This is from a Facebook Post a couple weeks ago. It helped some people. So I am posting it here:
I am autistic. I also have an autonomic nervous system condition. I didn’t know these two facts until I was over the age of 40. I spent decades in search of answers. For years, I thought everyone felt the way I felt inside my body and mind.
I didn’t realize that not everyone has to find reserves of energy to get up from a seated position. Not everyone has days that they truly cannot function. Not everyone gets tired waiting in a line.
It took me the majority of my lived-life to realize why it’s tiring to lift my hands over my shoulders when I shower (blood not being able to flow upward correctly). A lifetime to understand why it takes energy to bend over (blood rushing to head). I keep learning why I feel the way I feel.
Dozens of medical professionals failed to diagnosis both my autism and dysautonomia. Some treated me with medicines that did more harm than good, based on wrong diagnosis, e.g., anti-malaria drugs, thyroid hormones.
In childhood, I had severe “growing pains” in my legs and arms that woke me up screaming. I thought everyone had those. Charlie Horses that left me drenched in tears. Unexplainable bowel and stomach pain. Frequent visits to the bathrooms, with excuses made to my peers.
I was officially classified legally disabled over 19 years ago, based on a wrong diagnosis.
It took 13 of those 19 years to finally figure out what was going on through a tilt-table test. A test I demanded. I diagnosed myself. No doctor was able to help. A specialist finally confirmed the dysautonomia/autonomic system condition.
After 5 ER visits in 2 months, and admission to the hospital for a week, doctors still misdiagnosed me, two professionals claiming I was inventing my symptoms; somehow I was deemed capable of making my resting pulse rise to 160 upon standing and quickly go back down when I rested flat on my back. I was willing the condition.
One ER doctor tried to convince me it was just coincidence that all my ailments were happening at once, and I was trying to find connections that were not there. The twitch in my eye from low magnesium, loss of appetite, elevated heart rate, etc. These were all coincidentally happening together. I had to stop over-thinking it.
One hospital doctor literally laughed in my face, and claimed arrogantly that POTS was too rare of a condition, and he’d never seen it, and that he’d called a specialist and there was no way I had it.
Another hospital doc said it was an undetermined neuropathy condition that could worsen.
Another said it was the failsafe: fibromyalgia.
Like me, many folks on the autism spectrum have EDS (Ehlers’s Danlos Syndrome) or joint hyper-mobility syndrome, and because of this, some have POTS or a similar condition.
My specialist originally said I had a condition that was a cousin to POTS because my blood pressure didn’t always go down. Literature states in 1/3 cases blood pressure actually rises in POTS patients. Even the specialist doesn’t (or didn’t) know the details of the condition.
Interestingly, POTS traits mirror some autistic characteristics, such as sensitivity to environment and sensory overload.
EDS and POTS makes me in a constant state of anxiety — my body tells me chemically to be on high alert. It doesn’t know any better. Anxiety-wise, my “spoons” are used up very fast.
Like many with chronic health conditions, any ailment, stress, sleep upset, and travel makes the symptoms flare up.
Hormone fluctuations (puberty, peri-menopause, cycle) exasperate symptoms. Food sensitivities. Allergies. Too little salt or too much salt. Too little fluid, too much fluid. Everything has potential to trigger reaction.
I.V. treatment can bring some relief and mega-doses of sports drink or coconut water can assist. All of my nervous system/ autonomic system is affected, including sweat glands and bladder. Bladder urgency and pain upon urinating, protein/blood in urine, mirror infections that are not really there. Antibiotics that shouldn’t be given.
Standing is hard. Sitting upright for too long leaves me winded.
Things are backward. And sometimes there is no relief. My autonomic condition/dysautonomia makes me allergic to allergy pills, causes anxiety pills to make me anxious, and anti-depressants to make me depressed. Backward.
Benadryl can lower my blood pressure to dangerous levels. Wine calms my nerves, but leaves me with stomach cramps. One Tylenol or Motrin relieves my headache, but leaves me with 48 hours of stomach ache. My whole system is truly over-sensitive.
Things take longer to filter through my body. Similar to how I process my emotions, what I put in my body, often sits there longer than is best for me.
