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A Perfect Capture of Life with Chronic Illness

A Perfect Capture of Life with Chronic Illness (Gliding Across That Same Glassy Ocean) | A Chronic Voice | Featured Image

A word that could probably sum up life with chronic illness is ‘mundane’. Sure, it has its (very much unwanted) moments, but for the most part you’re just cruising along, pacing, trying to avoid those unwanted moments. It’s a sadistic, adult version of hide and seek. Either I’m hiding from my over-active immune system as it tries to smoke me out, or I’m looking for where pain has hidden all its rotten candy. This month is one of continuous recovery, new treatments, and undecided plans for me.

*Note: These writing prompts are part of a monthly community activity I host. You can find the link to join us at the bottom of the post. We’d love to have you with us! Trigger warning: mentions of death.

"If I'm losing now but I'm winning late, that's all I want." - My Life is Going On, Cecilia Krull | Quote Pinterest Image
“If I’m losing now but I’m winning late, that’s all I want.”
– My Life is Going On, Cecilia Krull

Capturing

Here I am, still gliding across this same glassy ocean in August. Are you bored yet, reading the same thing rephrased, month after month? Perhaps these linkups do indeed capture what it’s like to live with chronic illnesses – how mundane it all gets. Even though the storms do get pretty rough and even life-threatening at times, no doubt.

There’s still no land in sight, and the skies have yet to fully lift their veil of gloom. A touch of calm spreads across the waters, but it’s more eerie than serene in nature. What lurks beneath, above and beyond? Everything is opaque. I adjust my course with a hesitant pause on occasion, but mostly I allow the tide to take the lead. Who can defy destiny after all? We are at the mercy of mother nature. A cold breeze makes me shiver, and I think by instinct, “please, not too much pain”. I make this request of the universe, to no one in particular. The wind rustles my hair in reply. My hair mussed up means nothing to me.

For how long do I need to sail? A small slice of shore would be nice, even if I’m forbidden to land. Although stepping onto soft sand would be nice, and I would kiss it for all its cliché worth. Other dangers lurk on land and there will be new problems to solve, but there will also be more resources at my disposal. Land feels like a distant memory. What does it feel like, to have that little bit of security? That illusion can feel so tangible when you’re not stuck on a tiny boat, floating on an open ocean. Land is fertile ground for planting arrogance, but a taste of its fine produce would be nice. With each passing day, these memories grow rosier and more colourful. I blow them like glass, reworking their translucence into something more wondrous to behold.

Financing

My calendar for August actually looks quite busy. There’s the appointment with the neurologist, rheumatologist, gynaecologist, and cardiologist. Do you know what that means?

Money.

Something that my parents still help me out with, when they should be retiring soon. They just helped to pay off last month’s $3,000 A&E bill, because there’s no government subsidy for A&E. Let’s hope that we get the green light to claim it back from my insurance company. I miss those days when I had my own pay cheque, and could afford my own holidays. There was a price to pay – massive flare ups, and I wouldn’t trade that sort of pain back again. But damn, it was nice to go on holidays. Nothing makes me feel more alive. I should rephrase that – travelling makes me feel most alive. I do enjoy fancy trips in nice hotels. But I feel most alive in places where I don’t understand the language, where it’s different from back home. I love going far far away from the city on overnight trains, in search of ancient artistic treasures, and mindblowing wonders on our planet. It makes me feel small and insignificant. But it also makes my problems feel that way.

Maybe I should pull up my big girl panties and try again. Writing and blogging aren’t earning me enough income for now. We’ll see what I’ll have to do, when forced to a crossroads. For now, I cruise along on this tiny ship of mine, and will try to keep it afloat.

Controlling

I will also need to insert Nexplanon this month, as I’ve already suffered two devastating and bloody corpus luteum cyst ruptures. My blood count had fallen to dangerous levels both times, as I bled continuously from my blood thinning medications. It’s always an ordeal finding me blood for transfusion as well, due to my rare blood conditions. There were no perfect matches both times, and I shudder to think what would have happened if my blood count had dropped a mere half a pint more. Such ruptures do happen to healthy women during ovulation too; but they mostly just feel a mild pain before it subsides. None of this egg explosion nonsense.

