Toot Your Horn Tuesday is a place where any blogger who either has a disability or writes on topics of health and wellness for people with chronic conditions can come and share their best article each month with the Zebra Pit Community. Ideally it would be something that might interest and enrich our readers; Have a tutorial on meditation? Did you demo a product on pain relief? Wrote an article on 12 ways to achieve better sleep? Shared your story about getting a diagnosis? Created some tips on how to deal with difficult doctors? Waxed poetic over the joys of adult coloring as a way to de-stress? Share it here!
I usually reblog a few of my favorite contributions throughout the following month to ensure my readers see it and I think people are finding it’s a great way to meet and interact with other bloggers, so consider joining in on this networking opportunity. If you’re enjoying these posts, please share them and help their popularity grow. If contributions don’t pick up within a few more months, I may not continue the program.
Here are the rules:
The post you share doesn’t have to be on a disability health or wellness topic. If it isn’t, you must be the caregiver for, or a person affected by disability and you must occasionally use your blog to promote visibility and acceptance of disabilities.
Only one post share per blog/blogger per month is allowed.
You must like and follow the zebrapit.com blog to participate (liking us on social media is great, but you must follow the actual page). If you aren’t a follower, your comment will not be approved.
Blog links should be shared to Toot Your Horn Tuesday specified pages ONLY and must match the month of publication (October TYHT should only have October blog posts submitted), but you can post on any day or time, NOT just the Tuesday the post comes out!
Commenting will be shut down on each post after two months.
These rules are subject to change at the discretion of the editors for the duration of the program.
To participate, provide a description of your blog post along with a link in the comments section at the BOTTOM of this post, which will remain open for two months. To find the comments section, scroll all the way to the bottom past the Related Posts section. Once it is reviewed for suitability, it will be posted. I will post a new Big Blog Party post on the LAST TUESDAY of each month so be sure to set your calendars to return next month and share this post to spread the word with your community and blogger friends so they can participate, too! I look forward to getting to know you and your work better! If you have any problem submitting your entry, contact us.
Please keep the conversation going! Take the time to like and comment on the blogs you enjoyed reading so our guest bloggers know you appreciate their work and will keep coming back to contribute to our knowledge base! I may use your reactions to choose certain articles to reblog periodically and to build more on the types of topics covered at the Zebra Pit as well.
It’s World Suicide Prevention Day. I’m not going to pretend that I have all the answers or that I can provide some sort of step by step guide of what you should do if you’re feeling suicidal. There are a million of those out there and I don’t know how useful they are, to be perfectly and perhaps shockingly frank. What I can do is share the story of the year I struggled regularly with suicidal ideations, made a plan right down to the method of my suicide, planning my own funeral arrangements, and a manual on how to take care of everything I would be leaving him to deal with after my death. Hopefully I’ll also be able to shed a little light on how I survived it and why I’m thankful everyday that I’m here to live another day instead of carrying out those plans.
It was 2013. I struggled almost daily with suicidal thoughts for around a year. I had just severed my relationships with my remaining family for their lack of support and understanding about my illnesses. I had been forced to give up work, my health The continued to spiral and no one could tell me what was wrong with me. I suffered daily with migraines, severe brain fog and any number of odd symptoms that had me barely functioning. I kept running life threatening infections. I was forced to give up all of my pets because I could no longer care for them and we were living in a pit of a mobile home where I was convinced we were going to freeze to death if we were forced to live there one more winter and it felt like it was my fault. We were in the process of filing for bankruptcy, my husband had given up his job to take care of me and was then forced to work at a convenience store 50 hours a week on second shift and was never around after the money ran out. By this time, most of my friends had already abandoned me and I felt completely hopeless. I didn’t know if I was dying or if I was meant to linger on in agony for decades, but I knew I couldn’t face the possibility of the latter, and felt like I was running out of options. Suicide began to feel like the only way out.