Unable to rely on traditional prescription medication and over the counter aid, I’ve utilized alternative medicines to help my pain, such as acupuncture, massage, and reflexology. All not covered by most medical insurance. All expensive. My money has been continuously spent on supplements, medical tests, doctor visits, and alternative treatments. I have a far infrared sauna. Something I have to fight my fatigue to use. I am fortunate to be able to afford alternatives.
My body has a hard time keeping stored ferritin (iron) and magnesium and sodium. My potassium goes out of wack. The list of what I am allergic to on the nurse practitioner’s computer makes me appear a peculiar duck. When I answer ‘none,’ to the question ‘what medications are you on,’ in response, I typically get a quizzical, silent pause.
I know many with health conditions. Most the people I know suffer with some type of chronic physical pain (coupled with psychological pain.) I don’t feel sorry for myself. I don’t think I have it much worse off than most of the population — particularly autistic women.
I have friends with life-threatening conditions, with terminal cancer, with ailments that require constant medication. I have relatives who have suffered physically far worse than me … far worse than I can imagine. There is no ‘poor me,’ tone in this. Only an exhausted me.
Lately, the neuropathy is affecting my ability to walk or stand. My legs ache more than normal. The EDS is adding to arthritis in some joints. The dysautonomia to the neuropathy. As I age, this will only worsen. That’s not pessimism. It’s reality. And it’s something I accept. I joke about my virtual reality body suit. Maybe I’ll live to see it and wear it!
I feel thankful for the loved ones in my life and friends. Sharing this doesn’t discount that. Something about our society teaches us that sharing about health is whining, or complaining, or focusing on negative. I’m only focusing on what is. And sometimes ‘what is’ sucks. And that is okay.
I might need a cane or a portable wheelchair. A fact David and I have been considering since February of this year. David pushed me through the airports and a museum in a borrowed wheelchair. It was such a relief to alleviate my feet pain and constant fatigue.
Some days I can walk an hour. Some days I can walk a block. Some days I only walk to the bathroom and back. Some day soon, I’ll need more assistance.
I gained a new form of empathy for individuals who utilize a wheelchair for support. The looks from strangers were across the board, from pity to curiosity. Some looks seemed to indicate I was somehow less than. I wasn’t sure how to answer the questionable looks. It’s exhausting watching ‘them’ watch. I suppose that gets easier with practice and time.
Lately, walking to the kitchen and back is exhausting. I have to motivate myself to get up from the couch and plug in my computer cord. I have to explain to my work why a desktop computer is out of the question. I have to apologize for no visual on video calls, as I was too tired to brush my hair.
I remind myself that this too will pass. That I have good days and bad days. Easier months and harder months. That the global crisis has ill-afforded me too much time to be in my own head and contemplate my aches and pains.
I can tolerate the headaches, and shortness of breath, and digestion issues (heartburn, bloating, fast or slow digestion). I understand my dysautonomia and how systems that operate naturally and normally in most of the population, don’t for me.
It is linked to higher rates of hormonal ailments such as my severe endometriosis, fibroids, and chocolate cysts.
The excess adrenaline circulating in me from obvious autonomic system ‘mis-wiring’ and hyper alert fight-or-flight mode, means I have nightmares and stress dreams 99% of the time, and usually 4 or 5 a night. Sleep is undoubtedly affected. I wake up from some limb or another ‘falling asleep.’ Ironically, a part of me is sleeping, at least!
Cognitive functioning is affected everyday. Somedays more than others. Perhaps the way I am made adds to my dyslexia and dyspraxia, and behaviors that mimic OCD and ADHD traits.
I can handle this. But I sometimes worry about the quality of my life. And I fret about being a burden. David and my three sons give me a purpose. As does the autism community. They were/are my lifesaver.
Life with chronic pain is a lived-life, though. The ‘unknowns’ are hard on my autistic mind. Not knowing what part of me won’t function today. Last week it’s the bladder. This week stomach upset. It gets old, these unpredictable, non-patterns.
