neuropathy

Brain fog from new supps recommended by the results of the private lab test recently received has me feeling like I’m in a state of arrested development. I can’t easily get out, and I’ve become a pariah to most who know me. I’ve written about this before… many people don’t know what to say to me, so now they simply say nothing at all.

But that doesn’t make it hurt any less.

Feeling like if I’m not whole and actively participating in life, I am not worthy of their time. It cuts ever so deeper when I realised that when I had nothing left to give, I lost most of my family. Many are apparently “there for me” but in an abstract way only that doesn’t require them to do more than send me texts. I have been relegated to acquaintance status. And I find my health problems are conveniently diminished by the use of reductive phrases like me being “sicky-poo”. One; I haven’t been “sicky-poo” since I was a toddler and two; I know this is a means to downplay the severity of my illness, because you don’t have to show up for someone who you refuse to acknowledge as being chronically ill.

Then there’s the people who treat chronic illness like it’s a competition.

I’m sure you know the type. If you complain about sleep problems, they instantly bemoan their own. If you’ve stubbed your toe; they’ve broken their own. When I was hospitalised with chest pains and high blood pressure, a family member had to change the conversation to them having visiting the hospital for an ingrown fingernail. Apparently routine outpatient treatments are equatable to being admitted to a cardiac assessment ward.

Being chronically ill, brings out the worst in most people.

And to add injury to insult, I find myself having to self treat and order my own lab tests to try and improve my health. Of course, the first thing doctors will say is that I shouldn’t self treat or self diagnose, yet in their unwillingness to help me, what else am I supposed to do? I’ve lost count of the number of times I’ve been declared to be the picture of perfect health based on basic bloods. Yet the advanced lab tests I have done reveal a completely different picture.

Worse, poorly informed doctors can hurt patients with bad advice. Case in point; the private GP who told me that I should treat my heavy metal poisoning with graded exercise therapy (GET). Never mind that it’s been scrapped from the treatment guidelines for people with CFSME, moreover, my body is so depleted of nutrients and my detox pathways so overloaded with oxadative stress, forced exercise would undoubtedly make me so much worse.

And I am no exception to the conditioning that society attachs to looks and our worth.

Which makes my continued hair loss and the burning peripheral neuropathy, yet another assault on my everyday life. It’s hard to feel like you matter when you know you are an afterthought to the people who proclaim to care about you, have doctors invalidate your illness, and feel the eroding effects of your condition on your body. I feel suspended in time, yet time is taking it’s toll on me nonetheless—both physically and mentally.

I’m not entertaining any thoughts of ending it all, but I can’t help but think of what my funeral might look like. A staged event with all these people rushing to say wonderful things about me after I’m gone. Virtue signalling writ large. There may even be some tears. All this from people who can’t be bothered to speak to me while I’m still here.

As always I find that whatever I’m going through, there is someone who has covered similar ground and in this case I find myself thinking of Monty Python’s “Always Look On The Bright Side of Life” from Life Of Brian. Specifically this part…

“Life's a piece of shit, When you look at it, Life's a laugh and death's a joke, it's true, You'll see it's all a show, Keep 'em laughin' as you go, Just remember that the last laugh is on you.”

#MentalHealth #Thoughts #MyCondition #HairLoss #Neuropathy #PeripheralNeuropathy #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #BrainFog

I am all of my #ChronicPain #mayordepress#fybromialgia #Neuropathy #AnxietyAttack #Migrane
But with all... ,I AM FABULOUS, I AM ME
HAVE A NICE THANKSGIVING EVERYONE

Do you have any comfort items, accessibility tools, or even pets that help you while you're in bed? What makes your bedside helper helpful to you?

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis #Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness #alwaysinbed

Frank Sinatra famously sang in “It Was A Very Good Year”—a survey of his life of sorts—observing that it was a very good year when he was 17, and again at 21, and 35. Later the days grow short and he finds himself in the autumn of his years. Frank doesn’t share with us what age he is, but it’s 2022 and I’m 42, and I feel that I have reached the autumn of my life.

I am rooted in my bed. I can stretch my limbs as far as downstairs maybe once, twice, a day. I manage to water myself about twice a week, but even then, my trunk groans and creeks with the effort. Most things that I enjoyed when I it was in the summer of my life, have lost their lustre. And like the autumn tree, I have begun to shed my hair.

My branches held onto my leaves as long as possible. For that I cannot fault them. The rings of decay from the physical—and emotional—stress that were forming unseen inside me just become too many, and without my awareness. I saw countless doctors, all of whom failed to identify the rot that had set in, declaring me a mystery with my inverse T-waves, shaking limbs, falling leaves, and general failure to thrive. Finally, after two emergency room visits, a hospital stay (2 out of 5 stars, do not recommend), I finally saw an endocrinologist after a two month wait. He was confident that I had most likely gone from a state of hypothyroidism to hyperthyroidism without knowing it, for at least a year. With all the stress this imbalance of hormones placed upon my body, my hair started to break and then fall out.