On top of that, everything going on with my family and my health had started me into a cycle of nightmares and PTSD flashbacks that I could rarely escape. I’ve never been properly tested, but I’m pretty sure I have androgenic POTS, meaning that when I have an episode or flare up, I get epinephrine and adrenaline dumped into my system. This puts me into a panic attack every time, triggering PTSD episodes. It also caused terrible insomnia, in addition to the painsomnia I was often fighting. Sleep was very rare and precious indeed, but to have to deal with repeated scenes of childhood abuse, bullying and rape, it just completely broke me. Tactics I’d used earlier in life to control my PTSD episodes no longer had any effect, because the triggers were now chemical and I had no control.
I started to squirrel away the money to buy a gun (even though I couldn’t even afford my medications) and settle my affairs, writing up instructions on what to do upon my passing for my husband, since I’ve always been the one to take care of the household affairs. I had no tears left for myself or anyone else. I was truly convinced I, and everyone who ever knew me, would be better off if I were dead. I was consumed by my uselessness, obsessed with the fact that I could no longer work and that my value was tied entirely to that, having been rejected for every other reason a person could have value. I could no longer create poetry or short stories. My brain didn’t work that way anymore. I couldn’t conceive a child because of PCOS or endometriosis or my health or the perfect storm of all those reasons, no one really knew. I couldn’t even care for myself properly. What good could I possibly be to the world? I couldn’t even be a proper wife or friend.
I wasn’t exactly rational at the time. I was still writing poetry, not to publish, but to try to funnel some of the rage and desperation I felt. As you can tell from the poems, written over the entire year, I was stuck on revenge and suicide fantasies both, which combined to create some pretty wacky, morbid, startling scenarios. The parts I relished the most (the discovery of my body) are often the parts I left out, because the truth is the family members whose living rooms and private spaces I chose in which to off myself are all people who would be more bothered by the mess I left than me dying, and I’m just not that good at lying to myself. I had no intention on acting on any of the things in these poems. They were an outlet, a way to get the emotion behind the actions out in a safe and completely private way.
Holding on and Letting go
With the first signs of trouble, you drifted in with the high tide on your brightly colored boogie boards, left me drowning in ocean swill of sickness, anger, self loathing. You mistook my S-O-S for ransom note, deemed the price too dear. Now I tread these dangerous waters alone, no raft to rest my weary bones. How much easier it seemed on the other side, this letting go. If only I a bullet for my rusty gun.
Head in the oven, like Sylvia Plath? Poets, both though she far cleverer than I. To simply fall asleep and never wake sounds so sweet, so traitorous a lie. Come Sylvia, lie beside me, read me charmed lines predicting our deaths; you and I and sweet misery staining our cheeks. Until we sleep our poetic deaths.
Death’s Thesis Statement
I don’t want to die weak like a “woman,” pills piled in the back of my throat, the sweet lustful sally of unconsciousness. No, I want to go out with a bang. Not in the heart; a bullet through the brain, bright blast of crimson spray from the back of the head, visceral paint on a pristine wall. I want the violence of it all. Perfect punctuation for this life’s sentence.
Beauty on a Trailer Park Lawn
Ice falls from the stars, crystalline tears captured in monument. Emerald green refracts beneath their surface here, pallor of death twinkling just around the stairs, where once a lawn mower was kept. We dance upon the ice, death and I, knowing the danger. The tinkling of sweeping ice our music, the time we are keeping. The bones, lovely flesh, they are weeping. A crimson fountain completes the scene. We freeze lockstep. I always wanted to be statuesque.
If I Die as You Died, Will I Join You?
The Ohio has frozen and my car wants to go skating upon the ice like a dancer, careening and curving until the great water takes her, defeating the ice like a great barge cutting through with its hull. Thirty-two degrees and I won’t struggle long, feel the pain flag and wane, the ice penetrate skin, bone and vein. I never wanted a coffin, but if have one I must, the car that took me 150,000 miles will do me just.
I could steal into his home. Break a lock and load a gun. Sit in his favorite comfy chair, pour a Jameson’s or have a beer. I could roll a joint or toke a bowl, peruse a mag or ogle some porn. When I’ve had my fill, I’ll raise his revolver to my ear. I always told him guns in the home were dangerous.
