Daily notes for the last couple weeks
April 19 Another day. Heart rate 100 mid morning. Attended class, but cough was bad. Fever 100.6 by 7:00. As always, heart rate and temp stayed elevated. Stayed conscious today during aura window, although in a stupor. Vape fumes a couple times today. Indoor temp 68-so nice. Cough and heartburn bad at night, along with persistent fever. Leg muscles aching so badly. Knees are so painful even at rest. Needing extra padding to support them in an even more bent position. Tomorrow is a warm, stormy, low-pressure day. Sense of smell must be amped up right now. Guessing the pressure drop is contributing to this very achy brain. Area above ears hurting most. Also getting startled by noises. Stuporous. Aura state at 4:00 am with some loss of consciousness. Getting less predictable. I miss visual auras! Let's go back to that. 4:45 I saw some lightning that could explain the pain spike and sensory overload.
April 20 Another hot day, and stormy. Made the apartment smelly. Bedroom confinement. Slept hot. Sweat a ton. Sooo hard to get out of bed. Every part hurt so much, it felt impossible. Bathroom needs are the only thing that gets me going. And I barely make it. I had to stay in bed most of the day. Bed stayed damp with sweat. Bedroom was hot and stuffy. 78 degrees. Fever 99.6 daytime and 100 at night. Cough was bad. So many things make me cough, rather convulsively. It comes in waves on and off throughout the day and evening now.
I got little breaks today to try to be out in the living room with a direct stream of air on my face. It's easier to eat not in bed. But of course, there ended up being smoke I blew in at one point. Amazingly, I did not struggle with consciousness today. Should be a cooler night and day tomorrow. I wonder if things will ease up. Joints are hurting as much as ever. Muscles ache all day. I'm so ready for this flare to be over. At least the fever was a little lower. Earlier class schedule today should improve the spacing and timing of my meals, if I can manage it.
Late night out in living room. Even though it's cooler, some remnants of the day's stink remains. Have to ventilate to stay out here.
April 21 Wow, it was cooler, but today was a beast. My sleep got interrupted, so that kinda ruined everything. I fell asleep by 5, in bed! But I was awoken around 11 by the usual garbage truck for some reason. I was trapped under the weight of my heavy body pillow with a lot of pain in foot and knee and hip. I staggered to the bathroom and back to bed. But if I couldn't get back to sleep, I'd be in trouble. So I took an extra half dose of Ambien as prescribed, and finally got back to sleep after what felt like a long time. I was still asleep when Mom came over at 3. The second wakeup was slightly easier due to not sleeping as deeply. But the day was doomed. I ate breakfast around 3:30. I rested in pain until about 7:15, when I finally got my lunch. Then, it went all downhill. I went into a brainstorm aura between 8:15-10:45. It was the usual horrifying experience. At least I got on a rigid neck brace this time. My head ends up in bad positions when this happens. At 11, I still wasn't really recovered, but forced myself to eat a snack, having missed a whole meal. I never miss meals. I always just squeeze it in. But this was too late. Then, I had to remake the bed due to saturation of the mattress topper fumes. I added a new polyethylene cover to try to contain the off-gassing better. G did most of the work. I mostly just changed some pillowcases and tried to gently hold sheets in place, but even that was too much for my hands. I had an emotional breakdown afterwards, worried that I had strained my left hand too much. My pathetic functionality and "independence" depend on that joint holding out. I've already given up on closing food storage containers all the way. Some of them just won't close without straining my hands too much.
Then, I finally desperately needed a shower. A week's worth of sweaty nights, plus I was starting to smell the memory foam on myself even outside of bed. Disgusting. I managed the shower, but my left hand is barely able to wash my hair, especially to the scalp level. My right hand can't even spread soap. But I did manage it. Fever up to 100.2 tonight. My bubble pops seem to be less painful, but maybe I've just modified so much that I never have weight on it when it pops. Cough is moderate, not nearly as severe as yesterday (maybe because I didn't talk much, maybe because I didn't air out as much, maybe because I didn't eat enough, so I have SO much less acid. It's really appealing to eat less and feel hungry but have less acid.) I have no idea when I'll get to bed given how screwed up my schedule is. This was a rough one, emotionally as much as physically. I won't be using my body pillow tonight, so maybe I'll get by a little easier. But I'm worried about my sleep schedule. It's a cool night, thankfully. But I really have to be able to plan my sleep phases. If I sleep in one go, I have to plan for that. If I can't make it through the night, clearly I have to plan better for that. But my body isn't that predictable.
