I'm so sorry, but this will probably be long. Although this is my first time on a computer in weeks, and I can tell that editing will have to be minimal. Pressing keys is much harder than I remember,
I have a lot of notes saved, because it's been a dramatic time. They're disorganized, because I have them saved on different places in my phone. And Mom wrote some of the acute Covid updates. So I'm sorry if it's repetitive. I've been trying to edit.
June 26 coughing, coughing, coughing. Best explanation is the horrid air quality. I ventilated several times today, not really knowing how bad it was, and not feeling like I had much choice. My Monday night shower made the coughing worse, but it was all day. No daytime AC. GF biscuits. Before the shower, I was already coughing. Plus, my temp was 99.9 and my resting HR was 115. Then the shower made it worse. The shower hurts so much. And it feels so perilous getting in and out. But I just end up choking by the end. I'm still choking. Why was my cough so much less for a few days? Also, my left elbow is worse today. Getting bubbles popping. Nothing to compete with my knees, but it hurts. I still rely on my left arm for so much.
Otherwise, just worried for my honey. Second full day of quarantine. We aren't in total agreement for when it would be safe to come home, but he's symptomatic right now, so not time to decide yet. It is certainly scary to think about possibly contracting it, given the level of suffering in my everyday life. I also couldn't endanger my Mom.
But I am requiring so much help from Mom and Andy. I just think we need to be more than certain before reuniting. I read maybe two negative tests 48 hours apart after symptoms end. I don't know if I'm being unreasonable. It's just too terrifying. It is so dangerous. I mean, I've already been exposed. I don't know. I want to be safe but reasonable. Am I clear from already being infected?
I stayed up so late last night. 6:30. I posted in my blog. I hope to do better tonight with bedtime, but who knows. Not too likely on a shower night. My body doesn't calm well. Fever up to 100.4. And the coughing is so bad. Damn, another bed time alone. So difficult.
June 27 Welp, I've got Covid. I spiked a fever around 5:00. 101.3, 102.5, 103, 103.4. It climbed over several hours. It's staying there. I tested at 9:00pm. Interesting symptom for me was that my GI got inflamed, making it come to a stop and making me lose bladder control all day. An inflammatory symptom for me. Otherwise, I have the fever chills and the cough and the massive headache. And of course, I lost my appetite with the fever and the swollen GI tract. Not sure how this will go. The good news is that G got to come home to me tonight, since we're both infected. Bad news, he and his stuff were scented from the hotel, and I didn't realize in time. And there's no way to air out since our AQI here reached 248 today according to my weather app. The scent hurt my head extra. Don't know what else to say. So much pain and dread.
We have hotter days ahead, with no access to ventilation when it's all smoky out there. That will make everything even harder. Feels like my AC isn't working. But no, it's me heating up. Can't believe I exposed my mom today. Unmasked and closed in. I must have been in denial, but it is truly hard to differentiate from normal tortures besides the high fever. I feel so much guilt for exposing mom and Andy. SO glad G is here. He'll be working virtually from his folks' place this week. He felt 90% recovered today, day 3, although he still tested positive.
I wonder how and when I'll be able to sleep. Obviously, there's nothing to lower the high fever. I know my system is mounting a strong response, so maybe this won't go on as long as I fear. I'm also not sure when my GI will wake up. Will I vomit? Or have to empty manually? Both feel possible. Or all the extra magnesium could kick in at any moment. I sure feel like I could puke.
I had to busy myself making magnesium capsules tonight. I was low, and I need a lot, and I don't know how much worse I'll feel tomorrow. So I got it over with. I also don't know how to say my first day of symptoms. It kinda snuck in with an elevated fever last night, along with my worst day of coughing...but the fever wasn't so high to suspect infection. Heart rate is 120 right now.
I know some people would like to read this daily updates . I'll try.
3:30am. Got up for more loss of bladder control. Then a small bm. Abdominal cramping now. All this bowel and bladder activity will keep me up. Took temp. 104.5, and it feels like it. For real. Don't think it's been this high before.
4:00 peeing every 10 minutes right now. So I haven't been drinking. Great.
4:50 Still extremely overactive bladder. I'm afraid to even try to sleep, because I'm afraid I'll be incontinent in bed. This wasn't on my list of expectations. My head about to explode was to be expected, but still horrendous. Temp holding steady at 104.
How the hell will I sleep with the bedroom heating up into the 80s as it always does? I am roasting right now. I can't take it. And then with no fresh air access tomorrow, I won't be able to cool the bedroom back down.
5:45 After a night with pretty mild coughing, I got set off walking past the AC to get an ice pack, and now the cough is aggressive and violent. Bowel and bladder issues continue. I can't imagine trying to sleep in this state.