For you, I would paint a picture in blood. A Picasso representation of me and you would know exactly what it means because you are me, raw in your pain, victim to your disease. I would die by inches, from a million cuts made in the construction of this picture and your house would be bathed in the blood of the million cuts, the million times you have cut me with your rejection. You would decipher the layers of my blood on the canvas of your wall, the faint shades from wrist, the dark heavy heart blood, feel the years of silence in the curve and weft of each stroke, intuit the retribution paid for leaving you, for saying I do and not really meaning ‘for sickness and in health,’ for going when the going got too tough. Your wife would view it as a murder scene, my body a trophy left at your long slender toes by an admirer; you in the role of Jodie Foster. She wouldn’t be wrong, but she wouldn’t be right, either. I wanted you to care. I wanted you to love me, if from a distance. I wanted you to say that what we once were together as one meant I still mattered to you apart, if in only some small way; a phone call once a year, the occasional text message, an email. I wanted to die somewhere other than the tiny trailer where my husband still has to live. I wanted someone other than him to mourn me. Remember me. Remember me then. Remember me now. Remember who I became, this warped image of who I am; because in all my perversion, I still count.
Damn you all. I still count.
Weekend at Daddies
(A dark comedy starring Capricious Lestrange)
After the deed is done, they’ll prop me before the TV, happy not to listen to the nonsensical chatter I picked up from my unfortunate edu-ma-cation, the awkward questions about their health or retirement or politic or Cherokee grandmother, sliding in their not-too-subtle knife blades during the autopsy of my youth. They’ll insist on dragging my bloated body to the mini-van, buckling me in for a trip to Wally-world only to deny me purchase. This will be the grand trip, topped off with a meal at Sonny’s barbeque. Dad will polish off our buy one get one meals, napkin conveniently erasing all guilt. The remaining visit filled with home improvement projects; no time like a visit from the daughter he abandoned at four to replace the carpet on the bedroom floors. ‘No, no. No need to help. I insist. No, ladies relax.’
Watch Facebook for your next vacation. Jump on a plane and catch a cab to the house I’ve only seen in pictures. Creep over crabgrass to the lanai and slip into the hot tub you disdained because it was not a pool. Think of how you left us to find you overdosed so many years ago and I am the last to even the score. Slit arms, thighs with straight razor in warm puckered fingers. Watch the foam turn red: The salute you and your state deserve.
Tell me why I shouldn’t die, leave you behind to learn again the language of happiness. It’s not like I’m asking you to fly, perform an appendectomy, speak French. It wasn’t so very long ago we laughed beneath the sheets, the swaying trees, the winking gaze of an evening sky. Get on that bicycle, my love. Ride.
Of course if you have someone in your life you can turn to at the moment you’re dealing with these things, that’s best and of course I was doing plenty of talking with my husband at the time. Most articles on suicide prevention say that dwelling on these things is exactly the wrong strategy, and they might count these poems as just that, but if you’re an emotive person who needs to get these things out with nowhere to turn, writing might be a good option for you. I’m of the opinion that there’s just no one size fits all model.
I wasn’t able to find a counselor at the time. Money was at a premium. I wasn’t suicidal enough to want to be locked up and I can pretty much guarantee that locking me up would only make me more suicidal, not less. So I kept writing poems, kept journaling, kept reading articles on mental health and doing my best to begin researching about my own health to begin trying to figure out what was wrong with me so I could get some relief. I discovered dysautonomia and talked to my doctor. I got some ORS and medications and slowly but surely got more regular control over my POTS episodes and insomnia. I started taking antioxidants and herbal sleep aids and supplementing some of my vitamin and mineral deficiencies. Each thing helped just a little more until I found fasciablasting and more supplements and the proper diagnosis and got back to mostly being me and realizing that I could have a life that wasn’t plagued by constant pain and untenable symptoms. Then I came to the realization that I had to allow myself to accept and mourn all those things I had lost before I would ever truly be able to move on and forgive myself for becoming sick and letting myself down. Since that time, the progress with my mental health has been many more steps forward than those I take backward.