April 22 I got lucky with the sleep scheduling and woke up at 1. Perfect timing for my sleep and my day. Slept from 5-1 with an interruption at 7:45 to transfer to bed from the recliner with assistance. I also had assistance getting my knee braces on in the morning.
Post breakfast HR 102, Temp 100. Food schedule back to normal. I got so much cooking done independently between "lunch" and "dinner." Around 10, my body was starting with early aura symptoms. I was able to fend them off long enough to eat at 10:30ish. Kept the vibe really low. Yawning spell around 12. Still managed to fend off full aura. It keeps starting, but not going full blast.
Hands are holding out. I feel like hand pain could be down a half a notch today. Still can't squeeze an eye dropper tube, press the volume button on the phone, hold my iPad with my right hand, or plug my phone into the charger with my right hand involved at all. Just imagine how much that interferes with every task in life to be so drastically limited. Zippers are a two-hand job that's not in the cards.
April 23 Another day. Mostly more of the same. Sleep was okay. Day started a bit late around 2:30. But I managed to get all my meals in. Heart rate has been over 100 various times during the day. Fever 99.7-100.2. Only aura time was between 5 and 6. Happily, no problems after that. A night spent with G. We just sat on the couch and watched TV, but I was conscious and not crying. Small wins. Very small.
I awoke with pretty intense flank pain today, unrelated to coughing. It seemed to relieve after I peed, so that seems a bit suspicious for kidney involvement. Watcha gonna do? Temp spiked to 100.9 at night. Burning face with chills. So glad the room is so cool (71) and no intrusive scents. But the fever feels really bad. So achy and nauseated. This is the second time my fever has reached this spike, showing that it is not yet letting up. Head and jaw pain spiking. Cough moderate.
April 24 Another day. Sadly, my schedule ran late again. I need to finish my second meal before 6pm to be able to continue in my class. I'm a ways off from that most days, although there's a fair amount of variation. On my first wake up to move to bed, I couldn't make it to the toilet in time given my nighttime baking soda water and extremely slow movement. I think today was my worst mobility day. I barely walked a step without the walker. A few bumps on hand and knees showed the amplified pain perception that is tormenting me. Tonight, my left hand feels like it won't hold out much longer. Daytime heart rates around 100 when checked (I check when it feels like it's pounding.). Fever 99.7-100.5 over the day, hot at night. Flank pain coming and going. Cough comes in waves. More of the same, I guess. I'm ready to get off this ride. My new walker came, but it's not assembled yet. But no brainstem aura today. And another cool day with tolerable air.
4:30 High fever when a storm came through and brought amplified scents/phantom scent? I swear, knee movement seems more painful every day. Bubbles are impossible, but weight bearing even at the "correct" angle is nearly unbearable, requiring the walker to reduce the weight. Knee pain at rest is notably worse, especially in bed. I cannot figure out this sleeping position thing. Sleeping on my side with the body pillow, my joints are a bit held in place, but the weight crushes me and I can get turned strangely and stuck. Otherwise, I sleep on my back with three pillows under my legs, but it doesn't seem to be enough. Looking into larger bolster pillows to use in recliner and in bed. My knees feel like they require even more of an angle at rest. And of course, my knees swell up in bed, because that's when the compression braces are off. I think it's important I keep sleeping on my back to try to avoid the hunching spine tendency.
April 25 Not much new. Still cool. No scent intrusion. I do have a new plaque on my abdomen. No brainstem aura again today. Anytime I got sound sensitive, I immediately reduced sensory input. Perhaps being more alert also made me more irritable and emotional. I was often frustrated or despairing. The sounds of pain that come out of me when I sit down or have to bend my knees after standing are like those usually only heard in childbirth. I cannot really suppress those sounds, although I do try when I have company or G is asleep. I am emotionally destroyed by the absolute devastation wreaking through my body and the amount of things I can't do or need help with. I couldn't get out a roll of toilet paper. I couldn't retrieve the food storage lids from the low cabinet. I couldn't close food container lids fully. I just give up. If they don't close, what can I do?
