Irrational Thinking
So, I had a clinic appointment yesterday and got the best report I've had for a long time. I have managed to put on about 4kg since my admission in January, so am now about the heaviest I have ever been. I am on medication to help me gain weight, so am able to reduce the strength of this now, with a view to stopping it should I continue with this trend. My lung function was also up, which may be related to the weight gain, or just reflecting this period of stability. My oxygen levels were a little low, but they said as long as I wasn't symptomatic, I don't have to use the oxygen during the day if I don't feel I need it. So, overall an excellent report.
You would think I would be jumping for joy, but instead I reverted into anxious, panicky mode and declared that perhaps I didn't in fact need a transplant any more. I suggested that Newcastle may consider me too well if I continued to be stable, and would remove me from the list. This is nothing more than a figment of my imagination, but something that continues to haunt me whenever I have a period of stability. I think it largely stems from the difficulty I have always had in believing I am ill enough to require transplant, and my continual need to analyse the decision to be listed, based on however I currently feel. Don't get me wrong, it is not that I don't want to be called, because I desperately do. My life has changed beyond recognition in the past 2 years and I wholeheartedly want to be given that second chance to start living again. It's just that I always feel there is someone else who needs it more, someone else more deserving. Yet I also know that if I were to become that person who needs it most, then I have also started to move out of that window in which transplantation is most successful. You need to be strong to get a transplant, you need to be a good weight and you need to be as stable as possible; so technically now is the perfect time for me to be called.
My doctor managed to take my slightly hysterical comments seriously, and reassured me that yes, I definitely did need a transplant and that my decline in health over the past two years has confirmed this. He also told me that after my review with the Newcastle team in November, the consultant stated in his letter that I urgently needed a transplant. I guess maybe he knows more about it than I do...
I'm sure most of what I am saying will make little sense to people but I thought I would share it anyway. This road towards transplant is a difficult one; its not only about the physical health because the emotional journey is probably even more turbulent. Although I have a wonderful support network, it can still feel very lonely at times, especially when you have a tendency to think too much, and plenty time in which to do it.
So I guess the moral of that story is that I need to think less and do more...
Wednesday, February 27, 2008
Thursday, February 21, 2008
Friday, February 15, 2008
Dog walking and Rug buying...
Did someone say 'walk' ?!
I am still feeling ok, and am due my port flush next week, which means I have been off IV's for nearly a month :-) We have had some brighter weather recently, which has spurred me on to take Seb out for a little walk on a few occasions. I can only manage about 10 minutes, and its hard going, but I feel at least I am getting some exercise and Seb is certainly enjoying himself. Before this, I probably last took him out in October, so you can imagine the surprised look on his face when I shouted 'walkies'. He looked confused for a second, then literally threw himself at me in a most exuberant manner. As we went out the door he kept looking back over his shoulder to make sure I really was coming with him.... at least I felt my efforts were being appreciated. I should really use my oxygen to exercise as my oxygen saturations tend to fall when I am walking, but the cylinders are really too heavy to carry so it simply negates any benefit. However I will hopefully be getting to trial liquid oxygen in the near future, which is much lighter and more compact to carry. Maybe this will even help me walk a little further, which would be good news all round.
I am still amusing myself with a little studying and was pleased to have passed by 2nd assignment. I have already completed the third one and after that there is only one more to do. The course hasn't taken as long as I thought it would, but it has been a good introduction to studying and getting my brain more active again. Hopefully I will manage to keep up the efforts once the novelty has worn off!
I am also keeping busy by helping out my friend Emily with a project she is doing. We are looking at the issue of CF and relationships and are hoping to produce a booklet on the topic, as there is a distinct lack of literature in this area. Emily has been working hard getting lots of input from people with CF and their partners, and we are now starting to collate this. The idea is to put together peoples experiences on various topics, so that essentially the booklet will be a collaborative effort by people with CF, for people with CF. That's the idea anyway, although I'm sure things will evolve as we start to put it all together.
Other than that, life has been pretty quiet. Andrew has been busy painting the windows in the living room and replacing skirting boards, while I have contributed by doing some online rug shopping. I'm just waiting for it to arrive now, and hoping it looks remotely like it did in the picture....
Did someone say 'walk' ?!
I am still feeling ok, and am due my port flush next week, which means I have been off IV's for nearly a month :-) We have had some brighter weather recently, which has spurred me on to take Seb out for a little walk on a few occasions. I can only manage about 10 minutes, and its hard going, but I feel at least I am getting some exercise and Seb is certainly enjoying himself. Before this, I probably last took him out in October, so you can imagine the surprised look on his face when I shouted 'walkies'. He looked confused for a second, then literally threw himself at me in a most exuberant manner. As we went out the door he kept looking back over his shoulder to make sure I really was coming with him.... at least I felt my efforts were being appreciated. I should really use my oxygen to exercise as my oxygen saturations tend to fall when I am walking, but the cylinders are really too heavy to carry so it simply negates any benefit. However I will hopefully be getting to trial liquid oxygen in the near future, which is much lighter and more compact to carry. Maybe this will even help me walk a little further, which would be good news all round.
I am still amusing myself with a little studying and was pleased to have passed by 2nd assignment. I have already completed the third one and after that there is only one more to do. The course hasn't taken as long as I thought it would, but it has been a good introduction to studying and getting my brain more active again. Hopefully I will manage to keep up the efforts once the novelty has worn off!