6:15am I don't think I'll sleep.
Mom's first email update
Subject: Carolyn update - Wednesday (7/28)
6 PM
I went to see Carolyn at 4, because I couldn't stand it any longer.
She was still sleeping, but got a few words out.
She was up all night with bowel and bladder distress. No appetite, and not drinking. I'm very concerned about her getting dehydrated.
I called her at 5:45, and she couldn't talk, because it makes her cough too much.
She was trying to eat her oat biscuits, and I encouraged her to drink. She said she has no appetite and her throat and stomach hurt so much.
One strange, but good thing, is that she said her joints are doing relatively well.
Getting in and out of bed is easy (it usually takes about 5 minutes). She said she has more strength. She believes it's because her immune system is busy with other things...
That's what I know for now. I'll update when I know more...
Love, Jeannie
My June 28th notes
What a horrendous night. I didn't get any sleep until around 8:30, but woke up about 30 minutes later. Slept in fits and starts, and finally got some decent sleep from 2-4pm. I couldn't really get up until 5:30ish. I'm trying to eat and drink despite the lack of appetite. I can't speak today without coughing. The cough became wet today. My throat hurts. Obviously, my head is exploding.
My mouth tastes disgusting. I can't stand it. Bitter and metallic. Fever hasn't been below 102, but is climbing for the day/night. Up to 103 already. I can't stand another night like that. I was at 104.5 for many hours. Unbearable.
Bowel and bladder is slightly better today. I've had movements, and I'm not peeing constantly. My abdomen is still sore. I think I should skip magnesium completely today, but I sure don't want to overdo it. It's so easy to yo yo.
I can't tolerate any sound today. So much for the mindless tv I had picked out. And my audiobooks. Somehow, I got locked out of the Libby app, but I guess it doesn't matter since I can't listen.
The fascinating and helpful thing is that my joints seem to be on hiatus from torturing me. I'm walking easier. My hands are stronger. And I can get in and out of bed like it's nothing. Proof that it's not strictly weakness. I still have strength. It normally just hurts too much.
Ugh, nausea is kicking in. This has been the slowest night followed by the slowest day.
Brainstem aura coming on. I guess it's been here all day with the the sound sensitivity.
When I say I can't speak, I mean not a peep. Violent, wet coughing that goes on and on.
It was definitely an all day brainstem aura. I ended up in and out of consciousness and then paralyzed from about 9pm-12. Which means I really missed out on seeing G. He was home, but he had to leave me alone to get through the nightmare. So then, I gradually was able to move, and there was a lot to get done. 1) I had not eaten much, so I had to eat a whole meal. It was late, but my day started extremely late and will probably end extremely late. 2) I had to cook. A lot. G held out as long as he could, all conversation through text since I can't speak. But I had to do a lot of cooking myself. How easy would it be if I could just eat convenience food? Instead of cooking up a huge batch of quinoa from scratch. It's a very long process. A couple hours from start to finish. G is still testing positive
All food tastes like garbage, so that's another challenge.
My temperature always drops when I lose consciousness. I was at 103. Don't know what I dropped to, but it's climbing back up.
The next two days are 90°. That will be unbearable. Especially whenever they scent the lobby. Seriously, why does it have to be hot weather, terrible air quality for no ventilation, scented building, all while barely breathing with high fever. I don't expect relief when it's that hot. I will likely be sealed in the hot bedroom, which sounds impossible with this fever.
I'm afraid my GI is yoyo-ing. But at least that means my bladder is a bit better for now.
I'm so scared of the coughing being triggered, because it goes on and on so aggressively. It's just a really wet cough now. And it seems to strain different muscles than my previous cough. Less ribs and more belly.
It's only 2:15am. I wonder if I'll be up just as late or if sleep will come sooner. G is getting up at 7, so that would be pretty convenient if I got sleepy around then.
My torso has been itchy today. I believe that's a mast cell response to the heat of the fever.
Well, the weather apps don't agree on tomorrow's temp. Maybe it won't be so bad. Warmer the following two days. But there will be storms.
My vision is flickering tonight. Very weird. My head pain is getting worse and worse. Vertigo. Oh, the storm is going right now. Surely, that is messing with me. My balance has been bad all day. Migraine city.
3:38 Feeling like I could pass out again. A full day of silence. Such a long day. Wish I could just put on a show or listen to something. My body is aching so badly now. And my bladder hurts despite function being okay-ish.
June 29
Mom email update
Hi All,
I stopped by the apartment at around 11 this morning.
I was surprised and happy that Gustavo was home.
He was leaving for his folks house to work remotely at around 11:30.
