cross that line then you are in the realms of having no control over your breathing at all and as such you struggle to get in each breath, you start to panic which makes your breathing quicker and therefore worse.  It’s very much like having an asthma attack.  You start to think this is it, you are going to die because you can’t get in enough oxygen.  In fairness it is a very fine line indeed and I do usually have a good idea where it is but I think because of trying to make up for the lack on the weekend etc etc.  I did my usual trick and pushed too hard.  I think I scared the poor physio’s again too although I’m sure it wasn’t the first or last time they have seen this.  It took me some time with their words of encouragement as they could see I was in a bit of trouble to get my breathing back to normal a bit.  The problem was also made worse by the tightening of my airways due to the Bronchialitis so I don’t have as much lung to use as before.  Well I didn’t think it would make that much of a change but it did.  I really must learn to take things slow as I keep doing things like this to myself.  I just seem to have no patience in this sort of thing but I’m okay with every other thing like waiting around for people and stuff, it just doesn’t make sense.  Okay then, we decided to have another little walk but this time under strict instructions to not try and kill myself again.  I pushed a little although managed to get about 5 metres before slumping back in the chair puffing and panting.  This time I hadn’t pushed too hard and as a result the recovery time was a lot better.  We decided that it might be a good idea to stop there for the day and go back to my cell and have her do some cleverly aimed thumps on the back to try and release some of this muck that is rattling round in my lungs.  I don’t like the way she grins when she is doing it though as if she is getting far too much enjoyment out of it for my liking.  After a few minutes of this and some deep breathing exercises it was time to try and cough it up.  Well here goes, drum roll please,brrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!       Cough, cough, cough, and cough and……………..NOTHING!!!!  You can hear it rattling around it just doesn’t want to come out yet.  Hopefully it will appear later on which it sometimes does, if not try again tomorrow I suppose.  

Merlin flew in fresh from his hols.  At least he hasn’t forgotten his timing as per usual he comes right in the middle of Lunch and it looked nice too Roast Lamb.  He basically explained about having to stay in for the physio assessment etc and the changes in nebuliser’s and anti biotics that are probably causing the wheezyness so lets just wait and see for a few days.  I brought up the idea of the light treatment with him.  I think I explained my point fairly straight to the point and politely.  I said, “I WANT THAT BLOODY TREATMENT AND I WANT IT NOW”.  Subtle see?  I think I put across my point of view and certainly left him in no doubt as to what that was.  In a nutshell I just think that as the treatment is non evasive and doesn’t involve more drug therapy it can still be done alongside the present cyclosporine and steroids.  It is much like just replacing the PUVA which was only for the skin GVHD with this new treatment which again is only for the skin GVHD.  There seem to be some issues as to lack of conclusive evidence of its usefulness but there is a certain element of this with everything.  My feeling is this.  That any treatment they feel would help to put an end to these problems can either fail or succeed.  So if there is one that involves no drugs I would rather take a chance on that before one that involves drugs.  It makes sense I think.  

Well at least he knows how I feel now and has said that he will bring it up at the weekly Pow wow on Wednesday.  So watch this space I guess.

Okay then another long blog. I just don’t know where they are coming from at the moment.  Sorry!!!!!!

See Ya!!