So now I am in the literal autumn of my years.

The forecast is hopeful in that with the right treatment, most of my hair will grow back. And, after having weathered an unrelenting storm for the better part of the past year, my body just wants to hibernate. I am grateful that we are approaching winter, which makes sleeping all day feel like less of an indulgence. But I think about my hair loss and how for the past two months I have been lost for the right words to talk about it… particularly in the absence of a diagnosis.

There are things I can tell you though.

I can tell you that even though I couldn’t walk, developed alarming peripheral neuropathy, and needed a wheelchair, the thought of losing my hair scared me more. Despite developing what the doctors repeatedly referred to as “concerning” cardiac symptoms, my concern remained with the loss of my hair and with each parting strand, a part of my identity felt at risk. I can tell you that after being admitted to hospital for observation, I became even more afraid when my body hair started to fall out. Making each trip to the bathroom into a turbulent storm of anxiety, grief, and depression, as my body continued to shed more leaves.

This being a major outward sign of my condition, every day of increased hair loss made me feel like I was ever closer to being visited by the famed hooded logger, and thrust into the great wood chipper. And no Friends like Pheobe, Monica, and Joey to save me.

As I fixated on my hair loss, I learned many things.

I learned that there are all sorts of potions that you can buy, that promise to help regrow hair. There are wigs… so many wigs. But the choice really only comes down to two questions. “Can I pull off this radical new look?” Or, “if I cut this wig in a certain way, will it make me look like I did before?” Thyroid related hair loss apparently means any hair that does grow back, might not be the same colour as before. So that’s kind of like a present to look forward to, only it’s unlikely to arrive by Christmas. A full head of medium length hair apparently takes two, maybe three years to regrow. In that respect at least, I feel like I will be like a sapling again, with literal tufts of juvenile hair sprouting between what remains of my established leaves and locks.

I can tell you that in addition to the emotional pain, hair loss hurts, quite literally. It hurts to pull on it, and my hair band falls out often—I just don’t have enough to bunch together anymore. So I’ve invested in cancer hats. Only I don’t have cancer, so I also feel like an invading alien species. And of course derogatory as the term is, it is accepted that cancer patients are “brave”. The only thing worse than this enforced bravery is that there is no accepted lexicon, or field guide for what I am.

But I can tell you how I feel.

I feel like the lonely tree in a forest that doesn’t look like, or feel like, I belong with the others. I’m not quite sick enough to be offered any support to help prop me up, even though every day is a struggle just to hold myself upright. Being my kind of sick is to be that lonely tree in a field that people are happy to shelter under in a storm, but quick enough to cut down at the first sign of disease.

And I do not know when it will be spring again.

But I hope that when that day finally arrives I will rush out into the wilderness and hug every tree I see. Even more so in winter—for I will know what it is like to be bare, and suffer from a lack of kindness or care.

#HairLoss #Hypothyroidism #Hyperthyroidism #GravesDisease #Grief #Loss #Depression #Loneliness #ChronicIllness #Alopecia #MyCondition #Anxiety #Stress #MentalHealth #MightyTogether #SpoonieProblems #Selftalk #Selfimage #Selfesteem #PeripheralNeuropathy #Neuropathy #WritingThroughIt #Disability #Homebound #ChronicFatigueSyndrome #Spoonie #Hope

We're nearing the end of Gastroparesis Awareness Month. As we've discussed this month, gastroparesis can be a very challenging condition to live with, whether the challenges have to do with our signs and symptoms or the lack of knowledge and acceptance we see from other people.

While managing gastroparesis is tricky, I'm sure our community has a ton of great coping techniques for dealing with this condition and any other health challenges that come our way.

For instance, I cope with gastroparesis by scouring Pinterest for fun recipes that won't cause my symptoms to flare. I also find it helpful to talk about my experiences with folks who know what it's like to live with gastroparesis and other conditions like it.

💚 So, fellow Mighty spoonies, how do you cope with gastroparesis? 💚

Maybe you have a go-to TV show or movie that makes you feel better. Or a book of puzzles you like to do to distract yourself. There could even be a blog you follow that helps you learn how to manage your symptoms.

Let us know in the comments below! 👇

#Gastroparesis #EhlersDanlosSyndrome #Diabetes #ParkinsonsDisease #GERD #Neuropathy #hypermobilityspectrumdisorder #CheckInWithMe