You know that pesky saying – the grass is always greener? Don’t you hate it when you have to admit you’ve fallen prey to that belief? 😊 Folks, I’ve been wishing for telehealth appointments since my son was little. Sitting on the ‘sick’ side of the pediatrician’s office with other children open-mouth coughing was never my cup of tea. Fast forward to my life with MECFS and telehealth appointments became even more appealing, so much easier, so much less exertion. Due to Covid-19 I’ve now had a few of those telehealth appointments I was longing for, and have at least a few to go. They are indeed less exertion, less energy, and less of an inconvenience for my partner to get work off, take me, push the wheelchair. That part of the pasture is indeed greener.
But I’m here to tell you, I’ve got first-world telehealth problems. Unfortunately, my telehealth experiences haven’t been all roses and green pastures. Let me preface by saying, maybe this is because I’m awkward just keeping it real, maybe it’s because I’m introverted, I’m not sure. But what I am sure of is that since MECFS decided to try take over, phone and video calls are difficult for me, cognitively. From what I understand, this is a common symptom of fibromyalgia and MECFS. The nitty gritty is, I now have several telehealth appointments under my belt, and I want to talk about them.
One was a phone-only appointment with a new specialist, and in my opinion, it was so awkward, and underproductive, not because of the doctor, but because of me. I didn’t ask questions like I normally would have because my brain simply wasn’t populating them, and the print outs I normally bring and show doctors weren’t an option. Luckily, I do have a follow-up in June so hopefully that will be more productive.
My video appointments have been better, because it’s an established relationship, but even still the screen will intermittently go bonkers with pixilation, and it’s distracting. Don’t get me wrong, I’m thankful to have had the appointments but they just haven’t been the same.
To be fair to the whole telehealth experience, I’m so tired of explaining my symptoms to new doctors (moderately terrified of their response because of bad past experiences
I think they call this medical PTSD) that I now print lists out and hand them over in in-office appts., and that’s probably one of the most difficult parts with telehealth as I can’t do that now. If I didn’t need to hand over lists the telehealth experience would surely be better. I also don’t have the energy to list all my symptoms, while typically watching their eyes glaze over (it’s happened one too many times), so the list is the perfect solution to that issue. The list means they don’t have to pretend to listen to me, instead they can pretend to read the seemingly never-ending list instead😉. The other part is trying to explain your illness to a doctor that has little to no experience, without any backup articles or doctors’ letters. Recently I was told, “POTS is common with MECFS (true) but once your Rheumatologist gets the MECFS under control the POTS should clear itself up (not true, but dreamy if any of that could happen!!).”
How do you explain to someone over the phone that their lack of knowledge with regard to your illness is incorrect, how do you hand over documentation from organizations and doctors to show the nature of MECFS? You don’t. Well…I didn’t. I’m so tired of explaining my illness to health care professionals that should know something about it, so tired of begging for care, so tired of doctors not checking the daily patient roster to see what the ailments of the patients of the day have and then at least googling the diagnoses if they are unfamiliar. I won’t pretend to understand how doctor’s days go, but if I was a doctor, I would at least try to familiarize myself with the general understanding of the illnesses my patients have, but … that’s just me.
I’ll close by saying, believe it or not, I’m very thankful for health care. I’m very thankful for where I live, and the types of doctor’s I’m able to see. I’m thankful that we are no longer losing lives to things antibiotics treat. I’m just venting and sharing my learning experiences. Next week it’s supposed to be in the 80s, so I’ll have something new to go on and on about, and it too will be a first world problem. Thank you for stopping in today.🌸
Stay safe please! So far everyone at my home is okay, hoping everyone at your home is okay too.
A few more doodles. I’m trying to use doodling as a stress reliever this month and it’s going pretty well.