My legs get locked and won't bend after standing, but they also won't straighten anymore. Even at their best, I cannot straighten them. I've lost at least a few inches in height from the bent knees and resultant hunched back.
I've dealt with the usual pounding heart, stupors, exhaustion, fever, cough, flank pain, reflux. And I recognize that it was a good day. It's just heartbreaking that such an excruciating and sorrowful and frustrating day could be one of the good ones.
Fever was around 99.5-99.6 during the day, but came up in the early am hours to 100.1. Lower than it has been.
April 26 Same day in many ways. Huge, hot, bubbly knees that won't bend or straighten. Walking is so painful and stiff every step and almost impossible after rest. I tried bending my knees between steps, and new bubbles form with every step, increasing pain after walking. My legs basically get locked in one position, and I just have to try to maneuver with that. It makes my balance really bad too.
No brainstem auras again. We've had more cool weather and no scents. So nice to have a small reprieve from that horror. No aura since the 23rd and no bad aura since the 21st. That means more alertness. I still am at a stupor level a lot of the time, but it's more manageable and functional.
Still sweating through all my sheets. But fever has been lower today, and heart rate less elevated. Elevated HR was 94, and temperature during the day was 99.1 and at night 99.7. Same old every day endless nighttime reflux. The jaw/facial pain in the right cheek has never gone away. Yet another hot spot that can't be touched, along with the right hand, that overreacts to the tiniest bump or strain. I would be excited to be able to hold a glass with my right hand again, or something of about that weight. It just makes life so hard. There is a faint bruise visible over the right hand painful spot. Coughing less today. I don't get my hopes up, but I am grateful for this current let-up in some symptoms.
April 28 The very slight improvements are still evident. Elevated HR was 92. Fever was 99 during the day but up to 100.4 at night. Coughing was mostly gone during the day. Still some coughing spells at night. I showered, and while it still felt impossible, I was able to use my right hand very slightly and carefully to spread the soap around.
No brainstem auras again. No intrusive scents. Such a nice break. All movement feels about 2% less painful. Cooking slightly easier. Knees seem to have slightly less intense bubble popping and slightly more ability to bend.
But a new symptom emerged, which is swollen ankles. It's not a pitting edema, but it's also not yet painful like my knees. But very clearly swollen. My ankle bones are mostly smoothed over. Who knows what that's about? Could be circulation related or just more joint swelling. I've never had it before. Even when I sprained an ankle or broke my foot, it never swelled, making this swelling thing feel like a baffling development.
Oh well. I'm taking and acknowledging any slight improvement I can get. We'll see what happens next. We've got some low pressure challenges coming up, but at least the temperature is not going back to summer weather just yet. The temps have certainly decreased the stress on my body and made sleep easier, although still so painful. Also, I have avoided the bodily stress of going out for a few weeks now.
Sleep is still a sweaty and painful affair. I usually fall asleep in my recliner and wait for Gustavo to help me hobble to bed when he gets up. The compression knee braces are so difficult and painful to get on and off, but absolutely indispensable. My skin also hates them, getting these rough itchy patches I've gotten accustomed to. But I can't really walk without them, so I will keep struggling to get them on. I will not have help to bed tonight, so I've got to stay on top of my schedule and get myself in bed before I'm sleepy. But there are so many nighttime challenges that keep me from going to bed any earlier. So many stupid things my body demands before sleep. Drinking so much baking soda water for all the hours and hours of heartburn. Applying multiple gels and ointments in and around my eyes. Peeing out all of that water I had to drink. And honestly just surviving the surge of fever, cough, and malaise that kicks in from 2-5, preventing any sleep in that time. My body can't wind down during that assault. And my temperature is going up instead of down like it should with a healthy circadian rhythm. When it finally starts going down, at last, I have a chance to sleep.
April 29 HR 96. Fever 99.4. Starting to have pain in both hips. So, so tired of this. Excruciating wakeup. Flank pain and jaw pain persist, along with that thoracic spot. Pressure dropping today. Hips are aching like hell now. I can't recline my recliner, so I can't take the weight off my hips. I'm so tired. 7:00 HR 98 Temp 100. In a stupor.
