This is a fantastic post, highlighting something I have been struggling with a lot recently. Especially this past week…
Over the course of Sunday/Monday night I kept waking up and couldn’t sleep for a long time. Then, at one point, I was laying on my back with my arms crossed over my chest and started shaking uncontrollably- I was conscious during this but couldn’t voluntarily move or stop the shaking.
The shaking lasted a few seconds, stopped for a few seconds, and that repeated about 3 times total; I was able to move one leg during the break sessions but not my arms or anything else.
After that all stopped, I started having hallucinations. They started with an auditory hallucination, where when I turned my head to the right I could hear very loud music, but it stopped if I turned my head to the left. Then I had one hallucination that involved Mr.Liar waking up and saying something to me (I can’t remember much of the details on this one, but I do remember a feeling of anxiety) and I only realized it wasn’t real when I noticed the night stand wasn’t the same as what we actually have next to our bed. The last one I remember was of the dog coming into the room, barking once, and whining–all of which is very unusual for him to do; he only does it is he is feeling very sick and needs to go out immediately. I realized this wasn’t actually happening when Mr. Liar didn’t wake up/get up because he would immediately do that if the dog was really there.
Now, three days before hand my psychiatrist had started me on Wellbutrin XL, hoping it would help with my brain fog and fatigue. So my first though was that this was a drug reaction. And yet I still took my prescribed dose when I got out of bed that morning. I knew I really shouldn’t have, and when I called all my doctors to inform them of the situation they said to stop taking it immediately, but I have to admit, I was kind of hoping I would have a similar reaction at work that day… somewhere were someone else would actually see it, and immediately take me into medical facilities. Just a bit of back up to reinforce that I didn’t just imagine the whole thing, That it actually did happen…
At the same time, it was a horrible experience, and I am incredibly glad it didn’t happen again, but I have been struggling with this “Munchausen Effect” feeling all week (and honestly before that, but this week really brought it front-and-center to my attention.)
Thank you T for writing this and articulating the feeling so well.
This Little Lyme of Mine
We live in a world today where chronic illness runs amok in many of our lives. For a lot of us, getting properly diagnosed and treated is an attainable goal. But for a few of us, the diagnosis eludes doctors, or worse, we are labeled with extreme prejudice by burned out doctors, and either way a proper and effective treatment plan is out of reach. So we go from doctor to doctor, have test after test, and still we get nowhere.
You start to appreciate those few doctors who really tried to help but came up empty handed, and you resent the ones who blew you off with crude remarks like, “it’s probably just a fibro flare or CFS.” Their tone nothing short of apathy or boredom. They might as well tell you that your health, well being and immense suffering is no big deal. Once it has been suggested…
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In Academia there is a prevalent feeling referred to as Imposter Syndrome–the feeling that you’re a fraud, that you don’t belong. It’s a feeling that, despite any evidence to the contrary, you don’t deserve to be where you are and don’t know why others think you’re worthy or valid to be where you are. It makes you question yourself, your abilities, your worth.
And I feel like having undiagnosed health conditions is the same, in a way. An Opposite Imposter Syndrome.
It starts because I know something is wrong. But then test after test shows nothing conclusive; doctors ignore me, or throw up their hands in defeat; symptoms are not constant and leave not only doctors but me questioning their validity. Am I experiencing these things, or simply making too much out of something normal? Am I actually sick? Is there something actually wrong?? Am I actually a hypochondriac?
Unlike Academia, where I continue to have evidence supporting my abilities, here all I have to reassure myself is that I am doing what I can to feel better… I am visiting doctors and pushing for tests because I do feel poorly and do want to be taken seriously. I have been correct twice about conditions that were hard to diagnose (endometriosis, gastroparesis). I am feeling these things, which are a departure from my normal; and once they become my normal I do almost forget about them to the point that I don’t even think to mention them to doctors anymore.
But then I still question things, like:
Do I want to feel better?
I mean, my obvious answer is I do. I do. The two years I had of endometriosis relief have been wonderful, and I am certainly not enjoying those symptoms returning in anyway. I would love for them to be gone forever. …But I don’t… I don’t know if I know how to be healthy any more. If I was to wake up tomorrow and be completely healthy, what would I do? How much of my time would I spend just waiting for symptoms to return? Which I guess it just comes down to adjusting to changes. I’ve adjusted to these changes, I would adjust to being healthy again, and would enjoy it.
Am I sick enough to behave like I behave? Am I using being sick as an excuse or am I actually doing things according to my limitations?
…I kind of lost my train of thought here, and my brain is a jumbled mess. I guess it all comes down to: questioning yourself sucks.
I tried to unlock the unlocked building door with my office door key when coming into work this morning… It’s going to be a long day.
Thanks cognition. Guess I won’t be getting anything done.
I talk a lot about my illnesses. I try to be transparent and open as possible about what I’m going through and how I’m feeling in the moment. Sure, I’ll do the customary lie, and say I’m fine or doing okay to well meaning strangers who are trying to be polite when they ask how I’m doing. But with people I know, and on social media, I try to be both honest and upfront about how I’m doing. Why? Because this is who I am.