I am a problem seeker and pattern finder. And the answer to my wellness riddle evade me. I grow exhausted from trying. Sometimes pizza and Netflix binging are my refuge. Sometimes a deep nap.
I don’t regret my lot in life, nor wish life differently. Being ‘ill’ enabled me to be a stay-at-home mother. Being ‘ill’ led me to a lot of life choices that were solid choices. I don’t abide by the verbiage that at least you have your health. Many of us don’t. And I can still have a life. There are some things that are more important to me than health, like compassion, love, and kindness. I’d rather be this, than healthy and mean. Or unlovable.
I have gained enormous patience through these trials; I have learned keen medical knowledge; I have been gifted bountiful empathy for those with invisible pain and suffering. I have been blessed with endurance, resilience, and self-compassion. I have learned to forgive myself for self-shaming and ‘not enough-ness.’ I continue to grow.
My dear Aunt Cesca, who once suffered from chronic pain, once said to me, over 20 years ago: “By the time you’re in your 50s and 60s, you’ll feel less alone in this. By then your friends will begin complaining about their aches and pains from getting older. Like the bad knee or sore feet. You’ll be able to laugh to yourself then. Thinking how much you’ve already felt.” We have a ‘Cesca Room’ in our house, in honor of my beloved aunt. I miss her.
Life is suffering. And, in this, I seek refuge.
In the suffering, I am able to appreciate the abundance of life around me and to appreciate the so-called ‘small things.’ When your health feels beyond your control, the ‘small stuff’ doesn’t matter as much. One gains a new perspective. A new life, in a sense. I’ve gained much gratitude. I’ve gained tremendous strength.
As my chiropractor concurs, once you become familiar and friendly with your pain, it becomes less painful. It’s amazing what one can tolerate.
I am thankful the nerve pain in my face is, for the most part, manageable without pain meds. I am thankful I have gained intuitive abilities to evaluate what is best for me in the moment. I am thankful for my fingers that type — as they ache when I hold a pen. I am thankful for the abundance of nature outside my window. I am thankful that I am not alone in this.
6 thoughts on “Growing Pains. (Boring Health Stuff that Might Help Someone)”
hello Sam.we have not spoken for a while .very well done for talking . will help others .people never see the every day effects .there views/judgements are very Snotty Nosed .i take part in a lot lot research ..
i am co- Author of a book .JUST PUBLISHED ..book is about .Disability and Sex .can give you a Link
i am from England
I swear we are odd twins. You just described my life in eery accuracy – except I have been diagnosed with the following;
– chronic anemia
– low ferritin ( currently a 3)
– thyroid nodules
– anxiety ( go figure!;)
– higher blood pressure ( not enough to do things thankfully!)
I go to physio therapy and they keep discharging me only to have me back in a few months! Today I just got back from physiotherapy and she told me that my whole abdomen and thighs were inflamed. That it’s any wonder I can even twist. And I have to do a bunch of exercises to get back on track but that seems to be my life… A lot of what you said I could relate to like having a hard time just getting up to get the computer cord or sitting for longer periods or standing feels like torture. I wonder if it’s POTS? I probably will never know. Sometimes I wish it was one clear cut thing I could fix. My friend has EDS but we have clearer differences in symptoms. Last week I went to the dr for suspected bladder and it’s terrible pain but no infection!
Thank you for making me feel less alone. I’d happily chat to you about symptoms lol – a pastime for sure! I like figuring out causes too!
I hope you feel better soon 🙂
I have been diagnosed with all of those you listed, every single one, except not sure what IV, Glycogen storage? and haven’t had nodules. LOL but they treated me for thyroid at one point. Your list is about the same as mine,… I think mine’s longer. hahaha
Lol why do we collect diagnosis ?!? Lol I meant asthma weird with IV – dunno how that happened but I don’t have asthma even though I’ve had double pneumonia several times without fevers or couching! Oh and mono and that cause (? I forget when it’s chronic) plus Mthfr ( bit only suspected ) Which one do you think gives you the best treatment in medical systems? I’m never sure which ones to bring up… hmmmmm 😊♥️I love that we are a pair this way 😂 I feel more valid !:)
POTS 🙂 and when my minerals are too low gets people’s attention lol