I don't know if knees are really any better. Just different. Huge pressure when bending after standing, but less actual bubble popping. The bubbles are still felt. They just disperse differently. Same excruciating wakeup. Thoracic pain that's been there for months. Flank pain. And the freaking knees. I can't remember what it's like to not have knee pain, since it started in my adolescence (thanks, EDS), but this is like nothing I've experienced.
That aura window came back today. Brainstem aura with prolonged loss of consciousness from 7:00-8:30. Hips were killing me. Also, even though I was wearing a collar, I woke up with a lot of cervical pain. I need to wear the rigid collar to pass out.
Fever to 100.2 late night. Episodes of coughing again. The thing that is oh so gradually and delicately improving is my right hand. It's so subtle. But not such an extreme hot spot. Still not willing to push the grip strength, because the only thing that seems to help it calm down is avoiding any activity that can cause a pain spike or loss of grip. A single wrong move and the healing is set back. God, it's so slow.
I'm so tired. And now another decision day has come. I put a firm pause on visiting houses after the last two visits caused major progressions. But tomorrow, there is a possibility I will go on a car ride to a potential house visit. I don't think I should do this to myself. But avoiding anything that will make me feel worse will always feel like the only option instinctually. I believe it's too soon. The housing market is too hot. The prices are apparently inflated with high interest, but still a hot market. There is no way we would be entering a house without residual scent from many other daytime visitors due to high foot traffic. And I swore I would wait until this flare calmed down. All of these newer symptoms from this flare. That means heart not pounding/racing all day. No more fever. Improved breathing. I guess I can't hope for less pain or better mobility, but I would wish for that too. At least less overt signs that my immune system is in crisis. At least no new symptoms developing (like the swollen ankles and aching hips). These decisions to press and overextend my body do not only have temporary consequences. Yet again, my current interests and my future interests are not aligned. But without caring for myself in the present, there is no possible future.
April 30 HR 100. Pain was very high today with even lower pressure. Pain in feet is suddenly worse, seemingly an effect of my extremely altered gait. I had a very specific gait for years that minimized my foot pain. No follow through to the forefoot. Now, it all seems to be that all of my weight is on the forefoot. In any case, my feet and their various types of pain, which haven't bugged me for a while, are worse again, with new pain in my "good" right foot and pain crossing over to nerve pain in my left foot. I have been trying to only use my walker as needed, which is about 80% of the day, but maybe for gait purposes, I should just use it all the time. I still can't walk anywhere near normally, but it seems less deformed with the walker.
Next up, aching muscles and bones in my legs. They just ached all day. Then of course, my knees. They're bitchy as ever. I guess it's technically less, because I make less childbirth sounds when I sit down or try to bend my legs after standing. But barely less. Just barely.
My hips are still having the new pain when sitting (essentially all day). They hurt in bed and in my recliner with the ergonomic seating. My hips just ache and sometimes throb, and occasionally I feel a bubble in there.
My hands are similar. I may have another 2% improvement in my right hand. It's subtle. My left hand is probably 2% worse. Worse pain at the base of thumb and continued in the inner wrist tendons.
My flank pain is still there, worst in the morning. My old thoracic spine pain is still there. It's the same pain that started the day after our wedding and used to flare up now and then, but I could manage it with certain PT exercises. Now, it's permanent. My neck was still a bit troublesome today. I really need that to stay strong. My muscles and my fusion and my bones and all of it. Not allowed to deteriorate.
My jaw pain is still acting up. Hurts to the touch. Hurts to open my mouth. I don't eat anything that takes much chewing, but clenching hurts too. More right side today.
And finally, the brain pain.
Today was another brainstem aura day. By the time I finished a meal at 6:00, I knew what was in store. My senses were heightened. I was in pretty bad shape before that too. I knew the house visit wasn't possible. G went. I haven't heard yet how it went. There's no use really, because I clearly can't go anywhere yet. This flare is not letting up. Today would have been the perfect circumstances to trigger a horrific response with a car ride. When my senses were all going on high alert and my body needed to do its horrible shut down thing. If I had been out in the car during that, my system would have been completely overloaded and responded badly. I was already going through hell just hunkering down through it alone in the dark silence. The aura lasted from 6:15 to about 8:30. My hips were aching so badly. There's just no way to be comfortable. But at least I didn't make it worse. I blame the barometric drop for the last two days being worse. But it's always something, isn't it?