(Read about my experience here: What it Feels Like to be Refused Treatment by a Hospital’s A&E)

The problem with birth control are the interactions with blood clotting disorders such as mine. Almost all of them increase the probability of blood clots, which is the reason why I’ve never even considered them before. To reduce the risk of this happening, we will need to avoid the ones with oestrogen, and select from a range of progestin ones. Amongst the three most suitable options, I had to eliminate two simply for the fact that they can cause bone loss. I already have osteopenia from long-term steroid usage. So that left me with Nexplanon. The only comfort I get from this idea is that the side effects are reversible immediately upon removal, including fertility. I like having my periods regularly, but let’s see how this goes.

Exchanging

Speaking of which, my two parrotlets dropped dead in July. Dropped dead are the right words. Archer II fell off his perch like a feather, with barely a sound. We were having dinner and watching the first episode of La Casa de Papel (Money Heist), and it was a few minutes before we noticed his dead, warm body upturned on the bottom of his cage, claws gripped like a vice. I was bawling my eyes out in absolute shock. I thought he might have been still alive. Weren’t those his eyes peeking open? But no, my ex-partner said he was dead. We buried him under a big tree in the park. There were a few homeless people around, a sight that Singapore tries to erase from the public eye for the most part.

That same night his partner, Piper, had a night fright. She could no longer grip onto the branch, and was stuck on the ground. That didn’t bode well, and she was dead within a few short hours, too. We dug Archer II out and unwrapped his handkerchief grave. Hie eyes were wide open again, so I asked my ex-partner to shut them. But he replied that there were none left – ants had make quick work of them. There were only black orbs of space staring back at us. The only comfort I derived from this is that they get to return to the earth side by side. Archer II adored Piper. She was his goddess, and he worshipped her night and day. I can only imagine the extreme joy on his face and his excited squeaks, to see her there with him on the rainbow bridge. Just as they died, new life was born. Two cockatiel babies hatched the day before and after. Is this the cost of life?

I plan on handfeeding this new batch, even though they will all need to go to new homes. This period is especially crucial in a bird’s life. It is so much harder to bond with them after. I want to earn their tiny trust, and for them to let me ruffle their little punk crests, and coddle my cheek against theirs. This is the price of life. It isn’t an exchange by choice and I would much rather my parrotlets were alive, but even I am only part of its neverending, unbreakable cycle.

Motivating

You know what would really inspire me now? A trip overseas. Yes, I’m jumping back to this topic. Probably sounding a bit of a spoilt brat, too. But yes, that would really inspire not just a little, but a lot of life back into me. It was after all, my primary source of motivation when I was healthier. Scratch that; back when I was younger, more ignorant, and more willing to put up with stupid amounts of pain.

There are many ideas and plans swimming around in my head, with this recent cordial breakup and loss of support in many ways. I’d like to go back to school, travel, do this and that and that. But at the end of the day, it all goes back to paragraph one.

Thank you for reading, and I hope to read your responses for June’s prompts too. CLICK HERE to submit your own entry, and to read about what others are up to as well!


“If I’m losing now but I’m winning late, that’s all I want.” – Theme song from Money Heist, when Archer II passed on.

*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.

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    For More Insight:

  1. How Progestin, a Synthetic Female Hormone, Could Affect the Brain (theatlantic.com): http://bit.ly/2YliEth
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17 comments

  • Hi Sheryl. Thank you once again for giving inspiration with some great prompts for this month. I just love your thought evoking writing, your posts are always a pleasure to read. So sorry to hear about Archer II and Piper.

    • Hi Jo,

      Thanks so much for your kind compliment! Your posts are also always a pleasure to read, even if filled with sad thoughts or the link. So relatable and true. Sending love.

  • Hello once again Sheryl; and thank you once again for giving inspiration with some wonderful prompts for this month. I just love your powerful writing! The imagery and vivid descriptions you use are so beautiful and exquisite. The paragraph you wrote for capturing was wonderfully eloquent.

    I am so sorry to hear of the loss of your much loved parrotlets. It must have been so heart-breaking for you. I know how hard a loss it can be, it’s been three years since I lost my dog and I still miss her and her loyal companionship everyday. I hope the knowledge that you gave them plenty of love and a wonderful home brings some comfort.