I’m quite glad I battled those demons and won, as I rather like my life, multiple chronic illnesses and PTSD be damned. Yes, I still suffer some days, but I rarely ever experience the kind of suffering I once did. I finally found valid diagnoses and doctors and treatments that could help. We survived bankruptcy, we moved, we’ve welcomed a new pet into our lives and after 14 years together, we’re still very much in love. My mind works better than it has in years and my health continues to improve. I produce writing that I can be proud of again, including this blog, but even when I can’t, I have learned how to be okay with that and accept that it doesn’t make me less. I have much to live for as far as I’m concerned and no one else’s vote counts.
Even when you can’t see anything positive in your life, when all seems hopeless and change impossible, it’s simply because you don’t have the perspective necessary. You never know what it may take to change that perspective, but eventually perspective always shifts. Change is one of the laws of nature. Nothing can ever remain constant. We need only survive something for a finite period of time. If you’re struggling to maintain that hope, remember this. It may not seem like much. But sometimes it’s all we’ve got.
Four of my poems about what it’s like to experience chronic illness, pain or particular symptoms are being displayed on The Unchargeables right now and with permisson, I have reprinted them here. I don’t usually discuss the meaning behind my poems, but I wanted to offer a little explanation of each for those who aren’t real familiar with poetry so that they might feel a little more accessible. I write poems like this to help me process the grief surrounding my disability and everything I have lost, but I also write them in the hopes that it will help others understand what it is those of us with Ehlers-Danlos Syndrome and similar spoonie conditions experience and so that others with these conditions will read them and know they are not alone in feeling these things, too.
If you’re a fairly savvy poetry reader already or just like word games, you may want to read them without reading the descriptions below first. Part of why I love poetry is because ultimately, they’re word puzzles and I love the feeling of success I have when figuring them out. These aren’t particularly clever so most should be able to get them, but a lot of people feel intimidated by poetry and we are a community that suffers from brain fog by and large, so I decided to include descriptions for those who aren’t up to the challenge today or simply aren’t into it.
By Capricious Lestrange
That’s what they call me, but it was never my mind that changed all the time; left my aspirations rotting on the vine. It’s easy to dream. Actualization impossible when energy wanes more than waxes and body break better than breathes. Dreams come to die in bones like these.
“Capricious,” is a prose poem, which means it’s written in paragraph form rather than in verse. It’s about reconciling what the mind wants with what the body can handle and how the world perceives these adaptations in someone with invisible illness. Note there’s a typo in this poem, unfortunately. The next to the last line should say “…body breaks better than breathes.” I talk a bit about why I adopted the name Capricious Lestrange in my bio.
By Capricious Lestrange
Headaches arrive daily
like the mail or a horoscope,
never quite the same
Some a wire wrapped cap
a size too small,
lurkers that cause little harm
though they persist.
Some are nebulous yet fierce,
Stomach churning, full of lust.
Blanket my brain in chains
Of iron and rust.
Some hover above one eye
bass speaker, magnifying glass,
A tip tap bombast
of cranial persecution.
Others steal sight, blinding
gems of marquis and trilliant cut,
dancing girls in tight formation
among the whorls and fuzz.
“Head Pain” describes the different types of headaches I, and many people with EDS, live with on a near daily basis. For many years, headache free days were a true novelty for me.
By Capricious Lestrange
It fills every thought the way sand invades every crevice. There’s no leaving it behind or brushing it off and even days later, you still find traces of it, here or there; a haunting of sorts. Before you know it, agony is always tagging along. You take her with you shopping, to parties, your job. Your friends are not impressed. Agony has made you dull and they’re wary of what She wants. To be safe, they move away, hoping you might wise up and dump her. You try to pay her off, but Agony cannot be bought. Before you know it, your Facebook status reads “In a relationship with Agony” and your friends congratulate you and sprinkle you with tiny hearts. One by one they drift away, Agony your only counterpart.