Temp is 100.2 tonight. HR 93. Ankles remain swollen and cough comes and goes. Left knee is throbbing constantly tonight. I know I've said it, but I'm tired. I'm tired of this bodily assault. I need a break. My body needs rest. None of this is restful. I can't rest in this state. I don't know how I'll recover from this. I'm still really so very grateful for the mild temperatures allowing for freedom. I still can't imagine being confined to the bedroom, without my recliner and my place to eat. I still haven't figured out how to eat in the bedroom since this progression.
Match 28th was yet another before and after event in my life. Another moment when everything got worse on a dime. I'm tired. Tired of living through this and accepting that this is just how it is now.
Another thing I am endlessly grateful for: the enormous efforts of Mom and Gustavo to help me navigate this and help me with so many practical things I can no longer do for myself. It feels scary and horrible to be this reliant on others. Others who can't be around all the time. How am I supposed to face it? I feel so sad and scared when I have the bandwidth to feel anything.
May 1 So grateful for the still cool enough weather, even though the low pressure wreaks such havoc. Mostly the same day. HR was 100 earlier (between first and second meal). Milder aura without full loss of consciousness today (so thankful). All pains about the same as well as mobility impairment. Although I rely on the walker more and more of the time. I only take a couple steps around the kitchen with full hands without it. Maybe 3 or 4 steps here or there. The amount of weight I put on it varies. When I first wake up, it's as much as possible, although I still can't put weight on my right wrist, so it's awkward. I bend over and lean on my forearm. I would like to be able to walk upright again, despite the upright walker not working out. (Anyone need an upright walker? It's available.)
Fever tonight feels high. 100.4. Coughing. Knees are throbbing again tonight. This nighttime throbbing feels like my knees are desperate to not be compressed. But I need compression to walk, and I can't be taking them on and off. Just have to count down the painful minutes until bed.
I still usually fall asleep in the recliner so that Gustavo can help me into bed when he wakes up. It's only 30 minutes or so between when I tend to fall asleep and when he tends to wake up. The help with my compression knee braces is the most essential. It's painful getting them on and off due to both the tenderness and the pain of resisting against the force. But he does it quickly and has perfected the technique. It's kind of a sweet ritual, believe it or not. Me moaning as I painfully try to remove some clothes and then him helping me with the last step and kissing me goodnight.
Appointment with psychiatrist today. He's great, but I don't think he realizes how low my mental health is on the priorities right now. Survival mode, baby. One step after another. There's just too many other practical crises. I'm tired. Have I said I'm tired? Yes, physically, but more so existentially, I think. I'm tired of existing. I'm tired of enduring. Give me rest. This body still can't rest. I'm grateful I do manage to sleep with my elaborate pillow/cushion setup and careful positioning and sedatives. Grateful the bedroom isn't hot and humid. I can't be grateful for a single wake-up. Those suck. Sometimes, I feel almost relaxed, but the second I try to move anything, I moan and groan and often cry out in pain. And another excruciating day of existence begins.
May 2 It's hard to imagine a relatively low-maintenance day being any harder than today. But my environmental needs have actually been quite low. Run the air purifiers on full blast in whichever room I'm not in. That's the whole air management plan. But all of that changes over 70 degrees. No, not exactly, but pretty close. The warmer, more humid days are coming, and bringing all the amplified scents. There will be bedroom confinement to avoid those seeping scents, which means somehow spending nearly all time in bed. This disfigured version of my body is NOT happy in my sitting-in-bed position. I struggle even in my perfectly customized recliner. Being in bed is painful. My sacrum and now my hips suffer most, but also my spine. Also, getting into bed is a bear of a task I will have to do many times a day. It requires stepping up on a step stool and lowering myself onto the elevated mattress. And then popping those knees so they don't stay stuck straight and full of pressure. And then, I am already struggling so much with the frequent walks from the living room to the kitchen. The distance from the bedroom is further, and I'll also be wishing I could move faster to reduce scent exposure. I will also wish I could move through the doorway faster to lessen how much fumes get into the bedroom. I won't be able to zip up the door with plastic, because I'm simply not capable.