I am also keeping busy by helping out my friend Emily with a project she is doing. We are looking at the issue of CF and relationships and are hoping to produce a booklet on the topic, as there is a distinct lack of literature in this area. Emily has been working hard getting lots of input from people with CF and their partners, and we are now starting to collate this. The idea is to put together peoples experiences on various topics, so that essentially the booklet will be a collaborative effort by people with CF, for people with CF. That's the idea anyway, although I'm sure things will evolve as we start to put it all together.
Other than that, life has been pretty quiet. Andrew has been busy painting the windows in the living room and replacing skirting boards, while I have contributed by doing some online rug shopping. I'm just waiting for it to arrive now, and hoping it looks remotely like it did in the picture....
Tuesday, February 05, 2008
Keeping busy
That's a couple of weeks since I finished my IVs and I am still feeling pretty good, so, long may it continue. I've not been needing my oxygen during the day at the moment, which makes moving about the house so much easier - no tugging the tubing behind me and getting it caught under doors. Plus, Seb has a tendency to sit on the tubing whenever possible, and refuses to move despite me tugging at it vigorously. Since I have been feeling a bit better, I have also managed to get out a bit more. This has resulted in the purchase of 2 new leather sofas. My life is so much more expensive when I am well - I dread to think what will happen after my transplant. Today was spent getting several new cushions for the new sofas, and I really do think the rug needs replacing...
Other than spending Andrews hard earned cash, I have been busying myself with some study. I got my first assignment back, and thankfully had passed. You don't get a grade, but I did get some very good comments which made the hard work (almost) seem worthwhile. I have now sent off my 2nd assignment, so fingers crossed for a similar response. Since I am now in study mode, I am also trying to do some background reading in Psychiatry, so that I am not altogether rusty by the time I go back to work. I am concerned that this sudden rush of intellectual stimulation may prove too much, and will therefore punctuate my learning with some daytime TV. I think its the only safe option.
I have also been doing some painting and have just finished some canvases of snowdrops, that my friend asked me to do. My next plan is something for the living room......you know, to go with the new sofas, and cushions...and rug. I would maintain that by painting something myself, I will overall be saving Andrew money.
So, I can say that life is not too bad just now, and I am at least able to keep myself amused. The odd thing however, is that during these periods of feeling more well, I actually become more anxious about the transplant. When I am unwell, I want to be called immediately and am filled with dread that the call will not come soon enough. When I start to recover, I almost forget how unwell I have been, and start to feel overwhelmed by the very idea of being called for transplant. Its only at these times that the enormity of what I am facing hits me. This anxiety leaks out in the most bizzare ways - for example, I can become all consumed by the fact the study bookshelves needs tidied or because I'm struggling to answer a question in my assignment, or because I start to think about going back to work post transplant and can't imagine ever being strong enough to face that. I worry about the most pointless things, and then I get annoyed at myself for wasting such precious time on trivial concerns. I know that underlying the trivial worries, are much greater ones, that I would rather not dwell on and that there is little benefit in exploring. It's so much safer to worry about whether these cushions really match the curtains.
I think what I need to do is learn to enjoy these times when I am feeling better and to simply believe that the call will come at the right time for me, and when it does, that I will be strong enough to face that challenge and embrace the opportunities that lie ahead.
That's a couple of weeks since I finished my IVs and I am still feeling pretty good, so, long may it continue. I've not been needing my oxygen during the day at the moment, which makes moving about the house so much easier - no tugging the tubing behind me and getting it caught under doors. Plus, Seb has a tendency to sit on the tubing whenever possible, and refuses to move despite me tugging at it vigorously. Since I have been feeling a bit better, I have also managed to get out a bit more. This has resulted in the purchase of 2 new leather sofas. My life is so much more expensive when I am well - I dread to think what will happen after my transplant. Today was spent getting several new cushions for the new sofas, and I really do think the rug needs replacing...
Other than spending Andrews hard earned cash, I have been busying myself with some study. I got my first assignment back, and thankfully had passed. You don't get a grade, but I did get some very good comments which made the hard work (almost) seem worthwhile. I have now sent off my 2nd assignment, so fingers crossed for a similar response. Since I am now in study mode, I am also trying to do some background reading in Psychiatry, so that I am not altogether rusty by the time I go back to work. I am concerned that this sudden rush of intellectual stimulation may prove too much, and will therefore punctuate my learning with some daytime TV. I think its the only safe option.
I have also been doing some painting and have just finished some canvases of snowdrops, that my friend asked me to do. My next plan is something for the living room......you know, to go with the new sofas, and cushions...and rug. I would maintain that by painting something myself, I will overall be saving Andrew money.
So, I can say that life is not too bad just now, and I am at least able to keep myself amused. The odd thing however, is that during these periods of feeling more well, I actually become more anxious about the transplant. When I am unwell, I want to be called immediately and am filled with dread that the call will not come soon enough. When I start to recover, I almost forget how unwell I have been, and start to feel overwhelmed by the very idea of being called for transplant. Its only at these times that the enormity of what I am facing hits me. This anxiety leaks out in the most bizzare ways - for example, I can become all consumed by the fact the study bookshelves needs tidied or because I'm struggling to answer a question in my assignment, or because I start to think about going back to work post transplant and can't imagine ever being strong enough to face that. I worry about the most pointless things, and then I get annoyed at myself for wasting such precious time on trivial concerns. I know that underlying the trivial worries, are much greater ones, that I would rather not dwell on and that there is little benefit in exploring. It's so much safer to worry about whether these cushions really match the curtains.
I think what I need to do is learn to enjoy these times when I am feeling better and to simply believe that the call will come at the right time for me, and when it does, that I will be strong enough to face that challenge and embrace the opportunities that lie ahead.
Subscribe to:
Posts (Atom)
Posts