The key to understanding “Agony” is the personification of chronic illness. She follows you everywhere you go, sticking her big nose in every last detail of your life, your interpersonal relationships, your professional life. That agony is a real bitch.
By Capricious Lestrange
You are the boundaries I never wanted drawn.
Fault lines shifting in quicksand, elusive as breath.
Thirsty as a lion in drought, you stalk these dry bones
for a chance to suck the marrow.
Solid earth beneath my feet? Sweet, tender grass
tickling my toes and sunshine pierces the veil, imparting
her promising warmth. I sit for a meal of dandelion wine
and greens at her table, arrange weeds for my bed.
Dream of open prairies until claws hook in flesh—
Jaws sinking into bone. Fault lines shift, I never wanted drawn.
“Genetic Stalker” is a metaphor for the beauty and bliss of brief reprieves from symptoms and illness we spoonies occasionally and seemingly miraculously get, only to be plunged back into the cycle of constant illness and how traumatic that can feel, both physically and emotionally.
When deciding to attend my first concert since 2010 I was excited, but wary. Music has always been a fundamental part of my life and mental well being. Being disconnected from music while dealing with too many neurological symptoms to tolerate it was a special sort of hell for me. Even once I was well enough to tolerate listening to some music at home, live music seemed like an assault on the senses and something I would never be able to enjoy again. I knew from a couple of attempts at seeing local bands at outdoor events that this activity wiped me out like no other, even when I just sat and listened. When I began researching mast cell activation syndrome (MCAS), I came to understand this might be due to the way my mast cells were reacting to vibration, but I decided to take my chances anyway. Today, I want to share with you how that experience went, how I prepared for it and what I might do differently next time to help you get the most out of your concert experience.
I’ve been doing better than I have been in a long time and an outing of several hours where I can both sit and stand is certainly manageable despite having multiple disabling chronic illnesses. With the help of medical procedures, diet, exercise, supplementation and the medications I take, my fatigue levels are much lower and many of the symptoms that used to be a constant in my life; migraines, dizziness, weakness, vomiting, chronic pain and brain fog are mostly well controlled and only occasional visitors now.
Despite all of this improvement, I’m having a hard time controlling my MCAD reactions and symptoms (which I assume is probably MCAS since it fits well with my EDS and POTS dx, but I don’t begin testing until August 29 for diagnosis). I’ve had these problems for years, but in much smaller scale. That is until this spring when I began reacting as if I were allergic to almost everything in the known universe.
I’ve been on a mast cell mediator called quercetin for about 3 months now. The longer I take it, the more my symptoms improve. I still cannot leave my house without wearing a mask and my diet is very restrictive, but my reactions aren’t quite as severe. I no longer have to take Benadryl regularly, instead reserving it as the rescue med it should be unless I know I’m going to be exposed ahead of time. It seems like each week there’s a bit of improvement in how I feel overall and the amount of time it takes me to recover from exposures. Going to a concert on July 31 didn’t seem like that big of a risk. Luckily I turned out to be right, but I did still have a reaction and I’m at a loss to say it was caused by anything other than the vibration I experienced.
To prepare for the concert, I took benadryl, along with extra zyrtec, flonase and ketotifen eye drops. We got lucky and pollen counts were nil due to regional rainstorms so I didn’t have to wear my mask on the drive from Northern Kentucky to Indianapolis. I put my mask on as soon as we arrived at the venue, as I knew I would be exposed to a variety of colognes, body products and cleaning agents. Without a doubt, I made sure I was well protected. Since I was a little worried about the sound levels and getting a migraine, I took ear plugs. I wore them through the opening act (and frankly would have appreciated better ones to drown them out), but the theatre kept the sound levels at acceptable levels and I was able to remove them for the main attraction.
Since I still react to food so easily and can no longer process carbohydrates or fatty meats due to GP, we no longer attempt to eat out unless there’s absolutely no other choice and we never combine it with other activities if at all possible. The potential to ruin things with a bad meal is just too high. We ate an early dinner before leaving and I packed snacks from home, consisting only of things that I eat every day. Since I am a POTSie, I also packed Oral Rehydration Salts and dressed in layers, just in case I started having issues with blood pressure fluctuations and dizziness or difficulty regulating my temperature and made sure I was well hydrated.
