For the last 14 months, I've been diligently avoiding thinking about my illness by devoting all my energy to: 1) maintaining my strict daily routine, and 2) studying Spanish, reading about Spanish, listening to Spanish, taking classes in Spanish, literally just thinking about Spanish most of the time. I've had some moments where I got pretty obsessive, but for the most part, it's been a healthy outlet and distraction. This has not impacted my physical health, but it's been good for my mental health, overall. A caveat is that I have mentally and emotionally retreated into a shell in a lot of ways. I don't follow the news. I've had periods where I'm not using social media. And I'm even worse than usual about maintaining my real-life relationships. I also haven't been blogging or even keeping track of anything about my health. The exception is some trial and error of a few different foods. But I didn't take any notes, so my memory doesn't really allow me to report how it all went. What I know is that late winter and early spring has become a positive time of year for my health, so that is when I was able to add a few foods. I put on a few pounds. Got out of the crisis weight zone, barely. I also reached a point of truly being able to appreciate little moments of peace and ease. This really peaked with an outdoor visit with some family members I haven't seen in years. I was masked. I didn't get close. But I knew to truly live in the moment and let myself be happy about it. And I was. I know how few and far between the victories are. And I knew that improvement is fleeting.
And it was. The warmth of summer and necessity of AC brought back all the usual problems. I won't recount them all. The general effect is one of permeating fragrance invading my home and a huge uptick in migraine and all other symptoms. This has led to a return to spending nearly all my time sealed in the bedroom, only being able to air out during the overnight hours, when it's coolest. Some nights don't cool down, so I don't get to air out or cool down the bedroom at all. It gets extremely stuffy, hot, humid, and musty in my little sauna prison. But as sick as the heat and humidity make me, the fragrance that fills the rest of our apartment causes monumentally more suffering. Mind-blowing levels of pain in my face and head. So I am better off sealed up tightly in my bedroom most of the time. Nonetheless, the ability to blast the AC and the fan at night to freshen and cool the air is critical to my survival. (Insert foreboding omen here...)
After recognizing this seasonal pattern, I have dreaded summers. Back in May, right before our first heat wave, I remember apologizing in advance to my mom and my husband for what was about to happen, hoping that somehow I'd used my time with them well enough, added enough positivity to their worlds, to make up for the misery I would be bringing, knowing that the generally pleasant and calm and loving version of me would be leaving. Just hoping that I had done enough to justify my existence in the coming months. And also knowing that I may never get back to that state. Seeing how it's gone so far, I don't believe my existence has been justified, I believe I gave all I had to be a positive force in their lives, but these negatives are just too high.
I had gone quite a while without passing out. But the migraine with brainstem aura returned. John Hopkins describes my general migraine state well, ever since I stopped tolerating treatment in 2016: "However, in some patients, the migraine is particularly severe and long-lasting — and may even become chronic, occurring continuously for weeks, months or even years. If improperly managed or left untreated, intermittent migraines may essentially transform into a chronic daily headache, with continuous and smoldering symptoms that periodically erupt into a "full-blown" migraine. This condition is extremely difficult to treat." I get all flavors of migraines, with an ongoing baseline level of migraine. I get hemiplegic migraines. I get vestibular migraines. I get visual auras. I get brainstem auras. I have various migraines coming and going at all times. The brainstem auras (previously called basilar migraines) cause me to lose consciousness (up to 1-2 hours) or have prolonged presyncope (reduced consciousness--often on the verge of passing out). Followed by days of massive pain, of course. The baseline migraine state has kept me in a permanent, waxing and waning fog. Some level of cognitive impairment is constant, as is a level of pain. There is also a dulling of emotions nearly all the time. I am not who I once was. With the exception of one day, I have been stoic even while writing these words. Blank-faced. Maybe a few tears crossing an empty face. So if these sound like the words of an anxious and desperate person, that's not quite right. I actually feel very blunted emotions. And my inattentive mind doesn't dwell on anything for long.
Along with the worsening due to the heat, of course, I lost some foods and some much-needed pounds. But I'm also not doing great processing any of the food that I take in. I had foods I wanted to trial, but all thoughts of trials or improvement are eliminated for this year.
