This is an update from my previous post. I’ve been in hospital two and a half weeks now and suffice to say I am going NUTS! Have had enough and feeling fed up. I feel so disconnected from the real world in here and I don’t like it. Let’s say the novelty has definitely worn off.
Living with Cystic Fibrosis and M.abscessus is no fun at all. The worst part though is having to go through this intense treatment without any guarantee of success. After a minimum of three weeks in hospital (possibly four), I won’t know whether the Mycobacterium Abscessus has been eradicated for at least 6 weeks.
This bacteria is slow growing and is apparently quite difficult to cultivate in laboratory settings. It’s a long arduous wait.
The first week was awful. I was constantly nauseous and lost my appetite. This has thankfully improved now that we have found a good routine with the anti-sickness drugs. One of the anti-sickness (Aprepitant)drugs is also used on chemo patients to help alleviate nauseau.
My eyesight has been affected and is a lot more blurry than usual. I am hoping this will return to normal once the intravenous drugs stop.
For such a tiny bacteria it sure has created massive havoc in my life. My daily routine and life as I know it, has come to a grinding halt. My relationship with my partner has been put under strain too . What’s worrying though is that there seem to be more questions than answers regarding M.Abscessus.
One online website states:
” We currently do not understand how individuals with cystic fibrosis acquire M. abscessus infection, how it can spread or how best to treat it. “
Not very reassuring.
So the best I can do for now is take life one day at a time. I try to focus on what is within my limits of influence and try not to worry about things that may not happen. Easier said than done, especially with so much time in hospital.
One of the hardest things to do is to stay mentally strong. My inner bully starts tormenting me and telling me I am useless in hospital and that I am weak. Our thoughts can help us cope with a situation or wreak havoc with our sense of self. I have good days and bad days. On the bad days, I have slept more than usual and the physiotherapists have had to work harder to get me to comply.
If I wasn’t so susceptible to bacteria I would love to visit patients in hospital to help revive their flagging spirits. If you can keep yourself upbeat, you have far more chance of a successful outcome. The mind and body are interlinked and they need to work together as a team. In hospital, mental health tends to be overlooked when treating patient’s physical illness.
If you happen to be in hospital too, hang in there. This will pass and you will be able to have fun again. Believe that everything happens for a reason.
Further info: Mycobacterium Abscessus and Cystic Fibrosis