As usual, I stocked my traveling pill case to ensure I had everything I needed; benadryl and asthma rescue meds, pain relievers and muscle relaxers, extra midodrine just in case the ORS isn’t enough, triptans for migraines and an antiemetic. I store all of these things, along with my ORS, mask, tissues, eye drops and nasal sprays in an over the shoulder purse or body bag that never leaves my person.
Even though it was a 2.5 hour drive and we knew the concert would go until 10 or 11, we opted not to stay overnight, because this simply presented too many complications for me at this point. I was worried about reacting to everything from the hotel linens to being able to get safe foods to eat. I stand by this decision, as I believe it helped me to keep my total exposure down to whatever got through my vogmask (which is very, very little) and the vibration I experienced from the loud music.
I’m sure 5 hours of driving contributed to my fatigue, but two 2.5 hour drives with a concert in between wasn’t overly taxing. We took a break going in each direction and made sure we stayed hydrated. It may seem strange, but I opted to drive on the way there. I feel better when I’m the driver in a car rather than the passenger. This doesn’t make sense when considering that mental exertion can be just as taxing to an EDS body as physical exertion, but I believe it works better for me because keeping my arms on the steering wheel actually helps me to maintain better posture than I would sitting in the driver’s seat playing on my cell phone or whatever. I always find myself uncomfortable, shifting to find a better position and putting my feet up on the dashboard, which sometimes hyper-extends my knees and hurts my ankles, even if it does assuage my POTSie symptoms. No matter how I try, I always come out of the passenger experience in more pain and fatigue than I do when driving.
We gave ourselves plenty of extra time to get there, both in case traffic was bad and so I didn’t feel stressed out about making it on time. As a trifecta zebra, stress will put me into a flare faster than almost anything. Feeling in control in the driver’s position with plenty of extra time really helps to dissipate those tensions.
Arriving at the Concert
We got there about 45 minutes before the concert started and it was perfect. We were able to get good parking in a lot right across the street and we had plenty of time to gather our things and calm any butterflies. My husband and I both have anxiety about crowds these days, so we like to ease into these things. I took a dose of Benadryl just before going in and chugged down a little water to ensure I was well hydrated before snapping a couple of pics and heading inside.
I was distracted by the crowds and forgot to put on my mask until after we were already inside and I got a big whiff of cologne. I ran from the cloud and donned my mask. We got a drink and sat in our seats, getting acclimated to our surroundings and admired the beautiful old theatre. I put in my ear plugs and prepared for the opening act. We were both freezing and I was grateful for my shrug.
Everyone remained in their seats for the opening act, so I took the time to relax. Once Erasure came on stage, everyone stood up and I did, too. I was a little worried about spending too much time on my feet, but I felt pretty comfortable with it and wanted to see them perform. Erasure is a group I’d wanted to see since I was 15 years old and I fully intended to enjoy it. I removed one ear plug and was pleased to find that the music wasn’t overwhelming at all, so I stuck my ear plugs in my pocket. Soon my shrug came off, as I started moving to the music and sweating.
After a while, I was all out dancing. I felt great and I could hardly help myself. The energy was amazing and I really couldn’t have asked for a better concert to start with. I could tell all my exercising had really paid off. I felt strong and in control of my movements. Still, I was careful not to bounce on my feet or jump around for fear of jamming or dislocating something and ruining things.
We sat when we needed a break and rejoined the reveling when we were ready. I felt great and I think I actually spent more time on my feet than my husband did. I sang and shouted through my mask and laughed when people stared at me and my mask like I must be crazy. I didn’t care what anyone thought. It was my night and no one and nothing was going to ruin it. I cried for the joy of it all.
