Just wanting to share my thoughts with people who might understand, although I realise my problems are nothing compared to many here and I’m probably just making a fuss about nothing. Apologies for the long post.
For background info, I’m 46 and have had asthma since a toddler. Started having more problems a few years ago (no major asthma attack, just more symptomatic on a daily basis and developed a permanent productive cough) and was put on high strength combination inhaler (now relvar ellipta) and Montelukast. Last year started getting frequent bacterial chest infections (haemaphillus, moraxella and strep pneumoniae). Had a CT scan in July which showed mild mucus plugging and was told it was not enough to diagnose bronchiectasis but was consistent with small airways disease (spirometry showed good peak flow and volume but also showed that there was some obstruction in the small airways) and the way to treat this was better control of the asthma. So prescribed spiruva respimat and carbocysteine as well as the above. After a bout of strep pneumoniae in December I had a 6 month reprieve and thought maybe last year was a blip, but then I got another bout of strep pneumoniae in July.
I’ve just had my worse bout yet of strep pneumoniae (could barely get out of bed for a few days, chills and aches, intense headache and vomiting at one point, O2 levels fine but pulse rate was high and peak flow dropped quite a bit). Luckily the doctors here give me antibiotics now (and this time steroids too) as soon as I go in with my little pot of green gunk and don’t make me wait anymore for the results to come back. Been off the antibiotics for a week and a half and infection is gone, but I’m still totally wiped out and it’s quite a struggle to do the bare minimum to look after my family (I have two daughters and a husband who is disabled with arthritis, fibromyalgia, depression and ptsd). Worse than the physical fatigue is feeling so slow mentally (like my thoughts are having to go through treacle). Went back to the dr this week and he said my chest was fine and that it was just post pneumonia fatigue.
The thing is when I started with all the infections last year I was nearing the end of my second year of a full time degree and ended up spending the summer doing some of the essays in the resit period. As I was still having problems (and my husband also had a mental health crisis) I suspended my studies for a year because I just couldn’t see how I was going to manage. Because of the break from infections I thought this year would be OK (maybe last year was just a blip) so I started back at Uni in September. But now everything is going pear shaped again and might have to suspend my studies again because I’ve already had Mitigating circumstance applied to 3 assignments, I’m behind on the reading/lectures and have 4 other assignments due in the next 5 weeks and don’t feel in a fit state to do any of it at the moment. Trouble is will next academic year be any better with regards to my health. I wanted to get a degree so I could get a better full time job and give my family a better standard of living (my husband can’t work due to his disabilities). But at the moment if I keep getting these infections I worry about whether I’ll be able to hold down a job anyway (nobody is going to want to employ someone who keeps having time off for chest infection several times a year. Also I live on a small island and pretty much the only full time work is in town (on another island) which involves a ferry crossing and a long day and I wonder if trying to do this (as well as looking after the family) will end up with getting myself run down and making infections more likely (trying to move but I need a council transfer and no luck so far). The only work really available on the island is a social care worker, which I did before I started my degree. I was fitter then but still found it physically demanding due to the shift system (doing home care I’d start at 7.30, be out for a couple of hours or so, come home, go out again for a couple of hours at either lunchtime or teatime and then again for bedtime visits, finishing at 10pm).
So basically I’m fed up because I’m worn out at the moment, fed up because I’m stressing about what to do about my degree, fed up because I’ve lost confidence in my health and fed up because I feel uncertain about the future and feel kind of powerless to influence my future and that of my family (because everything depends on my lungs). My asthma never limited me in the past and I’m struggling to come to the acceptance that it is now (not because I have bad attacks but because of the infections which seem to me ages to get over and to be honest I don’t think my stamina fully recovered from the ones last year even in the 6 months when I had a break earlier this year).
Thanks for listening
Apologies for the rant.