My husband, Mr Happy, has just recently become chronically ill. Over the last year, he’s slowly headed downhill, and now we both kind of hobble along through life, trying to prop the other up. I’ve been sick for 12 years this year, so I’m no newbie. But hubby has always been fit and healthy: a black belt in a karate, regularly running, mountain biking, hiking… chronic illness was not on the radar.
“Not him too,” my heart whimpers, as it watches his health decline. I don’t want this for him. I don’t want this for anyone.
While he learns the ropes, I’ve been seeing chronic illness through fresh eyes again. The thing that has shocked him most is all the waiting.
* * *
You make an appointment with the GP, then wait until the appointment day.
You meet with the GP. He wants some basic blood tests done. You have the basic blood tests done (and then you wait for the results).
You book a follow-up appointment, and wait.
Basic blood tests don’t show anything – the GP has no further suggestions.
You make an appointment with a different doctor, and then wait.
He wants more extensive blood tests done.
You have the blood tests done, and then you wait for the results.
You book a follow-up appointment…and wait for it.
Blood tests show some nasty viruses (none current), which could possibly explain the fatigue. But nothing shows up that explains the weight loss and digestive symptoms.
So the doctor refers you to a specialist. You book an appointment, and then wait. The specialist wants to do an exploratory procedure.
You ring to book that, and find another long waiting list.
You make an appointment for the procedure, and then you wait.
Procedure day arrives; you have it done…and then you wait (a bit impatiently) a whole month for the follow-up appointment, and the results.
Nothing shows up.
At the follow-up appointment, the doctor told us that his suggestion at this stage was to try the “wait-and-see” approach. Basically, we wait and see if any other symptoms turn up, or worsen, and then we explore those. In the meantime we just…wait. I bit my tongue to stop myself from blurting out anything.
Didn’t this doctor realise how much time we already spent waiting?!
Every test, every appointment, every medication trial, everything is sandwiched in between long periods of waiting. It doesn’t feel like waiting. It feels like wasting. Time just slipping by. Everyone around you is going about their normal day-to-day, but you are stuck in limbo while waiting for answers, waiting for treatment…waiting to get back to living your life.
I’m sick of waiting.
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Note: I wrote this piece several months ago, when Mr Happy was slowly but surely becoming sicker and sicker, and there seemed to be nothing we could do about it. It got to the point we thought he may have to quit work, as he was too fatigued to keep up with full-time teaching. Thankfully, doctor number four has been able to help us. She didn’t want to ‘wait and see’, she wanted to ‘find and fix’!
Together we worked out that a nasty gastro bug followed by a six week course of antibiotics had totally ruined the balance of good and bad bacteria in hubby’s digestive system, suppressing his immune system, and leaving the door open for a host of nasties. Comprehensive stool tests came back positive for two parasites, a particularly bad bacteria, and a yeast overgrowth. Blood tests came back positive for three nasty viruses (CMV, Epstein-Barr, and Barmah Forest – though not all of them currently active). Post-viral fatigue + parasites + imbalance of bacteria/yeasts. No wonder he was so ill!
It’s been slow going, but we’ve managed to get rid of the parasites / problematic bacteria / yeast overgrowth. Now his digestion is better, he’s put weight back on, and his skin is no longer a concerning yellowy orange. He’s still easily tired, and his immune system is still low, so he has to be careful not to overdo things (a difficult task even for someone experienced with chronic illness).
We’ve still go a way to go to get him back to 100%. But little by little, he seems to be climbing out of the hole. Will he make it all the way to the top? Will he ever be the fit, healthy version of himself again? The only way to find out is to wait and see…
I’m sick of waiting!
But sometimes, there’s no other option.
What’s on your ‘waiting’ list at the moment? What do you hate most about waiting? I hate that waiting is not a guarantee of answers or help: I can wait six months for an appointment, and walk out at the end of the appointment no closer to a treatment than I was before!