Anyway, I'm actually writing after all this time because for the last 4 weeks, I've been going through an exceptional spike in symptoms, enough that it encouraged me to take note of my symptoms again. These are the notes written in my phone. I have simply copied and pasted. This is not refined or censored. It felt like I needed to get it all out. To have some record of what I was going through. Maybe to warn my future self away from ever forgetting this level of hell. Maybe just a place to put all the pain I have been in. Again, these are unfiltered thoughts. I'm sure a lot of it sounds self-pitying and repetitive. But honestly, I play nice and smile and put up a brave front and all that shit almost every day of my life. I say, "Bien, bien. ¿Y tú?" I suppress and distract nearly all of the time. But this was not a time to suppress, since I simply was not capable. It had to be expressed. This will be very repetitive because reactions are PROLONGED. I decided the pain decreases about 2% each day after peaking around day 3 or 4 after a level 10. I wrote a little bit every day for three weeks, although I lost track of time.. My brain goes through the same thoughts each and every day to varying degrees. It's nothing new. But just cause I'm used to carrying it doesn't mean that it's not heavy or that I can always carry it alone and with a smile on my face. Basically, I fake it until I can't.
June 28, 2022
I went to a doctor's office to look into my vision, which changed drastically overnight in one eye. I have read that sudden reversal of lifelong myopia should be investigated. And at the very least, having the appropriate vision correction might lesson my continuous migraine flare ups just a little, by reducing eye strain. I also have the chronic dry eye, frequent corneal abrasions, a permanent stye, and swelling eyelids.
Who the hell did I think I was? Why the hell did I think I was entitled to a new pair of glasses? What made me think the world would allow this to happen? Lest I had forgotten that I am worthless, the world was happy to remind me. You are nothing. You deserve nothing. And you will be treated like the piece of shit that the world believes you to be. Learn your lesson. Don't think for one second that this world is for you. You don't belong. You are not welcome. You are trash. Thanks, world, for this reminder.
June 28
3:35
3-5 minute fragrance exposure wearing paint respirator for chemical odors. Had to leave the building before I could even check in for my appointment. Immediate brain and face pain to a perceived 10. Hysterical crying and screaming and death wishes and rage.
4:45 Extreme fatigue with persistent brain and face pain (redefining level 10 pain). Screaming loud tinnitus. Vertigo.
5:00 Urethra starting to burn. Muscles burning and aching throughout legs. All painful areas amplified (especially knees/feet/thighs/shoulders). Extreme muscle tension. Waves of goosebumps. Loss of balance. Loss of appetite. Burning eyes. Burning mouth. Extreme lethargy. Out of breath with a few words. Nausea. Unable to urinate more than a few drops with a full bladder. Painfully swollen urethra. Pleurisy. Costochondritis. Ear canals swelling. Abdominal swelling. Itching, crawling skin. Temperature dysregulation: hot face/cold legs, allodynia: skin hurts.
June 29 Head/face pain 8. Heart pounding after eating. Yawning spell. Extreme fatigue. Pre-syncope and brief syncopal episode. Vulva burning. Mouth burning. Air outside the bedroom triggering pain spike worse than usual. Much more sensitive. Swollen eyelids.
July 1 Head/face pain 6-8 with spikes to 8-9. Ice pick pains in occipital area. Tooth/jaw pain. Tooth sensitivity in specific areas.
.July 3 continued ice pick pain in occipital and jaw/teeth. Mostly unchanged. Burning nerve pain in feet. Bladder pain ongoing but lessened. Eyelids swelling a little less. Overall stuporous state, but able to come out of it at times.
July 4 Histamine symptoms. Burning mouth and feet. Swollen eyes. Stupor. Continued head and face pain and pressure. Lowered tolerance for being near people.
July 7 Severe neck spasms in sleep leading to full body vibration. Neck muscles clenched so tightly while sleeping that the muscles began convulsing. I got up to find the source of the vibration before realizing I could barely hold my head up from the muscle fatigue. Muscles continued to clench as I tried to get back to sleep. Had difficulty holding my head up the whole day from muscle exhaustion. Day 10 of severe pain. Confined to dark bed still.
Hopeless Ruminations
On the way home from the doctor's office, amidst the hysterical cries, I couldn't help but notice the truly shocking difference. Seeing people walking around inside that building with no ill effects. Then watching people just out for a walk on a nice summer day on our way home. Then seeing my family gathering to welcome a new family member to the world over Zoom that evening, a world that I should be a part of, but never will be. Nephews that will never know me. All while I am forced to continue suffering through this tortured and doomed existence with no purpose and no future, unable to experience joy or pleasure, while suffering through the worst agony I can imagine repeatedly for the rest of my days and miss out on anything that could give my life value. There could not be enough to justify this existence. There exists nothing in the world that could be worth this specific type of suffering, in both nature and scope. There will only be more suffering and loss. People are able to get through the grief of life and loss because something new can come into their life. Anything. New people. New activities. Children. Pets. You fill that grief hole with something new. But I will not get new things. I have no way to cope and move on from grief. My world just gets smaller and sadder and lonelier.
