What do you do when you can’t do what you want to do and how do you find things to do that you want to do and can do? This is an issue I have encountered a few times but have found the balance I think.
With not working so much I have more down time now. Over the years of having extended periods of time where I have not been able to do things I have been at the two extremes. I have gone from the extreme feeling of not being able to do stuff is not going to stop me so I am going to do what I want to anyway and would think sod the results. I found that as I wasn’t doing as much, such as University I had even more down time and ended up actually trying and attempting to do more things than I would have had I been living what I considered a “normal” life.
But with that extreme there is the other end which I have also had. I went through a phase where I sort of thought what was the point in attempting to do anything because it would make me ill and set my breathing off, and I couldn’t do what I wanted to do how I wanted to do it. Writing it here makes me sound a bit like a petulant child not doing something because I can’t do it my way, but I don’t mean to be. I think it is so hard because brittle asthma is one of these annoying diseases that when you don’t do anything you feel not to bad but then you go to do a hobby or activity and you can’t because your airways are so tight and constrict. It is frustrating especially when you were a very active person. Going through this sort of feeling made me feel very depressed which just adds another thing into the mixing bowl to make you feel worse because depression just makes you feel like not bothering, so you isolate yourself more to stop you being confronted with activities and hobbies you can’t do. Admitting this is ok. You are not weak to say that a condition effects your mental health. Living with any long term condition can effect your mental health. You live on a knife edge with not knowing what you are going to have or feel the next day or hours.
I remember a conversation I had with my Mum when she was asking if I had any interests outside of sport because she was concerned that I had a bit of an all or nothing attitude. At this point I wasn’t involved in any of the research things, coaching, lacrosse stick stringing and dying, assistant manager in lacrosse so was only focused on running the 1/2 Marathon, playing lacrosse and playing golf which my rational brain knew I couldn’t keep up with but the impulsive side of my brain really doesn’t care what my body thinks but I love sport so Im going to do it. I guess though you learn by your mistakes and although I spent many years persisting to play sport and eventually running the Edinburgh 1/2 Marathon I started to accept that my body was at its limit but wasn’t quite ready to give up on sport just yet. I had very little interest in much outside of sport. I think Mum suggested cooking classes or yoga to which I sort of laughed as a daft idea and not something I wanted to do. I had done yoga once and found it boring and despite my sporting background it highlighted how utterly inflexible I am and how I am not good at relaxing or focusing on my inner karma.
But having said that, 4 years on and only really in the last 6-9 months I have become content with not playing sport. I am not sure if it is because there is so much more at stake now if I continued to play sport. When I say so much at stake I don’t mean losing my job but the potential for losing my life from an asthma attack. I am all to aware that there are only so many times you can come out of intensive care walking and talking. It sounds extreme but its true. It has happened to friends and I don’t want it to happen to me. I have had attacks recently which have sent me to ITU and I wasn’t doing anything like playing sport.
I have been fortunate that I have had opportunities come to me which have meant I am not sitting at home thinking about what I can’t do and what I used to do. I do have the days where I do think that but because of other activities now I am able to distract myself away from the can’t and focus on the can and able. I often find myself now with a much wider variety of activities which I enjoy and participate in than I ever did when I was only focused on sport.
I think what I am trying to say is that if you find you are experiencing time when you can’t do what you would like to do, or you have been forced to change your direction then other things will come by and grab them. There will always be down times in life. No one wether the have a long term condition or not can end up in situations which cause crisis and result in depression but it is acknowledging how you feel and responding to that in the right way.
There are many days when I really can’t be bothered to do anything as just don’t see the point but these times are more short lived as there is always an email to read, a lay summary to review, a course to teach, a teleconference to prep for or take part in. I have so much to do now and it is a wide range of things. Some I can even do when in hospital and in that horrible stage of being fine sitting on my bed but getting up to go to the bathroom results in multiple back to back nebs, but having things I can do as distraction is a life saver.
I am amazed at the variety and number of things I now do: one of the PPI Leads at AUKCAR, author, assistant manager for Scotland Lacrosse Women’s Team, Member of RaP at AUK, part of the PAG at AUKMRC, Astra Zeneca Patient Centricity member, speaker for PPI course with Edinburgh CRF, speaker for PPI Module in Clinical Trials Masters at Edinburgh University, custom lacrosse stick stringer and dyer, PAG member for ELF, blogger, volunteer, and anything else that may come my way. I am so thankful for the opportunities I have been given as they really have turned things around when I had to give up playing sport. I am not sure what I would have done had I not had things to fill my time! Probably still intent on attempting to play sport and not doing my body any good at all!!!