Over all the years I have had my blog I tend to write freely, tell my story, sometimes it is a bit of a rant at things that have gone wrong or just being frustrated at my body not doing what it is meant to be doing or not doing what I want it to do! Its gets to me, more than made it should but sometimes we can’t help how we feel.
For anyone who knows me, you know I am a planner. I like to know what I am doing from one day to the next and will plan what I am doing. I just like to know whats happening, and having a body that doesn’t always allow for planning gets to me so much. The last 6-9 months I have been having a really weird time and not really knowing what I am doing and whether I am coming or going. It feels a lot of things are up in their air and I am not sure what I am doing.
I can normally manage things ok. With the help of a psychologist who I reluctantly started seeing years ago. I remember sitting in clinic getting upset because I was so frustrated by the never ending cycle of being on steroids, being off steroids and back on them. He suggested (kind of told me) he was going to get me to see the psychologist attached to the CF unit because my asthma was having such a big impact on all aspects of my life. At first I felt like he thought everything was in my head and I needed my head examined but I soon learnt that, that was not the case and she was actually really helpful and did exercises about pacing (something I am still rubbish at) and how to deal with being in hospitals, and also the recovery when your back home. It was really helpful and I have been lucky to have that support through with my new consultant (who I have had about 5 years now!) too. It doesn’t get away from all the stress of it all. I can implement the skills they have given me but it doesn’t stop me getting upset and finding stuff hard.
I can normally keep a hold of my emotions not too badly in front of friends etc. It tends to only be family who see me upset and very rarely does anyone else. But this last week it felt like everything came tumbling down. There was nothing really specific which set everything off. With winter approaching its a risky time of year as chest infections are rife and having had 2 already which thanks to prompt antibiotics I have got on top of them but it is a huge fear that there will be an infection or a trigger that will set my chest off and back to hospital I will need to go and everything that is involved in that.
For some reason everything hit me and felt like a massive weight that I just couldn’t lift. I would say it was scary to feel like I did but it wasn’t pleasant as I just couldn’t see the point of continuing to keep fighting for what? I work and I am so grateful for that but sometimes it feels like I can’t even do my work properly and thats all I am really doing now. I have given up playing sport, and put the focus in to work as I need to make sure I am well enough for it otherwise what is the point. Things that I have to give up frustrates me as Im not really winning the battle by doing that and at work it all got to me. I couldn’t hold it together and totally broke down. i just couldn’t help it and ended up taking some days off to have a break and get my head sorted.
Over the past 10 years I have been able to live a really independent life but recently it has been harder and have relied on more people. Everything also became more real when being awarded a disabled parking badge, bus pass and railcard as well as being awarded PIP for the maximum term given to. This sort of cements that my health is not what it was or should be, but it also sort of makes it official in a weird way. as before I would just get on with it and if I had to park further away as there was no parking I would just get on with it and maybe walk a bit slower so didnt get out of puff but now I can park closer when I need to. It is odd. I am so grateful for everything and hope that one day soon I won’t need these things and can go back to work full time (maybe- hopefully!) and even run another 1/2 marathon maybe.
I think now I feel better and I have had a lot of positive things to do recently such as the SPEAK Asthma group and helping set up a critical care PPI group at the Royal Infirmary in Edinburgh and I love ding all that sort of thing. In the near future I have a few things coming up too such as being interviewed by my brother for a news thing he is doing and then more SPEAK Asthma group meetings to. Being involved in Scotland Lacrosse has been great as well and with Home Internationals coming up in Edinburgh in the New Year how can I not be looking forward to the future.
Asthma is such a frustrating condition and so misunderstood. Its not from lack of trying to understand it and better control it. Sometimes we just need to curl up and hibernate and ride out the storm. New drugs are on the horizon which hopefully won’t bankrupt the NHS like some some drugs seem to be doing. Until then pacing and enjoying the opportunities I am given to the best of my ability.
After all- no one knows what could be round the corner.