Do you ever get those days or even just evening in this case where you want to just give up the fight. Curl away and cry and forget about everything??
Tonight was one of those days/evenings. Work was grand but as the day wore on I began to feel sluggish and not particularly chesty but it was bothering me, I was constantly aware of it.
Driving home from work I just sort of had this fit of anger and hatred for everything about asthma. I had this conversation in my head of what I would want to say to my consultant/ respiratory nurses. It is totally irrational and I know they are trying their best but to me tonight I just wanted to scream at them to try harder. This is the list I had in my head of things I wanted to tell them….
1) Why do I bother taking the medication when It has been 10years. I am actually no better now than I was 10 yrs ago. Infact I’m worse. I can do less.
2) I want to move back down South because there they seemed more willing to try more varied treatments. Other than a brief spell for 9months in 2011/12 I was far more controlled when I was down South although on a lot more medication. Why did I have to get taken off it all up here.
3) I just want to give up being safe?? It’s no fun. I have stopped doing the stuff I love and I’m no better for it I’m not having less attacks.
4) Why do I have a asthma action plan when I’m told not to follow it.
5) I don’t want to be in control- I want to be told what to do and when to do it with regard to increasing and decreasing medication but want it to be thought out and not just based on peak flow as the action plan is because if I followed that as my consultant said I would be on 40mg pred all the time because of varied peak flow.
6) I want to go back on the pump- it got me off steroids. I wasn’t on them all the time.
7) I want to eat the food I want. Why can’t I be desensitised to aspirin??
These thoughts are totally irrational I know and I had a lot more of them but these are just some of the things which were going round in my head when I was having a moment tonight and I guess to sum it up I was feeling sorry for myself when I know I have it much better than a lot of people do so I can’t complain. It is just frustrating at times.
It was highlighted more tonight and I think may in the next few days because sleep has been a huge issue recently. I have never been the best of sleepers anyway but the past few nights have been worse than normal. I will be falling asleep on the couch and if I take myself off the bed I am wide awake again in a few hours and stay that way for the entire night or if I stay up I fall asleep on the couch and again wake up and spend the night awake. I seem unable to sleep more than a few hours a night and it is catching up on me. As many different things I try such as removing everything from my room that is electric, or has internet, keeping my room cool, open the window, new bedding, having a set routine before bed ultimately I know that this insomnia is all due to medication and an increase in steroids so no matter what I try I don’t think I will be able to beat the chemically induced side effects of the lovely prednisilone- my saviour and my devil.