    Take care

    Rhiann x

    • Aww..thank you so much Rhiann. I’ve received a few kind words both from people I know plus strangers today, it must be my lucky day! 😛🤩Yes pets are such joy, the death of them is always heartbreaking. I’m sorry you lost your dog, too. Such dear creatures. I hope they enjoyed their time on earth, too. Sending hugs x

  • It breaks my heart that you lost your little friends! I have thought of you many times when I have made myself venture outside to receive the healing comfort of sunshine, wind, and best of all, birdsong. I have to be hunkered down and shaded by sunglasses if the migraine is bad, but the song of birds is so freeing. I’m praying for you, friend! Thank you for your honesty 🙂

  • I’m sorry to hear about your parrotlets. I can really relate to the connection you have with your pets. I absolutely adore animals and I understand how painful it can be when you lose them. But the connection we have with animals can also bring so much joy.

    I also feel really inspired when I travel. It really does put your life in perspective when you realise how small you are. I haven’t been able to travel very far this year due to my health and finances too. But I decided to visit family in the north of Scotland instead which has actually been very inspiring for me. I hope your finances and health improve and you manage to travel again soon xx

    • Hi Jennifer, yes pets bring so much joy, hence the grief when they pass on. But the grief is worth it, they will always have a special little corner in my heart 🙂

      I’m happy to hear you could have a change in scenery, and to the highlands, even better! Nature always helps, I hope you managed to get some fresh air, and quality family bonding time 🙂 x

  • so sorry to hear about Archer II and Piper, it’s always so difficult to lose a pet. I hope your medical insurance comes through and things get a little easier financially for you. And I really do hope you manage to get your trip overseas x

    • Hi Anne,

      Thanks for your lovely words. Yea never easy, but they provide so much mutual affection whilst alive too, that it’s ‘worth’ the grief 🙁 I hope you are doing well yourself! x

  • Aw Sheryl I’m so sorry for your loss. I hope they will at least be at peace together and up to lots of feathery mischief. I too have been dreaming of travelling again the courage to just go like I used to regardless of languages spoken or much detail mapped out. I’d kiss that cliched sand right along with you. Maybe one day we can have a chronic holiday lineup. Good luck with the nextplanon I hope it goes really well for you xx

    • Hahahaha! That made me laugh…kissing the clichéd sand together. That we shall do! Yea for me it’s more of finances. But whilst I’m still alive and breathing, I know that not all hope is lost. Often you just to turn a corner…the unknown waiting time gets on your nerves, but wait you must haha.

      Thanks yes they were known as the gangsters in the house because they were…always squabbling with the others in a pack. So I hope that now they’re immortal, they’ll be up to more feathery mischief fun!

  • I am sorry to hear about the loss of your birds- both is cruel.
    You should never worry about your blog being boring by the way as you write so well! I can imagine how life feels mundane at times. To me however reading your stories is the opposite, if that makes sense!

    • Thanks for the encouragement! Yes, the only comfort, really I find, is that they passed on together. It’d be more heartbreaking if one lived on without the other 🙁

  • You really are getting it rough right now. I feel sorry for you,; that sounds patronising- I don’t mean it that way. I have Sjögrens Syndrome, Fibromyalgia and chronic pain in my left foot after a bad break & dislocation- so I know a little of what you mean.

    At the moment I’m between flare ups so I’m making the most of it and doing everything that I can’t when I’m bad.

    • Hi Sonial,

      Thanks for dropping by 🙂 It’s been a not so great year, but hey, who doesn’t have those, right? Just hoping it gets better, and that yours does, too! Sending good vibes! x

  • I know how you feel. My mom has helped me out financially way too much and she is retired. It seems wrong that she has to do that because I make so little on disability and have so many costs associated with it… and she also drives me everywhere because of the vertigo.

    I am sorry you lost your birds. I too lost two beloved cats… so close together. It hurt so deeply. And now I just have Charlie left, who is ten, and I fear at his age he will be gone too soon as he already just developed hip arthritis. I know my two elderly cats had a real good life though. And a long good life at 16 and 14 when they passed. It just hurts a lot and I miss those furballs.

    • Yea…kind of makes you feel like a loser at this age, but obviously that’s not how we should be comparing it – equality vs equity, ‘independence’ is subjective based on what you already own or started out with, after all.

      That’s something I wonder about btw…how others in huge countries get around (I have epilepsy, so can’t drive). Here it’s really convenient and affordable to dial a cab at any time.

      Yea my babies…wished I had time to stroke their feathers before they died. Dropping dead is not good. Birds are so fragile, the tiny ones at least. And I’m sorry to hear about the loss of your beautiful cats, too 🙁 Never good to lose a pet, although I don’t regret a thing about getting them in the first place. That’s the ‘price to pay’ for connection. So worth it, so painful.

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