Stop the bus I want to get off.

Its a week since I was discharged from hospital and I am just fed up. It is getting harder and harder to bounce back from attacks and admissions. I used to pop back up after a day or so once home. Its been 7 days now. I feel slightly better than I did when I was discharged as long as I don’t do much. The effort of getting dressed in the morning leaves me gasping for breath and needing a nebuliser. I have 5 days to turn this around before I go back to work. Being back at work will be good for me as it is a distraction from how I feel and lets me concentrate on how others are feeling.

I am really apprehensive about going back to work. It is full of unknowns. I don’t know how people will be with me. No one at work had seen me in the acute phases of an attack or in A and E but this time they did see me. They saw me when I was out of it a bit. The saw me at my most vulnerable, when I was terrified that I wouldn’t be able to take the next breath due to sheer exhaustion and fatigue. Lying in a hospital bed in a gown attached to machines is not your best look and one you don’t want work people to see even if they are nurses and do this for a living.

I am racked with pain in my chest just now from all the coughing and effort from breathing. Living on pain killers is not what I want to do but just now it feels like my only option. If I don’t take pain killers I just lie on my sofa hoping I don’t cough so try not to move for the risk of moving mucus in my chest forcing a cough.

I know when I am not feeling great because TV doesn’t interest me, I can’t focus long enough to read. I drift into a sleep on and off all day. Im not one who sleeps much normally but my body just wants to sleep just now. The side effects from the high dose pred is hitting me hard- muscle aches, insomnia, hunger, thrush in my mouth, sores in my mouth and my skin is so dry.

Just now I am fed up. I just want to jump off this bus and get on a new one that won’t force me to fight each day to feel well and have a life that does not revolve around medication times and treatments. Putting a positive spin on it is really hard sometimes and just now its one of those times. Why does breathing have to be such hard work when for most it is an action that is done without even thinking about.

Taking small steps for the rest of this week. Planning something for each day so I get out and can feel like I have achieved something with the day rather that staying at home which would be the easier option.


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