Not too sure about how Carolyn's night went...Gustavo was home and he got some much needed sleep, as he is still recovering. We know that she still had a high fever last night (103 again), and she told me that her cough was getting more congested. Her throat is quite sore, and her stomach hurts. Talking triggers her cough, so all she can do is text, when she's up to it.
Carolyn thought she would be watching/listening to a lot of mindless TV shows, but she isn't. She can't stand any light or sound. So the time is just crawling by. Last night she got another brainstem aura and passed out...I don't know for how long.
Love to all, Jeannie
6:30 pm update on Carolyn ~
Terrible night and day...
Symptoms from our texts this late afternoon:
She woke up around 4 pm.
Extreme exhaustion - almost no energy
Overlapping migraines with periods of unconsciousness
Temp of 102.7
Intense muscle aches and sore throat
Cough feels like she's drowning.
Can't talk, very hard to even text
Corneal abrasion, just because
Weight down to 83, even though she's doing her best to eat and drink.
GI symptoms persist
Gustavo is probably home by now, so that's a great thing.
Her joints are still amazing! She can get her knee braces on like they were socks!
Such a strange phenomenon! Nice to have a silver lining.
Hoping for better news tomorrow...
Thanks, as always, for all of the prayers and concern.
Love, Jeannie
My notes for June 29:
I wrote this over a few hours.
2:00am Writing while I feel coherent. I slept. A lot. Maybe 10 hours with only one interruption. But waking up and being able to get up are different. I'm like the dead. Negative energy levels. I'm pretty sure I slept more after my initial wakeup at 4:00. Got up at 6:00pm. So beyond grateful that Andy fixed my bed literally days ago. It hasn't felt this comforting in months, at least.
Muscle aches are intense. Overlapping migraine pains are intense. Add a vestibular migraine to the list today, along with the ocular, and the brainstem aura. All layered. So my balance sucks, and I get knocked over by vertigo. The walker is a lifesaver for that. But G too. He has caught me numerous times. I'm basically drunk. 😆 It feels better not to move, but I can still get struck by vertigo. The brainstem aura is there always, as evidenced by the sound sensitivity that crosses over quickly into loss of consciousness. But the ocular and vestibular are more prominent today. My head and eyes hurt so so much. And my neck is in full spasm. Pain numbers are not my favorite, but I'd say head/eyes/face has been 7-9. Body aches 7-8. Throat is just like post-tonsillectomy when I awaken, but it eases up.
It was another practically silent day. I tried to listen to a new audiobook for 20 minutes, but that wore out my brain. So more silence. That makes time crawl slower than a snail.
I woke up with one corneal abrasion and developed another during the day. The tearing eyes and dripping nose trigger the cough. And they just hurt. My lips are cracking too. So I buy into Mom's theory that I'm dehydrated. Mom is always right. Never doubt that! I have made great strides with this today. Probably drank 80ish ounces, and that's in only 7 hours.
The taste. The taste is disgusting. It is so hard to eat unseasoned food and drink water. Water is the grossest of all. It's the exact disgusting bitter garbage taste amplified to the max. (I have more explicit descriptions.) And yet I'm drinking now. The pain of corneal abrasions is pretty convincing. But it does feel hard on my bladder to keep getting full. It's already so busy. The most delicious thing I've found (out of so few options) is baking soda water, but that is medicinal for me. I can't drink extra.
Talking is still out. When G is home to help me, I text him everything. Although I got away with a few whispers today. Barely.
My fever hasn't been in the 104s since the first day. Today, 103 was the peak, I think. I only checked twice.
Bowel and bladder continue to be abnormal. No incontinence today. But still trying to find stability. I'm trying really hard to maintain my normal level of roughage to help with digestion. It is so difficult. Breakfast was at 6pm. I ate all I could until about 12:30am. What else can I do? I'm stuffed. The food tastes disgusting, but I gorged myself anyway. Yes, I've inevitably lost weight. I assume most people do with a viral illness. It's just more critical for me. I believe as soon as I regain energy, schedule, and appetite, I'll quickly return to my impressive pre-Covid weight. 💪
Although, I swear, this disgusting taste will be a struggle. I read it's a neurological symptom (big surprise), and that it doesn't always leave quickly. I also believe my sense of smell is reducing tonight, which is confusing as hell, and worrisome. It's my essential self-protective superpower.
The cough. The cough is very wet. Very productive. Painfully so. When the coughing is prolonged, it feels like I'm drowning.
There's been an interesting trade-off. With my immune system so busy, it's forgetting to torture me with my joints so much. When I have the energy, I'm strong and mobile in ways I haven't been. The trade-off being the muscle ache that kicked in. It's reduced my impressive regained mobility a bit, but I'll take it. My hands are stronger. My knees bend and straighten further. Legs are stronger, though so achy. I'm exaggerating, of course. Still using my same aids, mostly, but relying on them less. But any improvement is surreal, and welcome to stick around. 🤞🏻
Good god, this migraine pain. None of this is really surprising. This is pretty much how I would have expected it to play out. A few curve balls, but pretty much as one would expect based on my body's usual bs.
