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.
* * *
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.
xx S.
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!
Reflections Of A Bear 
There is a moment, usually quite close to the beginning of each of your new posts, where I ask myself ‘how does Sarah always manage to find the exact right words to express what has gone through my mind at one point or another since the onset of my chronic illness’? I’m sorry that both you and your husband have had to experience all the waiting. I too am tired of waiting! Chronic illness is definitely a test of one’s patience. Thank you for your insightful and wonderfully written posts!
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There are many moments – both while I’m writing a post and after I’ve published it – where I ask myself ‘Will anyone but me even read this? What makes me think people will want to read *my* thoughts? Why am I doing this?’
And then someone like you comments, or sends me an email, and I’m encouraged to keep going.
I want non-chronically ill people to be able to better understand what it’s really like, living like this. And I want other chronic illness sufferers to know they are not alone.
Thank you for your beautiful comment. It made my day ❤
xx S.
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Thank you so much for writing this, I’ve had one of those days where I broke down at the physio because he told me to ‘wait & see’, ‘keep doing what you’re doing, you’re going well’, and although it sounds encouraging, I was feeling so down on the pain and restrictions I’m currently going through that I wanted to scream ‘I am not doing well!!’.
I hate that you & your husband also go through waiting (and I really empathise with how hard it is to see him like that – I cope much better with my dislocations than I do with my hubby having a 24 hour bug) but I wanted to say thank you for writing something that resonates with me so much at the moment.
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*sigh* I’ve been there with the physio too
They mean well, but our limitations are so frustrating that being told to wait, or that we’re doing fine, feels a bit like a dismissal. “You don’t UNDERSTAND!” your mind screams.
And yes! If hubby gets a 24hr bug, my adrenaline goes through the roof! I feel panicky and overly worried, and all my Dysautonomia symptoms are ten times worse. No matter how much I say to myself, “It’s just a bug. It will pass. He’s going to be fine. We can go up to the hospital if we need to…” my body won’t listen.
Sending big hugs. I’m sorry that you are stuck in waiting-land too. ❤
xx S.
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Thank you for this post! My daughter is bedridden with POTS, so her whole life is “waiting”. Since she became ill, I have had unsuccessful spinal surgery and am now being told I need more spinal surgery, so I am waiting to decide whether to proceed with that. I cannot imagine what we would do if my husband were to become ill, too… Healthy people have no idea how chronic illness takes over lives. As a friend of mine put it, “Illness makes life go into slow motion,”
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Oh Calista! Sending big hugs to you and your family. Chronic illness truly does take over your life. Sometime you’re so ill that it *becomes* your life – you just spend all your time trying to manage your illness, trying to survive, trying to get through another day. So when someone says to me, “Oh, you’re so lucky! I’d love to stay in bed all day,” I don’t know whether to cry or scream.
xx S.
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