Autoimmune diseases can be tricky to navigate, especially when it comes to managing the consistently fluctuating or unpredictable symptoms they bring. (Don’t even get us started on how hard they can be to diagnose, too!)
In addition, some symptoms (or all of them, honestly) can heavily impact your productivity, mental health, and life as a whole.
What autoimmune symptoms do you find most challenging to manage and regulate? (Butterfly rash? Temperature regulation? Joint pain? Inflammation?)
📖 What to read more of what other Mighty members have mentioned? Check out this Mighty article by @erin-migdol here: themighty.com/topic/chronic-illness/autoimmune-disease-worst...
#AutoimmuneDisease #ChronicIllness #ChronicPain #MentalHealth #CheckInWithMe #Disability #RareDisease #ChronicFatigue #Migraine #Insomnia #Fibromyalgia #HashimotosThyroiditis #GravesDisease #RheumatoidArthritis #Lupus #MultipleSclerosis #DiabetesType2
True story… when I was fresh home from hospital, unwashed, unable to stand due to being chronically thyrotoxic, wearing PJs and a cancer cap to cover my hair loss, a visitor uttered these words to me like they think it’s some sort of compliment 🤦♀️
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
Sex and the City’s Carrie Bradshaw may have spent much of her time running around New York City in her Choos and Manolo Blahniks, but she also wisely once said “Maybe the best any of us can do is not to quit, play the hand we’ve been given, and accessorize the outfit we got.”
Taking these words of wisdom and applying them to my limited spoonie life: I’ve found that the best accessory to pyjamas and lounge wear, is socks.
I have fun socks. Socks with cats and dogs on the toes with which serve as playful, friendly greetings to front door visitors. Cutesy socks, put the doorstep world at ease.
Then there are my colour block socks that look just as good on their own or peaking out of a pair of high tops. Colour block socks need no explanation. They announce to the world with the same brazen hutzpah as Samantha Jones, “Hello. My name is fabulous.”
I have sparkly socks too. To misquote Charlotte York—before she became a Goldenblatt—these socks say “I’m not dead. Let’s Disco!” Unfortunately these aren’t the most practical of socks, so I wheel these out only on special occasions such as Christmas and New Year’s Eve.
Occasions that call for a little extra sock game.
I have no idea how to wash them so I’m going to step into the confessional box and pretend you can’t see me when I say this: I simply rinse them in cold water and air dry them for a few days, before nestling them in my sock drawer next to a bar of soap in the hope that the fresh soapy anti-miasma will do it’s thing.
As an aside: I’m happy to discover that there is an actual song called “You’re Dead. Let’s Disco!” which I am adding to my funeral playlist, because 1) I’m a control freak, 2) when you’ve been sick for over a decade, you tend to think about these things, and 3) I don’t trust my other half to get it right… some things never change, like my cynical Miranda Hobbes personality.
But back to socks. I also own the gold standard, the Manolos of the sock world if you will; the pure cashmere sock.
You know the kind. They adorn the feet of influencers lounging around their houses looking effortlessly chic clutching large glasses of red wine while daring to wear white jeans, while cute young offspring wander around wearing matching outfits. And there’s just enough mismatching design elements that you just know they and their interior decorators put many design hours into making it look like this too was effortlessly thrown together so that everything—chicly of course—oozes with just the right amount of enthusiasm “Look. I’m not that different from you. If you buy these things tagged in my post that have been gifted to me, you too can look as effortlessly cool and chic as I do.” Basically what former socialite Laney Berlin from the baby shower episode would be doing if she was on Instagram.
Alas, like the mythic Mary Jane Manolos that Carrie found in the Vogue closet that were a size too small, I too discovered that washable cashmere socks are an urban sock myth. After ever so gently coaxing them into a lingerie wash bag—and putting them on a cold wash as instructed—they still emerged a size smaller, covered in a pox of pilled wool.
The irony was not lost on me: my costly cashmere socks as with all my other expensive endeavours to improve my health—like supplements, infrared sauna blankets, treatments, and that one time I built a four cornered shrine dedicated to Manon, willing him to take my ailments and inner scars, had failed miserably. Okay, I may have made up the Manon part, but the rest is all true.
Sadomasochistic that I am, I still have some cashmere socks lined up in my sock drawer like little ladies in waiting in anticipation of the day a spoonie royal like Lady Gaga, Sia, or Venus Williams should decide to pay me a visit, I will be suitably prepared.
For as Carrie Bradshaw never said, but might have if she were chronically ill, “When your life is at a standstill your sock game benefits.”
✨Good night✨ 😴🌙💤
My Best Friend and I broke up.
Honestly I have seen this coming for a while and I am hurting a lot right now in a way I haven't in a LONG time.
I am honestly at the phase of a break up where I want to go back to the person who savagely destroyed me and apologize to them for hurting me as badly as they did and for destroying me time and time again until I snapped and hurt them.
You know. "I am so sorry that I snapped after all the times you broke our plans with lame excuses, then did something on the exact same day you could not do things with me, with someone else.
I am so sorry that time and time again, you had no money to pay your phone bill, so I paid it, couldn't get groceries so I bought them, couldn't buy gas so I bought it, couldn't pay rent so I paid it, then you got time off work for a festival or a concert after breaking plans with me saying you needed to work for diapers.
I am so sorry that it hurt me when I paid your phone bill when you were unemployed and you ghosted me when I said I really missed you and needed to spend time with you, but I could see you posting on Facebook at the exact same time that you were not talking to me.
I'm sorry it hurt that my husband and I drove 246 miles at 4am to get you and your kids out of an abusive home, drive you home, and put you up at our house, get you housing, pay for your gas, get you set up in town, and you told me I am petty, abusive, bitter, angry and hurt when you canceled multiple plans with me over the last year, then did things with other people.
I am sorry I was so hurt that I was stupid in my BPD/BiPolar brain reaction and Vaguebooked and forced you to tell me how much of a horrible person I am.
I am sorry that I am hurt because I expected more from a best friend.
I am sorry I am hurt because I know your favorite animal, know your exact top 3 fictional characters of that favorite animal, and did make sure that after a really bad month at work during covid 19 those 3 stuffies were on your frontstep waiting for you after work, and you cannot name mine, you could not name mine ever.
Worst of all I am sorry I am hurt because I want to make amends to you because you hurt me. You broke me, you made me feel like I was less. I deserved less. I was ugly and worthless. I felt like you did not want me in your life. I want to apologize to you for you making me feel that way.
And I hate myself for it.
Because it means that this is all because of the abuse that you have been doing to me for years. I hate that you will never apologize for making me hurt. And I just want to tell you how sorry I am."
How do people deal with this?
How do you deal with realizing you were in an abusive friendship?