I'm glad my system is still fighting hard with the 103 fever. I guess I've just started day 3. Apparently, I have no sense of time. There could be a long road ahead, but I somehow hope not.
4:00 Head/eye pain unbearable. Bladder overactive and deserves its own pain number. About a 7. I think I drank 96 ounces today. But my eyes are sandy, and my lips are cracked. Adding more salt to the menu tomorrow. I wonder when I'll sleep. Not excited for the hottest day tomorrow.
Mom email update July 1
Early Saturday morning updates:
Sorry it's taken me so long to write another update on Carolyn. I've come down with Covid myself, so I have had a distinct lack of energy and a whole mess of other symptoms.
Here is an update in her own words:
4 AM
I've gone noseblind, and it's already had devastating consequences. Basically, sensitization to the lobby fragrance I was obliviously exposed to day and night yesterday, so that today I can't even stand a single whiff of air outside of the bedroom. My head explodes instantly. So I've stayed in the 84 degree bedroom and cannot cool or escape. The non contaminated air has improved my headache but the heat is unbearable. Heart rate 140.
Took a turn. Severe coughing/asphyxiation at 8:53pm. The worst was 3 or 4 minutes of desperation and pulling every muscle in my neck and throat and tongue. The mucus continued flooding my airway, and then seeping into my airway for hours. Coughed so hard that some vomit came up. G stood by my side all along. My throat is shredded. And my swallowing coordination was gone. I couldn't even get down sips of water those hours. Airway is still not calm. Mucus keeps coming.
Then, around midnight, the feeling of starvation overtook me. I only cared about eating and drinking, panicked. So I did. I ate and drank for over 3 hours non-stop. Small bites. So careful. Plenty of choking. But in the end, I drank and ate quite a significant amount.
No idea how/when I'll sleep with all this digesting, but I never want to feel that starvation panic again. I was severely undereating with my reduced time and energy available.
Can't live with this new fragrance sensitization. Nowhere to brush my teeth. And no AC access. And of course the shitty air quality means no window opening. And it's hot. Just can't win.
That's what's new. Been rough. Now I can't have audio, back to zero speaking, and my hands are too dead to play games on a screen. So I'm literally just sitting here.
Hands done.
6AM
Still up digesting.
I think the choking episode was not specifically Covid. It most resembled the "swallowed down the wrong pipe" dysphagia episodes I'm known for. And I was dumb. I spent an hour and a half eating lunch, and throughout lunch, Gustavo and I were talking. (Eating must be silent!) Despite some progressive coughing. He was trying to entertain me and help me get past the sensation of being completely stuffed despite needing all that food and more. I was croaking back to him quietly, maintaining a conversation. And I think all the poor swallowing led to some stuff getting lodged and then suddenly choking me a bit later. And then my body's usual overproduction of mucus, but the worst I've ever felt.
* * * * *
Those two messages were from early this morning. I really wish I could go over and be with her; keep her company and help her do things, but I'm so sick right now, that I would not be helpful at all. I went to the urgent care center this morning, and started on Paxlovid at noon, so I hope that will do some good. I wish Carolyn had something she could take for the myriad of horrible symptoms that Covid brings.
Thanks, as always, for the many prayers and the love sent our way.
Love to all, Jeannie
Sunday, July 2
Where we are today:
Extreme swallowing difficulty. Will need to spend potentially 6 hours a day silently chewing and swallowing to meet needs. Today, the window I had was 5pm-12am. Breakfast 5-6. I have been eating lunch constantly from 7:15pm-10:15pm, and have not completed it. I am starving, but do not have the swallowing capacity to eat all I need even if I don't take any break from chewing and swallowing, but my jaw and throat are exhausted. God, I want to get careless and take big bites, but the choking spell yesterday felt nearly deadly. I've just been sitting here alone for hours trying to focus on swallowing properly.
Sleep deprivation. Coughing and choking kept us both up all night. We mostly slept 10am-2pm. So POTS is bad today. And sheer exhaustion. I can't wait to rest.
Fever dropped a lot. 99.8. That was probably my temp before Covid. Along with it, many changes. Mobility, joint pain all much worse again. Weakness. Knee braces are very difficult to put on. Phone almost too heavy for either hand. Although I can still do my own ponytail for now...barely
Then, my anosmia and altered taste have been shifting here as I write.. I'm starting to smell faintly, and food is tasting more like food.
