Nights can become very long when you either can’t sleep due to the high dose of prednisilone giving you insomnia or the nights when you reduce prednisilone and you hope desperately for a decent night sleep but instead you are up and down needing inhalers or nebulisers for relief and to try and combat the wheeze that not only makes it hard to breath but when trying to sleep and being wheezy it feels as though the low whistle is inside your head and it can drive you crazy!
Last night was one of those long nights. I don’t know how many times I rearranged my pillows, plumped them up to give me as much elevation as possible, or got up to sit on the couch for a nebuliser and some relief. The hours ticked by so slowly and the more I watched them the slower they went by.
The long hours leave you thinking about what is important in your life and what battles are worth the fight and what are just pulling you down and not worth the effort.
Working is very important to me. It gives me a purpose to my day. I love looking after my patients and trying to improve their quality of life but I find just now put effort into their lives is at a cost to my own. I have never seen myself as not working or giving up work but recently I have thoughts about stopping creeping in more and more. Everyday is becoming more of an effort. I have gone from working 12.5 hour shifts and night shifts, to core shifts on a ward, to community based job planning my day, to 7.5 hour days and now consider even dropping those hours down to work less.
When I first started working I would play golf after work and I would have a life but I was on a lot more medication and I was generally in better health. Slowly I was not doing as much on my off days and I had to stop working long shifts. With this reduction I could drop some medication but eventually this got to much and working on the ward was just too much and I moved to the community based job and to start with I was able t do more again and with that I could reduce medication but then again the same thing happened and I struggled to do anything out of work so I reduced my hours and it really helped. But once again after my asthma getting worse again I am finding it harder and harder to do the things I want to when I finish work.
Just now I am on more medication than I ever have been. The last time I was on this much medication was when I was about to move from Winchester back up to Edinburgh. I wonder if the fight is worth it. Am I just going to keep increasing medication. Where is the limit?
I have some great friends at work who really support me. I don’t want them to feel I can’t do my job but want to think that I can help them out when they need it and I can help them out when they need it. This works on the whole but when team work falls down it effects me so much more. Its because I am weak. I don’t rely on my colleagues but a stressful situation puts more stress on me as I am already working so hard just to keep even. This leaves me questioning is it really worth it. What benefit am I getting and am I letting people down by working when someone else could do my job better because they are physically healthy and don’t have stop for breath, or medication or avoid triggers.
I’m just not sure anymore if putting myself through so much stress is actually worth it. It is the hardest thing to motivate yourself when you are not gaining anything and not thriving in life. I am going through the process of researching what is out there to help me and perhaps see if there a different type of job which will not cause the physical and emotional stress. It is so hard to know what to do for the best. I need to take some time and evaluate my life weighing up what is important as just now everything is sacrificed and I just don’t want that.
I wonder if one day a cure will be found and I won’t have to think and plan my life to accommodate my asthma and really rubbish breathing. It scares me that perhaps life will not get better than this!