I live in a different world. I'm like an alien, my mutations making me incompatible with life on this planet among this foreign species. My experience has so little to do with the human experience of other people. The type of suffering so vastly different than anything most people could possibly ever know or even imagine. (I said different, not worse--not trying to claim a prize here). I would truly settle and be satisfied if I could just go back to being a regular chronically ill person. The kind whose symptoms frequently interfere with plans. The kind who is forced to rest after any exertion. The kind who has access to various types of treatment for pain or symptoms. The kind that can have a dog as a companion or even a helper--to love and be loved. The kind that can take a relaxing trip to literally anywhere to unwind. The kind that can experience some pleasure from a special treat in the form of the ice cream shop or massage therapy. The kind that can occasionally dress up a bit nicer and enjoy a tame and brief night out, even if they suffer for it later. The kind that occasionally can be in the presence of those that still care about them after all these years--to have the comfort of the company of loved ones. The type that is frequently still disbelieved when recounting their own lived experience. The kind that has too many doctors' appointments. The kind that has to just keep trying until they find the right combination of treatments. The kind that has the security of safe housing as well as the ability to leave home. The kind that can just get a new pair of glasses when they've had a sudden change in vision. I don't even relate to the chronic illness community anymore, except in an almost nostalgic way. This experience is vastly different than anything I could have imagined, anything my decades of illness could have prepared me for. I knew how to do that other kind of chronic illness. I envy that experience that used to plague me. Now this is merely an endurance challenge to the death. There is no way to avoid thinking about how you might get out of this torment, since it can't happen soon enough. I can only hope that my suffering will be cut short somehow.
There is the injury of no one giving a shit. That other disabilities must be accommodated, but not even medical care is made accessible for my type of brokenness. Nothing is accessible. Family and friends who seem to care are not accessible. It is basically impossible to believe that your existence has any value when the world actually attacks you, targets you, and the vast, vast majority of people will never lift a finger to change this injustice, to try to undo your erasure from the world. How you wish it were as simple as being erased rather than having to continue living this wretched, invisible existence of agony.
You would think that I would have learned this lesson by now, the lesson that the outside world can only ever hurt me and break me. Each time, I swear that I have finally learned. I really hope that I've actually learned it this time. That there is no safe place for me. That risks are to be avoided at ALL costs. That nothing could matter more than avoiding this agony. That the pain of daily life inside that seems so horrendous cannot approach the magnitude of the punishing pain brought on by the world out there, where people are oblivious to the abuses they are carrying out and the lasting damage they wreak. That I am invisible. That I do not matter one iota. That the amount of pain I am in each day means nothing. That it will always eventually come back to this. This scene of me crying silent tears inside a raging body all alone. Crying out to the empty skies for relief, or release. Please release me, oh great void.
Why can't natural selection do its thing on me already? I suppose it has by preventing reproduction, but I shouldn't really have lived this long if nature had taken its course. Medical intervention is not always desirable. The harm it can bring is so much larger than any relief when you are not the picture of a patient that they recognize. Again, this makes me an alien. I am painfully aware that most interventions I have tried have done more good than harm for most people. But thanks for the reminder that I am an unfortunate one. One that is left alone to suffer through my days.
To have your massive suffering be so unfathomably long and so meaningless just destroys you. I'm not who I once was. That person has been broken down and reshaped into a more and more deformed version of anything resembling me. I'm being attacked all the time. I live in this torture chamber.
This also cannot be ignored as a sign of all of the resources I will not have access to in the future. The future is not actually possible without access to some type of assistance. There are times in life when you have to go inside a building. You have to have some kind of medical care. Your body might need help recovering from an infection or an injury. But this experience proves yet again that I must live not only with uncertainty, but more with the certainty that care and assistance will not be available to me when it is needed most. After all this, I feel like I can get through damn near anything without any kind of intervention, as I have been doing for years, but we know that's not true. Yes, it's surprising that I've made it this long. But I am not fooled. I've witnessed and felt every moment of this descent. I've felt the worsening and the progression every step of the way.
There are also implications for the impossible home search, which I had somehow started thinking was an actual possibility, albeit a far-fetched, needle-in-a-haystack type of situation. All of that is long gone now. All hope having been ripped away again, the tiny sliver of it that there was.
Also, knowing that a pain spike so big leads to extended periods of time of severe pain. It is horrific in the moment, both because of the horrors of that moment's pain but also the ongoing pain that it brings. The inflammatory cascade that I dread so much. The exact one that other patients can simply raise their dose for, or do a short course of steroids to get back on track. Without anything to assist and deescalate the situation, the suffering is so greatly prolonged. And with nothing to dampen the pain and symptoms and inflammation. I simply cannot imagine and refuse to face living life like this.