GI distress from the literal constant intake of food. Still so hungry as I keep eating lunch. Looks like I will finish at 10:20pm. Then what? Just keep chewing more and more food without a rest?
Either way, it will be confined in this bedroom until my sense of smell is strong enough to protect me. Also, being able to air out used to resolve this smell for me quickly, although temporarily. But no fresh air access.
10:25pm Gonna go brush my teeth and then dig into the next interminable plate. My jaw will never survive this. My poorly aligned molars ache. But I'm so hungry. When can I rest?
The dysphagia is not new, just newly worse than ever. With graver choking spells than ever. I feel like I use up more energy than I can take in. When can I rest? Not tenable.
11:15pm Next meal started. Can't be full-sized, but it's quinoa, potatoes, and artichokes. I'm not sure I can eat all this, since I plan on biscuits afterwards. All four.
I feel so much like I'm being punished, forced to sit here and eat literally all day without rest. In this uncomfortable chair. With my hubby right next door ready to make pleasant conversation or watch a show together. Instead. Sit and chew and swallow every conscious hour in silence. He says it won't stay this bad. He's smart.
Taste and smell have evolved in my hours of sitting here. First scent: disinfectant smell on the tissues in a fresh box of Kleenex. Next was a possible whiff of the lobby scent in the living room plus the mold in the bathroom. Taste...food and water started tasting less like bitter garbage.
Finishing this food portion at 12:05. (or close enough) Short break before all 4 biscuits. I feel stuffed and exhausted but still hungry. Still feeling some pieces of quinoa lodged around that could make me cough if I talk.
Well, I got quite faint here for a bit and couldn't stand up for a while. Sleep deprivation or digestion work, or calorie deficit, I don't know.
Came so close. I was able to get out of the bedroom with some outdoor air first! I ate my biscuits silently. At the end of biscuit #2, I had the horrific coughing/choking/gasping spell. It was terrible. So scary. I did prove the importance of spitting out everything during an episode. You can't try to swallow during all that choking. After 6.5 hours of eating today, I had to call it right then at 1:25am. I wanted to be done with everything by midnight, but it proved impossible. And I didn't get to finish eating. So I ate 4 biscuits, full lunch, kinda half dinner, and then 2 biscuits. So despite my best efforts and full day sat in the dunce chair, I still got 75% intake. At 5am, I'm still hungry. I can't imagine how to keep this up. It feels like it gets easier until the next big choking spell. Then back to impossible. I can't possibly give more than I gave today. The only way out is for the dysphagia to improve so I can eat faster, if still in silence. Not sure when I'll talk freely again.
I am so glad G is home another day to help me through this madness, especially the moral support and sense of safety. It is so invaluable. And tomorrow is cooler, so at least the scenery should change to the living room, which will help my sacrum and full spine enormously.
July 3 Mom update
Here's the latest update (Monday morning)...we're going in the wrong direction 😑
* * * * *
Last night was another long sleep.
Wakeup was shockingly painful. All previous pains have returned and worse.
All mobility has regressed and worse.
I barely moved without Gustavo's help. I couldn't get the sheet off. I couldn't sit up. I couldn't get dressed. Left hand and arm are worse than ever, losing my best (only working) limb.
I ate my biscuits silently (90 minutes), then brushed my teeth. Then, we prepared a puree. I couldn't work the blender or empty the blender or do any of it independently. We pureed quinoa, potatoes, and carrots. It was revolting to me. It was a small lunch portion and took 2 hours to eat. I ate it all , but I didn't get a second portion due to the late time and intense exhaustion.
I went to eat my biscuits and made it through 3 of 4 before a choking spell made me stop, despite the lack of talking.
Now, it's 4:05am, I am hungry again, but I know better than to eat so late if possible since that keeps me awake even more hours, making the next day even later.
I had a spell of passing out around 2am, I think. Headache spiked afterwards. (Migraine with brainstem aura) Heart has pounded nearly all day. The exhaustion is intense. Temp 101.8 the one time I checked, I think.
Another secondary migraine hit, this one with visual aura and much more intense pain.
Taste and smell are evolving. I can talk a bit in the few minutes between meals, but I cough more. I'm sure using no AC helped with the coughing, but I've got to run it tonight. I am so grateful to have G home with me for two more days. Cannot imagine it without him.
* * * * *
Wednesday, Gustavo will have to go back to work, so I will have to be much better.
Carolyn needs so much help. Thank you for your continued prayers.
Love, Jeannie
Monday Night 7/3
Extreme exhaustion. Slept long hours again. Ate food between 5:25pm and 1:45am nonstop. 4 biscuits, big bowl of mush , (lunch -ish portion), 8 asparagus, and 4 more biscuits. It is so tiring, and I wonder how I ever ate the massive portions that I ate and didn't take all day. I'm still missing a whole meal.