Being ill in any way is often stigmatized, and even moreso ignored. But being ill is a part of my life, and a part that will never go away. It is a part I need to come to accept, and even embrace. My illnesses don’t define me, but they are a part of who I am; they shape my every day experiences and color everything I do. I have to consider my illnesses on all occasions, and I don’t want to be ashamed of that, or hide that. It is part of my experience. My life.
But I’ve noticed people don’t know how to respond. The notion of talking about your illnesses is so uncomfortable (especially stigmatized ones and chronic ones) for most people that it simply can’t exist.
People feel the need to offer apologizes for how you’re feeling. I get of a lot of “sorry” when I’m certainly not looking to make anyone feel bad about my experiences. And I get “sorry” is in part sympathy–and maybe empathy–a reaching out to express something because they otherwise don’t know how to respond. But sometimes it just feels uncomfortable. Maybe because I’ve accepted this is my life, I feel that you can too.
And I don’t know what response I’m looking for, if any. I don’t know what I would find preferable for someone to say to me when they are looking to express some connection for what I am feeling and wish me well… Maybe, “I hope this moment passes quickly.” ? Because “Hope you get better” or “Hope you feel better soon” sort of rub the wrong way with chronic illnesses… even when I know the intentions are kind and genuine. I won’t get better;even if after moment passes, it will return.
Do any of you other spoonies have thoughts on this? I’m sure I’m not the only one who has experienced these responses and felt these feelings. Is there any responses you prefer? And, how do we help the healthy community adopt and accept these responses?
I had my endometriosis excision surgery almost two years ago. And it was life changing. I honestly didn’t remember how being pain free felt until after the endometriosis lesions had been cut out, and I had healed up from surgery. And that’s even with the gastroparesis pain I didn’t realize I was having.
It’s been about a year since I stopped my aromatase-inhibitor and progestin. I haven’t been on any hormonal control since.
And, I am terribly disappointed to admit, I think my endometriosis is flaring again. Either it wasn’t all removed, and what wasn’t removed has grown; or it has returned; or my possible adenomyosis is getting much worse and mimicking endo symptoms. No matter the mechanism that familiar pain is returning. It started just with my periods… the rectal pain, the vaginal pain, the ovarian pain, the sucker-punch to the gut… but now some of the pain is occurring between periods as well. That pressing, cranking, outward ballooning feeling… like I imagine one of those Medieval pear torture devices must feel, is currently making me miserable.
I knew endometriosis is a chronic condition, and that my journey with it was not over with my surgery, but I was hoping for a few more years before any symptoms returned.
August is GP awareness month.
This will be my first year with [diagnosed] gastroparesis, and I hope to post a few more things about the condition as the month progresses.
All I can say right now, is apparently my stomach is eager to kick it off. Yay nausea -_-
Gastroparesis is caused by partial paralysis of the stomach, via damage to the vagus nerve. In many cases this damage is idiopathic, meaning doctors have no idea of what caused it. Mine gastroparesis has earned itself that idiopathic label. But as I’ve been feeling worse, I’ve been looking into causes and symptoms of vagus nerve damage and think that the damage to my vagus nerve might be more extensive then just in the region of my stomach.
According to the Medline Plus definition autonomic neuropathy is a collection of symptoms resulting from damage to nerves in the autonomic nervous system. Chief among these nerves is the vagus nerve. And I have many of the symptoms listed on the Medline Plus site. It would explain why my pupils are occasionally different sizes, why I physically startle at even the tiniest things (like the windshield wipers I just turned on, or someone sneezing), my heat intolerance, my “not asthma, asthma”/breathing suppression, why I don’t notice I need to pee until I almost can’t hold it, why I choke on my spit so easily and feel like something is stuck in my throat sometimes, and why I sweat like I need to cure the drought.
Which, if is the case, what caused my vagus nerve to be so damaged? It seems awfully widespread to be caused by the degeneration in my cervical spine- but could that be it? Could I actually be hopeful that I could address my cervical spine (which up to this point has been blown off) and maybe fix some problems? Or should we be looking more closely for something else that could be causing damage? I really don’t think my vagus nerve is just going to become damaged without some sort of cause…
But of course all of this requires I talk to my doctor about it- and I honestly don’t know if I have that kind of strength right now.
I hate bringing something up and getting blown off. Having tests come back repeatedly showing nothing. I hate breaching a subject and feel like I’m being judged for not being satisfied with the diagnosis I already have- like I’m seeking out more, when I really just feel like something is still unaccounted for, still missing, from the “what is wrong with me” puzzle. I hate the vulnerability of not being able to do anything if my doctor doesn’t agree with me and turns down my request for more tests or when a specialist declares they’ve done all they can for me and won’t see me again. I have insurance, I have money, I am desperately trying to do everything I can to get better, so why are you making this so difficult? Why are there so many gatekeepers in medicine, whom I must prove I’m worthy to be seen by, to be taken seriously by, to be believed?
Apparently I need to discuss this with my therapist on Wednesday. Hopefully then I’ll be able to approach it with my internist and maybe get back to the neurologist. Maybe then we’ll make some more headway and I won’t feel like my world is always collapsing on me.