Feeling tired is really nothing new in my world but I feel very drained at the moment. I am hoping a good rest this weekend will see me right and ready to take on next week. When my transplant journey began, I would regularly access transplant related forums to network with other people globally who were sharing a similar experience. Since the pieces of my then shattered life has started to rebuild, I find that I access these forums less and less. I would say this is due to my efforts to actively avoid the 'patient' 'illness' label and to become part of the wider community again. For me, this is a good thing and a sign that I do genuinely feel better about things since my conditions are fairly stable now. However, I do realise that the reason I felt empowered and informed back then was because someone in my position, who had come out the other end of the transplant journey, had given up their time to be a resource/help tool to others including myself. To offer advice, share their story, befriend and console.
Now that I am one of these people. It seems only right for me to reciprocate and be an accessible resource to others. I know that one of the reasons that I am coming through the transplant jouney emotionally is because of the great friendships I have acquired, many as a result of meeting on online forums!!
One of the problems was that I had joined so many that I could not actively keep up with each of them and felt overwhelmed with responses and monitoring. Being on facebook yesterday I noticed details of a forum community that I have not heard of. I have browsed their site and it seems pretty good as you can create a profile detailed the cause, what transplanted organs you have and current symptomology. This way the system can link you specifically to those the share the most similar experience if one wishes. I may join this one or decide to wave a big hello on one of the other sites I am already a member of!? Umm...
I have a review at my transplant centre in just over a week and I am hoping I pass my MOT with flying colours literally. I am really keen on flying long haul and I am hoping that the docs have no objections. I feel well enough generally and so I am hoping it will be fine. I must admit I am a bit worried about putting so much strain and pressure on my lungs for such an extended period. Post lung transplant I think long haul flying is fine provided your recent lung function is tiptop but in my case as many of you know, my lung function is very low and so I will need oxygen for the duration of the flight (when at altitude). One of the many things I hoped to resume when waiting for a suitable organ match and coming through the transplant operation was that I could travel once more. Working in travel for over 10 years has cemented my passion for travel and it will never leave me. I would rather cancel magazine subscriptions, turn down pub lunches and cut down my mobile phone bill so that I can save up for holiday!! :-)
Throbbing, hard hitting headaches have really restricted what I can do the past week or so. I am hoping its stress related and will ease as time goes on. I have to find some coping strategies and maybe some more relaxation methods. I do find that even on my off days, I need to have a short stroll outside to clear my head and exercise my weary muscles.
I am off to raid the fridge for a nice fruit salad for breakfast!! :-)