Totally silent eating again. The 3 coughs are ongoing. The dysphagia cough. The airborne trigger/asthmatic cough, and the Covid cough. All made worse by talking. We both got such an enormous scare on Friday when I was without oxygen for so long.
Like yesterday, I tried for some auditory input, but ended up overwhelmed with my brain shutting down.
Everything feels amplified by this infection. My joint pain and mobility are worse than ever. Need help with everything. My previous cough issues are magnified.
Nausea, heart pounding, head ringing, dizzy. GI is broken at this change of diet
July 6-7
Cough has been less frequent today. The mush is going down easier, so I can spend a little less time eating. No fever tonight. Sense of smell and taste are still off. I'm quite congested too.
Nighttime migraine/neuro episodes: Every night between when I finish eating and bedtime (12/12:30-5/5:30). Intense head pressure and nausea. Vision flickering (a different visual aura type). Head ringing so loudly. Cannot stand another sound. Moving from exhausted stupor to paralysis. In and out of consciousness. Body becomes increasingly painful and unbearable. Cannot find a comfortable position. Terrible heartburn. Heart pounding. I stay in this state for hours, sometimes very quietly crying out in pain, to the extent that I can vocalize. G came home to find me like this at least the last 2 nights. Other nights, it happened after he went to sleep.
I am still forced to avoid sound all day to avoid this state. But there's usually noise at night, especially the AC and purifier. I can't stand it. As soon as I go to relax, this starts up. This has been nightly for ~5 nights.
The avoidance of sound shows the level of desperation. No podcasts. No audiobook. No tv shows. I'm behind on all the stuff I like to watch/listen to. Instead, I just sit in silence. 10 days of this so far. I've only dared try my audiobook for short periods of time, but I feel the ringing and pressure in my head increase and know I need to back off. I know it will eventually end, that it won't stay like this, but it is extremely difficult.
Ankles/feet look like alien clown feet...so swollen. New symptom of extremely itchy torso, gets quite intense close to bedtime. I haven't had widespread itching since cutting most food from my diet, especially meat and high histamine foods, so it's concerning, especially with no antihistamines and no more food to cut out. Hoping it's just angry mast cells that can calm soon.
My body can't rest at the end of a day of sheer exhaustion due to all these symptoms. As soon as I go to relax, all of this awfulness starts up. I'm also having trouble getting comfortable in my bed. I have no explanation besides my body just hurting more than it should.
I'm grateful for the improvements and hope they continue.
July 8?
Carolyn's Saturday night update ~
* * * * * * *
My plan to finally take a shower was foiled by my broken brain.
I prepared mush myself today, but it didn't go great since I couldn't close the blender tightly enough. Nonetheless, I made it.
I finished eating my first serving of mush and then a small dish of broccoli by 7:30-ish. (The broccoli tasted amazing, a good sign for my sense of taste.) So I planned a short break from eating. My brain was feeling overwhelmed. I went to bed just to ward off problems, but ended up passed out until about 8:30. I came to in a hurry to get back to eating.
I sat down with my food with G, and I choked on water. I had been swallowing a capsule, but thankfully just choked on the water. The choking spell went on for quite a while. No horrific loss of oxygen, but I couldn't get a good breath for about a half hour. So, I finally ate my mush, very carefully around 9:30, but no more talking. (The timing of the whole day is a bit hazy.) I ate that, and then right after ate my biscuits. Several mis-swallows and rests to try to clear my breathing passage.
During this time, G and I were kind of watching a show together. He had headphones on, and I was reading the subtitles silently. It felt nice to at least have a shared activity. But my brain was fried.
I checked the outdoor air to see if airing out for a shower was possible, but it was smoky. We were both relieved, because my brain was so overwhelmed. I ended up passed out again from 2-4:45. I'm just running the AC now, and still not ready for bed. A lot of symptoms are just cranking up again (5:30), like the itching and coughing and heartburn.
So, it's better off that I didn't shower today, but I feel disgusting, and I'm really hoping for tomorrow. I don't know how when my brain is so easily overwhelmed.
* * * * * * *
July 13
Well, I haven't updated, because I feel I've plateaued. And plateaus are boring.
In terms of the cough, it's feeling more like my pre-Covid cough, which was pretty terrible. Irritated, asthmatic cough. Really nagging. The part that's still worse is the severity of the post-nasal drip. But the cough is less productive now.
Then, there's the dysphagia. I've had a few more choking spells, mostly on water. They are scary, exhausting, head-exploding, and they dysregulate my swallow reflex for a while.
