Feeling a little Strange...

It's been just under two weeks since I began using prednisolone. Over the last twelve days I have been aware of a difference in how I'm feeling. My attention span and concentration are somewhat reduced, and I often find myself swapping from one task to another. I've become a real busy body in the house doing anything I can. Part of this I think is down to my frustration of being on my one at home during the day. I've been feeling closed in at home, after having spent a month with my parents who were able to provide emotional and general support. Because of the effect the cold weather has on my lungs, I'm am reluctant to go for walks which I consider a basic important exercise. My breathing is further impared by the cold air and the winter climate with it's lack of sunlight doesn't make matters anymore appealing.

I'm at the stage where phyiscally I have taken several steps back, and I'm focusing not only on my leukaemia but on a physical rehabilitation. However, finding the motivation when you're on your own for most of the time is difficult. I'm not making any plans because I'm living each week at a time waiting for news from the doctors as to whether I can go back home to my parents, and that is also another source of my frustration.

I had been hoping to be able to return home and be around family after the last couple of weeks of appointments, but due to the commencement of steroids the doctors are reluctant to let my fly out and stay in the Gulf with my folks, as they think it is an unncessesary risk given the amount of medication I'm currently taking.

To add to my state of frustration, I'm am very aware of feeling 'spaced out' or 'stoned'. Sometimes it's just a heavy head, other times when listening to somebody talk it's almost like I'm in a trance and I'm listening to somebody incessantly nattering away. I'm having bizzare dreams, but atleast have gained a regular sleeping pattern.

Lung Physio

Last wednesday I saw my GP to try and get a referal to see a lung physio following advice from the lung consultant. On friday, the local services lung physio paid a me a visit. After I briefed her on my symptoms I was shown the 'Active Cycle of Breathing' technique. This set of breathing exercises is aim to help expel the phlegm that accumulates in the lung that the lung cannot get rid of as easily due to the effects resulting from the GVHD. The lungs' natural mechanism for getting rid of phelgm needs assistance with a set of breathing exercises performed lying on each side for about 10-15 mins two or three times per day. If there is phlegm left in the lungs, it can turn infections which is not good, so this is a preventative exercise.

Reduce the 'Roids

On Monday morning I saw the haematologist once again with the aim of reducing the initial loading dose of prednisolone from 100 mg/day to 60mg/day. I explained to him the stoned feeling I'm experiencing which, apparently, is fairly common when using the 'roids. I haven't yet developed the classic 'moon-face' but I do sense a small amount of puffiness around my jaw.

What I have noticed is that my flexiblity has definately improved, and I feel more supple, I am feel as though I have more energy, but my lung performances on the peak-flow meter are still the same as they've been for the last few weeks. The wet cough has turned back again to a dry tickling cough.

AWOL

I told the doctor of my frustration at home, but he was still reluctant to advise me to come out to see my parents, despite my insistance. He strongly advised against me traveling as there is currently a larger risk of something happening. I can understand the reasons, but healing is not just a medical process of taking drugs, it's the combination of medical attenetion, but equally as importantly of the mind, body and soul. This may sounds rather cliched, but it's pointless being treated when your frame of mind is not at its peak and focus toward the objectives of getting better. I decided even during the consultant that I shall take the risk and come out to visit my parents, as it feels to me the correct choice and return for my next appointment.