And then there's transporting food. I have barely been managing it. But reaching the bedroom will be harder. And then what? Where do I eat in the bedroom? I bought a new tray and tried eating in the chair, but I ended up with unbearable sacrum and hip pain. But I can no longer eat on a tray in bed. I believe it's impossible now. I don't have a solution yet for where and how to eat. I have just the right set up in the living room. I have my support rails and my coccyx cushion and tray and so much padding all just right. I don't believe I can reproduce it.
I also have issues preparing my daily meals. I don't cook during the day, but I do assemble my meals, and it's rather labor-intensive at this point. I may have to change up my routine, because carrying plates and food back and forth in the kitchen is now a huge strain, and I can't use my walker. I need to put so much weight on my walker most of the time at this point, and I can't do that during food prep. So that's still a big challenge.
And all of this is ignoring the actual temperature. The bedroom is about 3 degrees warmer than regular room temperature due to the air purifier, so it will be warm. My fever won't like it. My sleep will suffer. I don't know exactly when that will become problematic. But anything above about 72 bedroom temp is detrimental to sleep.
And then there's air management. In warmer weather, I generally have to manage the air frequently. Check the outdoor air. Ventilate one room at a time whenever possible. Perhaps buy myself some time in the living room if the conditions are right. But I can't be constantly getting up and moving quickly to set up fans and ventilate. I can barely open the patio door. I can't lift or turn on the fan or open the window. So what? Just no time outside of the bedroom? Just none. When I get access to fresh air, I feel revived. How am I supposed to get by?
My god. Just today, without any of that nonsense, has felt impossible. I was sobbing uncontrollably tonight after some stoic days. Maybe I was just allowed to cry and feel my feelings because the migraine pain was lower. But I was mourning so many things. The difficulties of my everyday life astound me. The amount of pain and struggle to barely meet my basic needs. I'm afraid I'll give up on food. It's the great challenge of my day at this point, and it feels basically constant. Maybe I give up. Maybe this is the breaking point. Call it a day. I gave it my all. F. I don't know.
Today was about par for the course. Fever 100 most of the day. 100.3 tonight. HR 90-95. Coughing on and off, more at night. Did not lose consciousness, but plenty of stupor. Grateful for that. Shoulders are starting to hurt as I lower myself onto the toilet. Great. Plus, my feet are starting to hurt too much with my go-to running shoes, leaving me with only my one pair of walking shoes, which I am grateful for. But I bought a TON of these running shoes when they were discontinued. I still have flank pain, and pee smells bad, quite frankly. Is there any chance of kidney involvement? An infection driving some of this? I'm not sure that happens without urinary tract pain, and my bladder is quite sensitive, so I would feel it. But who knows?
Mobility, body pain, and those freaking bubbles in my knees needing to be popped or sometimes just dispersed (?) every single time I sit from standing. It's a torture I have to go through maybe 30 times a day? Maybe quite a bit more. I've never counted. Crying out as I sit on the toilet. Crying out each time I sit down, forcing my legs to bend to release the awful pressure.
Oh, I wish it would stop. But it won't stop, and it won't get easier. I'm done. I know I can't be, but I'm done anyway.
May 3 More of the same kind of day. HR 98 when I checked. Temp around 100. Coughing at night, along with the heartburn. Dealing with some digestive dysregulation. No environmental problems. (A couple weeks ago, G talked to the neighbor when he saw her lighting up her strawberry cigarette outside. I haven't noticed it inside since!) Prolonged episodes of stupor, but no loss of consciousness. Mobility and body pain has been more of the same. We're at a delightful 44 degrees tonight, so 72 in the living room. No air problems, although it's feeling/smelling a bit stuffy in here. Not prepared for warmer weather and increased scents and increased confinement.
I see how repetitive this is getting, and I'm even boring myself looking over this, so maybe I'll stop writing, or I'll just keep it briefer.
Thanks for checking in. I have no idea how to keep going, but I'm still here in my private hell, watching it all burn down around me.
