I am well aware I have neglected my blog and there have been no posts for sometime. I have sat down so many times to try and write but just nothing comes out. If I am honest I have been struggling a lot over the past 4-5 months. I feel lost in myself and couldn’t find a way out. I have felt limited by so many things and often blamed my physical limitations for not being able to do things when actually it was my mental state that has stopped me. I am making an assumption here but I find when you have a chronic health condition which does mean you end up on a ventilator and ICU is just part of life, that people understand that getting other diagnosis’s is that big a deal. For example a few years ago while having an eye test they picked up a few issues which meant I was referred to ophthalmology and then neuro-opthalmology with a query brain tumour- this terrified me but I really didnt feel like there was the support and perhaps this was because I have dealt with worse. I might just be being sensitive but it is still a big deal.
I am the worst person to open up and speak to anyone about how I feel, I just don’t do it, I never have and probably never will, but there is one exception. A few friends who I have made through health advocacy know how tricky I have been finding things. I think it is easier to speak to them because they understand and empathise. Often if you speak to someone who has been an on looker in your life they will tell you its not that bad or it will get better which is them trying to help but actually what you want to hear which is what you get from some one who has a similar circumstance is- yes its shit but nothing can change it now, or they just listen and let you get what you need to off your chest and will suggest ways to help you manage and if that fails then just use dark humour.
When my asthma first got really bad I didn’t know how to cope with it so I just pretended it wasn’t there which meant dealing with when I had attacks and then I would pretend it wasn’t there again. This was not the way to do things but I didnt know better.
It has only been in the last 6 or 7 years I have really understood how to adapt my thinking when it comes to dealing with a chronic debilitating condition. It is not something I have been taught or read in a book I have just worked it out on my own (I wish there had been a course or book that told me how to manage life with chronic illness, life would have been so much easier) and recently I have forgotten this.
My approach to managing my life is trying to find a way to stay involved in what I enjoy even if it means that involvement is different. For example:
Asthma UK: I used to do a lot of fundraising for them through charity runs and sponsorship. I am not able to do that quite as much now so I volunteer in other ways such as raising awareness about asthma, or speak to researchers about the needs of people with asthma.
Or Lacrosse: I started back playing out field, but once my lungs really prevented me doing that I played in goal where there is not quite as much physical exertion, once this was too much I moved to management and coaching, finally when my health really took a nose dive I had to stop this (there were other reasons as well but it is a bit political and for another post).
These examples highlight how I was approaching my life with a chronic condition. It was similar in my role as a nurse too.
I guess recently I forgot all that. I focused on seeing everyones lives continue around me. Everyone moving on and I felt like I was stuck treading water with no where to go and no prospect of moving on. My health has not improved any in the last 10 years- if anything my body is struggling more but I need to adapt. I need to find what I can do again. I need to try things without fearing failure. Failure means I have tried and just need to investigate a new way of doing something.
Today I had a real positive moment and it has made me reflect back on the past 6 months. Until today I didnt realise I was so lost or stuck in myself. What triggered this…..
During lockdown I dug my golf clubs back out after 6 years of not playing and had a few rounds with my step dad. I struggled with playing and finding the right stance etc due to my leg being in an AFO and my ankle being stuck at 90 degrees (which is fine unless you live in Scotland). I investigated getting a new AFO with a hinge/spring in it to allow me to have some movement and play golf a little easier. December past I got the AFO and today I had a coaching assessment with a pro recommend to me by my last coach.
Coaching today made me realise I can get back to playing golf at a decent level even with my leg and asthma. We were able to try out different stances, set ups, swings to find the optimum position for me to get the best swing whilst retaining my balance. It was during this process when I realised that I had not been applying this to my life for the last wee while. I came away from that coaching session with far more than notes on my golf but a renewed sense of ability and focus.
I feel like I know what I need to address to make those changes in my life to get myself out of this rut and be able to enjoy my life rather than float by.
My aim for the next few months is to work on myself and my golf and hopefully be able to join my old club again and get a handicap back. Playing golf will give me a focus, (I have so many happy memories playing golf) Not just to get better at golf but it will add the social element back in which I have lost as well as getting outside more.
It is going to be hard to change my mindset and focus on being positive and challenging myself again but I am sure I will get there.