Juggling appointments

Warning: contains GIFs

Being chronically ill is much like juggling countless juggling balls, only to realise no one has ever actually taught you to juggle, and you have to muddle on as best you can on your own, with the threat of the full weight of your life’s obligations coming crashing down on you at any given moment.* Some assume that having a chronic illness absolves you from mundane life tasks, but the opposite is true: you have to deal with the same challenges everyone else does, with limited resources, as well as the other shit chronic illness throws at you.

Illustration of a red haired girl throwing her arms up to juggle three apples.
Ooooo, open source images.

I feel like I’ve spent the past 6 months or so buried under the weight of medical appointments that have gone precisely no where. I saw a gynaecologist to investigate possible causes of my severe abdominal pain, and even had a costly laproscopy, only to find nothing. Undeterred, I then pivoted to the gastro field, working with a dietician and gut directed hypnotherapist**, which is ongoing and costly and providing little result.

Meanwhile, an ENT performed a costly nasal scope, followed by a costly nose cauterisation for bleeds with more costly treatment and advice (do you see a pattern forming?) for my chronic rhinitis which has provided absolutely no relief. I don’t have allergies, nor do I have endometriosis, cysts, coeliac disease, notable food intolerances or anything which might actually be causing my troublesome symptoms – all I have, it seems, are the symptoms themselves.

GIF: a woman attempts to throw a magazine out a window, which is closed. Text reads: let's throw the expected out the window.
my body @ me

 

This month, I saw a cardiologist, who was helpful enough to do an initial telehealth appointment, and even understood the general nature of my case (POTS, fairly well medicated, my main concern is ME/CFS). But in the aims of potentially improving my symptoms, he prescribed an entirely optional, non-PBS medication that I’m not sure I could ever afford. Like so many medications, it may or may not make a small difference to my quality of life, which makes it even harder – am I willing to shell out a good portion of my income on a medication which may provide small improvement that I might have to give up one day due to financial stress?

Homer Simpson is on a wrecking ball, bouncing between a literal rock and a building named
Heh.

 

Not only this, but I have several specialist appointments coming up – all in the pursuit of answers. At least, having seen a doctor once and ascertaining they aren’t going to throw me out the door, screaming “FAKER!”, they become a known quantity. Who knows how these other specialists will treat me? Meanwhile, I continue to see my GP and psychologist, who are essential at keeping the boat afloat but don’t seem to plug any of the holes which allow water to gush in.

And for every specialist and allied health professional I have seen, there have been an equal number in Melbourne and Geelong that I have contacted who have refused to take on my case via telehealth. So, there’s some indifference mixed in with a bit of kindness and pity, with no answers to be had. I feel like my medical history can be summed up with the shruggy guy: ¯\_(ツ)_/¯

Dumbledore raises his arms in query, then places them on his hips.
¯\_(ツ)_/¯

 

When you are healthy/non disabled, you kind of assume that the healthcare system has at least some answers. You go to a doctor, they might refer you to someone else, but at some point there is validation and treatment. It doesn’t ever cross your mind that you might be stuck in some endless merry-go-round of seeing medical professionals who can’t really help you, but you have no choice in seeing anyway. It’s as dehumanising as it is infuriating.

I know I see so, so few doctors, specialists and allied healthcare professionals compared to other chronically ill patients. Really, I consider myself lucky to not be shelling out hundreds each week in medical appointments, and I do get some time to myself.

But when you have so many balls in the air, at some point or another you start to wish that fewer of them were mind-numbing medical appointments, and more of them were just fun – or at least allowed me to fulfil some of my other obligations.

Mary Poppins flies away with her umbrella. Text reads, no fuck this I'm done. I am so done.
At this point, I feel like I’ve shared these memes before, but I’m really feeling Mary Poppins today.

 

*I feel like this is one of my clunkiest metaphors ever, but my brain is feeling extra-clunky today after having spent 2.5 hrs on hold to a service company.

**Yes, this is a thing, and even has some evidence behind it. As efficacious as FODMAPs in treating IBS, it seems (though naturally I can’t find the study I’m thinking of).

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

14 thoughts on “Juggling appointments”

  1. Oh you know I relate! After many violating experiences they finally decided I have interstitial cystitis. I will admit, not having citrus or acidic foods has helped. But the pain, it’s comparable to labor at times. I’m so sorry you went through so much to end up where you started. It’s so frustrating. My ENT sent me to PT for vestibular issues but was never concerned about my 100% of the time drip down my throat. I know so sexy 😂 No matter how you slice it and dice it, it’s unfair. And it’s shocking that we all of have these symptoms but some Drs are stillll saying 🤷🏻‍♀️ must be in your head.