Food, I'm still eating puree as my main meal, although I'm eating biscuits and broccoli too. The biscuits are the trickiest food I eat. They require full focus, tiny bites, and no talking at all to not choke. They also produce excess mucus, but they are solid calories that I need in my day. The mush is going great. I've gotten used to it. I can eat at a normal pace. Easy to chew (obviously), easy to swallow, and easy to digest. I would need to eat quite a bit more to meet my pre-Covid portions, but I eat a whole Magic Bullet full each day.
Bowel and bladder dysfunction/dysregulation continues. I also feel there's been a distinct weakening, causing more problems with urgency.
There's still the sensory overload and associated neuro episodes (migraine with brainstem aura and disordered consciousness). I'm still avoiding sound and overall managing my sensory load. I am so tired of it, but the times I have pushed it have been terrible. My auras are currently happening usually between 3:00 and 5:00am or longer. It really disrupts sleep, of course. And it is absolutely awful to go through. I haven't had to use the AC today, so maybe that's why I'm conscious to write.
My joints and body pains have regressed to their worst state. My upper and lower body mobility are both terrible. Mom comes by and helps me with everything I can no longer manage on my own.
Finally (maybe), the itch that has taken over. It has been really miserable the last week or so. It's all over my torso, especially my psoriasis plaques, but also my entire back. With my bad joints, I can't reach to scratch. And even using the back scratcher hurts my hands too much. The itching is terrible, because it flares when histamine levels peak...the overnight hours. If I wake up for any reason, I have so much trouble getting back to sleep from the itching. Anything that prevents restfulness and sleep is a big deal. I really hope this one is a phase.
My body is just screaming for an antihistamine.
Sleep, I guess, is the last bit. Other than the first terrible, high fever, manic night, I was sleeping well during the infection. I woke up in such pain, but I slept long hours and easily got back to sleep. I am not sleeping well anymore, due to both the itch and the pain. But my schedule is still totally a mess.
I have no idea when some of this will improve and what can improve. I would hope the fried brain problem will ease off gradually, and I'll be able to return to actually being able to entertain myself. I would assume my sleep schedule can return to normal with sleeping less, but it'll take time.
I hope today was especially bad because of the storm, because pain has been through the roof. The rest, I'm just not sure where there's the possibility for improvement. I hope I can return to Spanish class one day.
I'm going to sign off, because my head pressure is increasing and ears are ringing and I'm nauseated, and I'm so afraid another neuro episode will strike. I will go try to rest my brain in every way and hope to get a night off from those attacks. At least I'm very grateful for the mild weather and fresh air tonight after a stormy day.
July 14
I guess I'll just start writing my diary again instead of email updates. As far as I can tell, recovery from Covid in the general sense is over. And I'm left more broken than before, of course. Covid had typical symptoms at first, but then just amplified all my usual problems and added a few new ones. There was the brief reprieve in the first week where my joint symptoms decreased significantly. It's when my fever was 102-103, and my theory is that my immune system was so busy fighting something real that it temporarily forgot to fight me. Despite how it messed with my mind to suddenly stand to almost my normal height, get in and out of bed with ease, and use my hands more fully, I'm still grateful for any respite to help me through that terrible time. It does show what the world could be like with a powerful immunosuppressant, if I could even tolerate something like that or the risks that accompany it...which I couldn't. But oh, what a world.
It was also fascinating and devastating to see my life without my sense of smell. I haven't recovered from the sensitization that occurred in my obliviousness, and I couldn't be more grateful for how my sense of smell protects me.
Enough of the big picture. Today was hot and smelly. Mom came over and helped and brightened my day like usual. I ate my biscuits (twice), my mush (twice), and some asparagus and artichokes. I still need to almost double my portions of mush to meet my pre-Covid levels. I am not sure when I'll be able to do it, but my weight being in the basement doesn't help anything. I will keep pushing to eat more and get back to the needed portions. I did pretty well with the dysphagia today. No bad choking. Just very careful eating and totally silent eating of biscuits.
There was a storm tonight. I assume that's what hit me. I got hit with the brainstem aura around 9:00, and it lasted until 11:00. I was mostly unconscious. I could blame listening to my audiobook, but I prefer to blame strictly the storm, because I just need brief moments of something in my head other than my own thoughts.
So, I've listened very quietly to an audiobook or a show on my phone several times. I feel like admitting guilt to the crime of not being strict enough. Like I am lying, like I am cheating, like I am asking for it. I need to limit my time frame and truly listen to my body. If that head pressure or ringing goes up, maybe it's already too late, but I need to return to silence. I'm still nearly 100% on brain rest. I do have a couple conversations a day, one with Mom and one with G. Otherwise, I'm stuck with my own thoughts basically 24/7.
