It’s just not working

I’ve always distantly appreciated The Verve. As a band, they’ve got some pretty powerful songs that have a nice familiarity to them whenever I hear them. I particularly like ‘Bitter Sweet Symphony’ on long car journeys through dramatic scenery, makes me feel all invincible. Anyway, one of their other hits ‘Drugs Don’t Work’ has been the soundtrack to the last few months for me. The line “drugs don’t work, they’re just making it worse” is ringing true in my mind.

It turns out that blasting really salty vapour down my throat for the last six months hasn’t been doing me any good. I’m a rule follower and hate being ill so I was religiously taking my 7% PARI-PEP (Positive Expiratory Pressure) nebuliser as prescribed by my doctor. This continued on a daily basis and yeah, it was quite gross. I had in my head “No pain, no gain!’ so kept telling myself to grin and bear it to keep my airway in top shape. I guess I likened it to some obscure beauty treatment that would be worth it in the end?!

I’m not sure if it was that, anxiety or just blind ignorance that prompted me to continue taking my medication daily without question but I didn’t really have anything to compare it to. It wasn’t until August that I allowed myself to notice something wasn’t quite right. I’d started coughing like a seal quite a lot and my breathlessness was getting worse despite not actually feeling ‘unwell.’ My nebuliser was getting really quite difficult to take, leaving me coughing and breathless for hours each night. I felt quite lost having pinned so much hope on the medication sorting me out and putting all my eggs in the ‘but the doctor’s say it’ll work’ basket that I started to ignore some pretty clear signs from my body.

I wasn’t coping and my breathing was getting worse so I sought some advice from trusted medical professionals who eventually, (after a trip to resus, suggested antibiotics, an X Ray, several confused respiratory doctors and nurses who were desperate to give me steroids) suggested I cut down on my nebuliser to every other day or a few times a week.

Again, I followed this advice because there isn’t anything else that seems like a reasonable approach (yep, not even on Google) and continue taking the medication 2-3 times a week. Still really unpleasant so drop to once-ish a week. Still reaaaaaallllly hard.

What it actually feels like to have salty vapour blasted down your throat

It’s a weird sensation, a really weird one. Like trying to vape a high pressure hose in your garden that’s been spiked with sea water? It’s like there’s a sizeable bloke wearing chunky boots stood on your chest while someone else is tickling your throat with sandpaper. My chest sounds really squeaky and bubbly like it’s been disinfected but the crap has nowhere to escape apart from a tiny, tiny hole (think that’s the wheeze). This happens while I sit there looking like Spyro the dragon and surrounded by the sculpture I’m trying to create from vials of saline solution. Afterwards (and although I’ve been sat down for ten minutes), I cough loads and loads, can’t breathe and struggle to speak so I just croak instead.

The magic mailbox

This deserves a section of its own as it’s such a great example of the system working and is the sole reason that for a few days after finding out my medication isn’t doing anything I was absolutely elated. I was genuinely delighted with the efficiency of the whole process that it put rose-tinted spectacles on me for what it actually means when my medication doesn’t work!

Here’s what happened:

• On a Monday night after another uncool nebuliser experience, I got really cheesed-off so sent an email to this vague-sounding email address I’d been given after my last hospital visit
• Email consisted of me explaining the situation and asking for a bit of help from someone…anyone…whoever was on the receiving end of the mystery mailbox. Sent at 9pm.
• Phone call from a private number at 10.00am the next day
• It was the respiratory physiotherapist! She asked me loads of questions about my symptoms, talked them through with me and listened to my weird wheezy descriptions
• She explained in a really careful and detailed way that I should stop taking my nebuliser because it was sending my asthma wild and that would kick off the tracheomalacia issues
• She also said that she’d check over this plan with my consultant and get in touch if there was anything different
• She patiently listened and answered my “But what do I do if?” and “I’m just worried because…” questions.

What’s the plan now?

The answer is, I’m really not sure. I feel really quite vulnerable going in to this winter period without the invisibility cloak of some nebuliser ‘protection’ and kind of just want to wrap myself up in bubble wrap and hope for the best. I always knew this winter would be a trial and error period but it’s not pleasant being the guinea pig on this occasion! Will see what tricks they pull out of the hat next…