    Although, silver lining. I’ve been slowly watching the videos from the OMF on FB from the most recent meeting. They are getting closer. Crossing my fingers for you and me and all of us 💙💙💙 Thank you for sharing your journey it helps knowing we aren’t alone in these experiences.

    Liked by 1 person

    1. I don’t know a lot about IC but what I do know is that it can be extremely painful. I’m really sorry that is what you are dealing with and that you had to go through violation to get that diagnosis.

      Turns out I have that drip down the throat too! Constantly. I just thought it was all coming out of my nose 😂 Guess that explains my watery throat.

      You are good, watching those videos. Sometimes I just can’t bring myself to. I must watch the videos from the latest Emerge International Conference, nearby in Geelong. Thank you for being there through it all ❤️

      Liked by 1 person

  2. I feel your pain, Siobhan. When I was a kid I went through each department in a hospital. I had fever often,stomach pain, headaches, rashes, and in my early teen years started nose bleed often, as same as your case the doctor couldn’t find major cause of it but symptoms continued so I grow up with all kind of medications.
    At age of about 21, I stopped taking all my medications ( which I’m not encouraging you to do so) as I was tired of them and started to research about healthy diet, healthy living, exercise etc…
    In year 2009, I was diagnosed as fibromyalgia , still I haven’t taking any medication since then, because I feel better this way. I am 53 years old now, living healthy and fabulous life.

    Liked by 1 person

  3. Sorry you’re dealing with all this. So many go through endless rounds of phone calls, paperwork, appointments, tests and over and over again. I think that there ought to be social workers or other pros who can help people navigate all this messy terrain.

    Liked by 1 person

  4. I know you had at least one post on: please do not tell me about “Aunt Harriet’s” “cure” for CFS & related disabilities. But it’s all I’ve got. This doctor’s protocol might help. His protocol helped someone I know. She never met with the doctor, she did not buy any of the medications he sells although she might have bought some elsewhere. I am not sure what she chose from his protocol to do, but she was able to return to work in a year. That was more than 5 years ago. I know this is vague but, I do not know more.
    http://vitality101.com

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    1. Ah yes, Dr. Teitelbaum is well-known in the ME community. Some of what he promotes makes sense, a lot of it is in the realm of making promises he can’t keep. I think I’d be more inclined to favour him if he didn’t keep conflating the term “chronic fatigue” with “chronic fatigue syndrome” and promise recovery.

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  5. I’m so sorry you’re having to deal with this b.s. I experienced it myself, and thanks to our “health care” system in the U.S., even with insurance I had to pay for most of the insulting and frustrating interactions myself. My medical professional friends sometimes talk about how they don’t understand why their patients try “ridiculous” alternative treatments – I try, but it’s hard, to explain just how frustrating, dehumanizing, and desperation-making the chronic condition can be. Sending good vibes and sunshine your way from the desert Southwest 🌵☀️💗

    Liked by 1 person

    1. Thanks Jenny. It’s strange as on the one hand the medical profession often accuses its patients of not wanting to get better…but then they demonise us for looking for every possible alternative. I suspect if some of them were forced to navigate the medical system as a patient they’d soon change their opinions.

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  6. Actually I think a lot of us have various conditions that we’ve tried without success to at least get a diagnosis.

    No, scratch that, a lot of WOMEN have… because we all know that women are only faking it. Sigh.

    It took me nearly 20 years to find out why I am going blind in one eye (cells in my right eye apparently mutated, and I have retinitis pigmentosa in that eye only). One GP refused to give me a referral because apparently I was ‘imagining it’. I do wonder if he ever read the report from the professor who diagnosed me.

    It also took me about the same length of time to figure out why I had such painful sinuses that I’d sometimes be bedridden – a wonderful GP suggested cluster headaches, and after lots of googling, I have them largely under control.

    Despite asking countless times if my severe period pain and heavy periods was normal, it wasn’t until I had a post-menopause bleed that I was finally sent to a gyno, who abused me for not doing anything about my endometriosis. Because OF COURSE I had never bothered to mention it to anyone! Arggg…

    You have my heartfelt sympathy – I can live with what I have, although the endo made life very difficult for a few days each month until menopause.

    I wonder what would happen if we all looked those dismissive doctors in the eye and asked in a clear voice ‘What would you do if a man presented with these symptoms?’.

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