After the Concert
On the way home, I still felt great, though the fatigue was starting to catch up to me. I let my husband drive home so I could nurse my growing pain and eat something. We talked about the concert, listened to music and sang too loud all the way home. Neither of us suffered any hearing loss and we both felt pretty good.
I had a terrible time sleeping when we got home around 1 am and it was well past 4 in the morning before I could sleep. I woke after only 5 hours. I was sore and fatigued and starting to feel a bit like I’d been pummeled by all that beautiful music. By the afternoon my head was pounding with an all over mast cell headache. My back was bothering me a bit and my head itched terribly, but I didn’t pay it much attention until later that night when I went to scratch my back and felt three giant cysts growing there. I looked in the mirror and realized my entire back was covered in cysts and hives. I took a double dose of Benadryl and my husband covered my back in hydrocortisone cream, which calmed things down fast.
For two days, I experienced a variety of symptoms, from nausea and diarrhea to a stuffy nose and eyes that wouldn’t quite focus right. My symptoms seemed to run the gamut and include every system of the body. My dysautonomia flared and I grew dizzy, anxious and bone-weary. I wasn’t sleeping well. My brain fog even increased, making it harder to concentrate or remember things, while my nerves lit up here and there, causing sharp shooting pains at random.
If you’d like to learn more about how mast cells react to vibration, this study on vibrational urticaria gives a great details and discusses the genetic origins for vibrational urticaria that isn’t a part of MCADs. This Wikihow does a nice job of breaking down ways to help treat a vibrational urticaria reaction, which for some, is a genetic disorder that’s not associated with MCAS. It proposes much of what I’ve written here, along with taking warm showers instead of hot, avoiding the use of soap, and using cold compresses in addition to oral meds and creams to calm hives and pumps that occur as a result.
Putting It into Perspective
Luckily, this little firework display of symptoms didn’t last long, nor did I have to continue taking the Benadryl for long. After 72 hours, I mostly felt like myself again. Had I attempted a concert back in April before I began to get things moving in the right direction concerning my mast cell issues, I have no doubt the payback would have been much worse. Perhaps in a year, assuming I have things under even better control, it’s possible that the payback will be even less. Even if that’s not true, so long as my baseline is somewhere in the neighborhood of where it is now, I would do it again with barely a hesitation.
My advice to anyone with the trifecta who wants to enjoy loud events is to consider not only what kind of payback you might anticipate, but also what the experience itself will do for you. As zebras and spoonies are so often denied so many experiences because of our vast limitations, sometimes we just have to say fuck it and pay the consequences so we can soak up the joy until it all comes crashing down. Of course, there are smart ways to do it and then there are those ways which will put us down for weeks. Had I not prepared well, had I decided to eat out, to leave my mask behind or get that hotel room, I’d probably be writing a very different article. DO the things you love most, but find ways to do them that work better for you. Pick the periods when you’re doing particularly well. Prepare. Keep your exposures to an absolute minimum. Take notes for the next attempt. They may still turn out to be hard on you, but you could take the recovery time from weeks to just days.
I can compare this experience to going to a Bengals game just a couple of years back. I attended that game in a wheelchair trying to cut down on payback. It took me weeks to recover and I held on for dear life just to get through it; not the most enjoyable of experiences. I had prepared, but I wasn’t treating my MCAS (if anything I was in denial about having it), I ate at the stadium, and I had no idea that vibration was affecting me this way. If I had a skin reaction after that game I don’t remember, but I certainly wouldn’t have connected it with the vibration of stomping, screaming fans and the loud speakers placed throughout the facility blaring music and announcements.
Finally, If you haven’t been diagnosed with MCAS, but this all sounds familiar to you, get tested. Don’t wait until you’re in a state of constant reaction like I did. There are many things that can substantially improve MCADs and the earlier the intervention, the better the outcomes.
This site is not intended to replace the medical advice of a trained medical professional. Readers are advised to consult a physician or other qualified health care professional regarding treatment of their medical problems. The author disclaims liability, loss, or risk, personal or otherwise, which is incurred as a consequence, directly or indirectly, of the use or application of any of the contents of this site or its articles.