My lungs have a hate list. A long index of things that they dislike. It’s new. They used to be quite compatible and easy-going… but in the last few months they’ve started disliking things that they previously didn’t mind. They’re behaving like toddlers, the terrible twos. But instead of screaming over their sudden aversion to peas, my lungs are getting breathless over everyday objects! Although I still don’t have an explanation or reason for developing such reactive lungs… I am slowly learning how to ‘adjust my sails’ to live with them. The bumpy seas of recent months are calming. 🙂When I first got get ill with Pulmonary hypertension, I had no idea of how to live with it. I made mistake after mistake after mistake. I did too much which made me ill… I did too little which made me ill. I experimented with breaks and food and sleeps and vitamins. I tried pacing and pushing and exercising and meditating. For months I got it wrong, until eventually I got it wrong less and less. But by making these mistakes, I learnt the rules of my illness. Later when I developed PVOD, I went through a similar process of trial and error. And over these past couple of months of sporadic ‘tiny lungs’, I have once again been looking for the patterns, trying to establish the new rules. I’ve been playing the detective.
The calendar on my phone is now full of notes about each episode of shrunken air sacs. What I was doing immediately before, how long it lasted, what helped and what didn’t. Although it wasn’t immediately obvious, over time and after a number of experiences, I’ve now concluded that my lungs are reacting to triggers. Triggers that weren’t triggers previously! 😉 Some reactors were easy to identify: drinking next to a candle, eating in a pub with an open fire. However some were more puzzling: opening a parcel, getting old letters from a file, arriving at my holiday gite. It looks like my lungs hate smoke, chemical smells and dust! (Yep dust… that stuff that is everywhere! :-P). So no more candles, fires, chimney smoke. No more cleaning sprays, perfume, fabric conditioner. And no more creating dust!
Although it’s not easy to have lungs that are reacting to everyday objects, knowledge is power. By identifying the top items on the hate list, I’ve been able to devise strategies to avoid them. Some triggers can be easily eliminated from the house- traditional candles, perfume and strong smelling toiletries have all been binned. Some triggers can be less problematic by changing routines -Phil breaks up all cardboard boxes, carpets are hoovered more frequently, garage items are sorted outside. I hide out in the furthest room from the cleaner, or from my hubby doing DIY. Nail varnish is painted downwind in the garden, washing is only dried in the closed off spare bedroom, Phil only wears aftershave at work. Mild smelling household spray is applied with held-breath, and then only wiped clean when the fumes have subsided. I trot around quickly opening windows and doors when there is dust in the house… then trot around quickly closing them all when the neighbours light their fires! (Yep there’s a lot of opening and closing going on!).
In the daily battle of lungs versus irritants, I also have a few invaluable weapons in my armory. They’ve quickly become indispensable. My face-mask shields my mouth and nose from stray tiny air-particles (but not smells!). I look like a horror-film extra wearing it, however I can now complete tasks involving low level dust (sorting my winter wardrobe) and unknown entities (opening parcels). My bloomin’ brilliant air purifier filters and removes minuscule airborne irritants from whichever room I’m in. It cleans the house air each morning, and then throughout the day whenever naughty contaminants sneak in (chimney smoke through open windows). It gets a lot of use! But my ‘number one’ weapon is my steroid bronch-dilator inhaler. It works! 🙂 Two puffs a day as a preventative, and a few extra when my lungs are aggravated. Amazingly I now have a higher tolerance to the triggers on the hate list, so don’t react as easily (I can open letters unmasked again!). Furthermore, by taking extra puffs during a reaction, the intensity and duration is reduced. Hallelujah! 🙂
However, although it is possible to reduce and avoid irritants in the house, it is much more difficult once out the front door. I now carry my mask and inhaler with me whenever I leave the house. Triggers are everywhere, particularly at this time of year! Many of our favourite spots are now no-go areas. The local pub has a roaring open fire, nearby restaurants have candles and shops smell of perfume. Even evening dog walks are out, as the village chimneys start a-pumping. Sadly this means I’m leaving the house less, and having to change excursions to avoid the hate list. When staying in a hotel with my girlies last month, we opened the windows to aerate the lovely ‘clean’ smell, and ordered dinner to the room to avoid the restaurant. Pub lunches with visiting friends have been replaced by eating at home, date night meals have been replaced by takeaways, trips out have been replaced by more games. Thankfully my wonderful family and friends have been accommodating of my strange new requirements: not wearing perfume, not burning essential oils if I visit, hoovering before I arrive! And at my nephews’ joint birthday party, they even blew-out their cake candles in the garden!
So the recent stormy seas are calming. Normality is returning, albeit with many new adaptions. Amazingly, wonderfully, thankfully the worst appears to be over. My lungs are still getting irked when accidentally exposed to irritants, but it is less severe and for less time. And happily I have not had any episodes of full blown ‘tiny lungs’ for a whole month. Four weeks with no distressing teeny-weeny air-sacs. Twenty eight days without needing to spend a full week on the sofa. Wahoo! Although it is tricky having reactive lungs, I am actually just relieved that they appear to be responding to triggers, and not randomly. Triggers can be avoided, life can be adjusted, routines can be adapted. Randomness can’t. Once again, I feel in control. I can predict my body, keep it safe, and thus ultimately create stability. Relief. Enormous relief.
However, although I’m incredibly happy that my symptoms are more regulated, I still want an explanation for why my lungs have become hypersensitive. We’re tentatively assuming that it is unrelated to my PH and PVOD, but with such rare conditions, it can’t be ultimately ruled out. Only time will tell. As the NHS is a fire-fighting service, and having eased my symptoms, my team are reluctant to investigate further. However I’ve pushed to see an allergy consultant (but not until Easter). Until then, I’ll keep plodding along, protecting my lungs, and trying to regain my strength. After a few months of reduced activity, my energy levels are considerably lower. I have only half my normal daily energy coins, and am taking much longer to recover from any activity. It will take considerable time to regain my normal health and strength. But I’m confident I will. 🙂
So my ‘troublesome toddler’ lungs have developed a hate list… I’m hoping it’s just a phase that they’ll grow out of! 🙂