Breathing is not proving fun at the moment. I have asthma, and April was always a tricky time of year for me breathing-wise due to fog and April showers, but there’s a bit more than asthma going on. The outcome is I’m really struggling to sleep, which if you’ve read my previous posts, you’ll know I don’t sleep much anyway! I can’t lie down to sleep, so have to sleep sitting up to help with the pain I have in my chest and wheezing. I have a type of asthma where I don’t normally wheeze in an attack, so wheezing is a bit unusual.
If it looks like a duck and quacks like a duck, it’s a duck, right? No, that would be straight forward. It looks and sounds like asthma, and some of it is, but it’s actually my endocrine system playing up. This seems to be one of my quirks and actually made it take a bit longer to get a diagnosis of Adrenal Insufficiency. I was having lots of ‘asthma attacks’ but without any obvious trigger. The last time an ambulance was called for me having an asthma attack, my o2 sats were in the 80s and I was wheezing, but I was still talking in full sentences, didn’t feel ‘that bad’ (I’d felt worse) and was sitting up joking with the paramedic. Which completely baffled her because she gave me lots of rounds of nebulisers and nothing was bringing my sats back up, until she gave me a hydrocortisone neb, which worked within minutes.
Two and a bit weeks on the regional respiratory specialist ward with some very clever doctors and they were also confused. I had asthma, but things weren’t adding up still. Then I got diagnosed with adrenal insufficiency. Once I got to grips with my new diagnosis, I started noticing that when I ended up in a&e wheezing with falling o2, nebs didn’t make much difference, but treating the adrenal Insufficiency instead did. But, as you can imagine, it makes me sound a bit bonkers refusing nebulisers and asking for other drugs instead…!
The other bizarre thing that happens is that I have this ‘I need to eat’ feeling a little while before the wheezing starts. If I ignore it, I get wheezy, if I eat, I can sometimes stop it from starting. Which doesn’t make a lot of sense either! And also made me sound crazy to the very clever doctors on the respiratory ward!
So I still don’t know why I get wheezy and my sats drop and how it interlinks with my endocrine system/needing to eat, but it does somehow. Having spoken to some other AI patients, a few also had breathing issues prior to diagnosis as well, but it’s not a common symptom. I can manage in the day most of the time, but at night it’s difficult because it’s blatantly obvious that it’s hard to breathe and there’s nothing to distract myself with- lots of relaxation things focus on breathing, which doesn’t help. It’s also not very pleasant, not being able to breathe properly. That’s partially why I’ve been writing film and tv review blogs at night because it preoccupies part of my mind and encourages my body to get into good breathing cycles subconsciously as much as I can to help with sleep. It’ll pass, I’m sure, it’s just a case of dealing with the breathing things as they come up. If anyone else has a similar experience or advice, I’d be interested in hearing about it! 🙂