And that is how I got to the point I did this last year. Spending every lucid moment with a focused distraction. Giving up any hope of productivity or contribution to the world. Merely seeking for ways the world can distract me from my pain moment by moment. Distract me from these thoughts of the future, of the present, even of the past. Save me from myself. But when the pain is this high, distraction is nearly impossible. Because you have to be able to focus and care about something in order to be distracted by it. So now I am stuck here to ruminate.
Pain levels are so meaningless. The number of times I have reached a perceived 10 only to then experience worse is uncountable. I used to just call 10 a 7 based on this knowledge, but I refuse. If it feels like it can't get any worse in the moment, it's a 10. It's just that the body is capable of ever-increasing levels of pain. There is no limit.
Waking up vibrating seems to be my body's new trick introduced by this occurrence. It wakes me up out of deep sleep. It seems to start in my neck but then eventually, I sense that the whole bed is shaking. But it's just me. If I sit up, it stops.
Also, I'm currently typing at 5:15 AM. Finally being able to leave the bedroom and cool down and ventilate the apartment between 2:00 and 5:00 AM has cemented even further my status as a nocturnal, vampiric creature. I see every sunrise before going to sleep.
Then, after all of this, my body is approaching some kind of new, horrible normal. I'm accustomed to the requirements of the day based on temperature. I hate it, but I'm learning what is required of me to avoid the worst suffering, and sometimes I can.
This ends the notes on my phone. The rest are reflections of tonight.
I'm in much worse shape than I was before the failed attempt to get appropriate glasses. But I've been adjusting to the higher pain levels and accepting the routine of finally airing out and cooling down overnight. But lest I get too comfortable, I've received devastating news. The news I've been dreading since this time 4 years ago. The news that they will be repaving or resealing our parking lot, right outside my window. This ground treatment 4 years ago started the cascade into starvation-inducing loss of tolerance and suicidal levels of pain. And it is just two days away.
Last time, I had an escape hatch. I was still able to stay at my mom's house. I had to check my blog to find out when this happened. What I wrote at the time:
"I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic after brief exposure." WTH. Brief exposure made me manic? So what is 24/7 exposure going to do? I know I won't be able to air out at night or open the bedroom door or use the AC. I am trying to figure out how to protect myself within the bedroom. But I am not sure how I will survive with no escape. The heat alone would devastate me. Cause escalations and progressions. It has been devastating for me. But there will also be the bombardment of fumes from whatever horrible shit they put on the asphalt.
I've been following the rules of anxiety and keeping the knowledge that this day would come tucked far away in the back of my head. And now, it's here. There is always further to fall, and suffering has no limit. So I am attempting to brace myself for the onslaught of being trapped in my sauna prison 24/7, presumably with a level of inescapable intrusion of fumes, and with no overnight freedom. This is not a short process. The treatment still smells very strong a year later on any hot day. All blacktop does, really. These fumes do not pass in days or weeks or even months. My only relief will be when the weather cools off. But by then, I will already be down the next downward spiral.
So it was the heat, and then it was the doctor's office, and now it's the asphalt.
I say it every damn time, but if it's gonna knock me down again, it'd better finish the job. If only we allowed people a merciful way out of a life of hell. I know I'm trash. I know. I'm a speck on a pebble in the shoe of life. Why would I think I mattered? But here it is. It is upon me. I don't know how to face it. I can't imagine being able to distract. My capacity has already shrunken so much from the 3 minute exposure at the doctor's office. My ability to engage with my needed distraction (Spanish class and study) worn away by pain and stupor.
I am afraid. I'm writing because I'm afraid. I have had another two friends pass away from conditions related to their mast cell diseases, made worse by their chemical exposures and the inaccessibility of medical care. There are others like me. I am not alone, but in reality, though I know of them, all of us with this severe level of chemical reactivity are alone. We are mostly unknown. In many ways, we slip away without the world noticing. There should be somewhere safe in this world. There should be help available to those who suffer in this way. But there isn't. There just isn't.
Some part of me wonders, when I read through the last posts and last messages I had with my friends, which will be my last messages? What will be the thing that finally pushed me over the edge? Do I actually want it to come soon, the way I truly believe in the weeks after an exposure? Or do I wish for this existence to endure? All I know for sure is that those who care the most for me do not deserve to lose me, to grieve me. But for the record, I do not consent to medical intervention without my knowledge. I don't agree to be brought to a hospital if I am unconscious. I only accept medical care on my own terms, which is currently none.
I hate to post all of this after more than a year of silence and disconnect. But at the same time, I feel compelled. A silent scream into the nothingness. I don't even know the point. I don't know what good it does to write this. If I can't put anything positive into the world, maybe I shouldn't be allowed to put in anything negative either. I don't know who I want to read this. I don't know how I would benefit from expressing this. But maybe it's just for the record. So when someone looks back to see what was going on with me, there will be something there.