I'm still super exhausted and lethargic mostly. Although it's uneven. I just crash so hard into stupors that can last hours, especially after eating. But I'm not allowed hours, because I have to eat again shortly.
My pain is horrendous, honestly. So many body parts so painful and limited and weak. My knees are returning to pre-reprieve levels. Or worse. Feet killing me. My hips are tricky but not my biggest complaint. My sacrum is worst when I sit in bed a lot. My right shoulder is getting bad. My left elbow is getting worse. And my hands. My right hand is still worse, but some days it's close. My lack of manual dexterity/grip due to severe hand pain limits everything. It's mostly why I need so much help with just about everything.
The itching still drives me absolutely nuts. A gift from Covid to add to the list. Yes, my plaques, but mostly all over my back. I swear, it's gonna make me lose it. It's a huge factor in my decline in sleep. High histamine levels at night keep me awake, itchy, and heart pound-y. They seem to follow my body's adjusted circadian rhythm and peak in the last hours before sleep and when I want to be asleep. Enough that getting to sleep is hard and getting back to sleep is harder.
The AC is an asthma cough trigger.
The shower is an asthma cough trigger. Showering is becoming a bigger obstacle every time I do it, with the intense cough keeping me up at night and persisting the next day.
Both of these are now shown to be causation and not just correlation.
Another one is the gluten cough, which my friend, Kim, alerted me to just weeks before Covid hit. That extra layer of coughing...can you imagine how much worse that would have made Covid for me? I struggle enough with biscuits, but when I'm not choking, the gluten free oat flour ones don't make me cough at all, if that makes sense. They still produce excess mucus, but not that terrible cough. One less trigger is one less trigger! So grateful.
My bowel and bladder were acceptable to me today. Urgent, yes. But acceptable. The worst is still trying to get to the bathroom when I've just woken up, and it takes all my strength to get out of bed, and all of my power to make it to the bathroom with the excruciating pain and profound weakness.
I don't know when my schedule will regulate. I would really need to return to monophasic sleep, which means not being awake all itchy and heart pound-y from 10am to 1pm. I don't know when that will be possible, because I can't control the itching and histamine levels at all.
So, with all of this, I don't know when I'll be able to return to Spanish class. I miss it so much. But feel completely unequipped to even consider it right now.
Covid took more from me when I already had so little. I'm not surprised. Just frustrated and anguished.
Well, that was more than just today. More like everything. But I'm trapped with my thoughts! Gotta go turn the AC back on, cough uncontrollably, scratch my skin off, and try to prepare the bedroom for another warm and smelly day tomorrow.
July 15 Today went mostly as expected. Woke up on the early side at 2:45pm after a biphasic sleep. Made a mess while blending my mush, because I can't close the blender tightly enough. Managed to eat all my biscuits, all my mush, plus artichokes and broccoli. Not a lot of breaks. I have the heartburn to prove it. My left elbow is worse today: really hard to bend, which is extra limiting. For example, I hold my toothbrush with two hands to brush, but my left arm had trouble reaching most of my mouth. I'm also struggling to rotate the arm and wrist internally or externally without too much pain. It's within my forearm as opposed to a joint.
I mostly rested my brain until time with hubby could begin at 8:00pm. We made the most of the situation. We chatted while I ate mush and broccoli, because those don't make me choke easily. Next, he helped me cook quinoa, and while it was cooking, we ran from the AC, hid in the bedroom from the noise, and played a game. (How Well Do You Know Me type of game)
Then, while I ate my biscuits silently, we put on a show. We opted for the laptop since it's less stimulus than the TV. We made it through 2.25 episodes of Party Down before the warning signs began. It's further than we thought we'd make it. I started compulsive yawning, and sound started getting really loud.
So we called it and retreated to our areas. Him to finish watching Aliens with headphones. Me to inevitably suffer through a brainstem aura. Sound was so loud, I had to close the bedroom door despite the need to cool it. My heart pounded loudly. I was unconscious pretty much straight from 2-4:45am. I came to violently with aggressive itching, urgent toilet needs, intense heartburn, and a strong feeling of nausea. There was such a daze. At one point early on, G checked on me, and I couldn't make words. My head pain is just settling in. Above the temples and in the face, jaw, and teeth. A monster migraine with pain and nausea so intense. Also a pain in my sternum with each inhale. My sacrum/tailbone are killing me from hours immobile on bed. It's still hard to move.
I used up every bit of brain power I had today. And what better to use it on than quality time with my hubby? It feels horrible right now, but we all know the night could have ended up like this anyway, for any reason. My sleep will certainly be delayed/disturbed, since so many symptoms are just peaking now, having been dormant while unconscious. Itching and heart pounding like crazy. First thing I did was look for my plastic fork, which I use to scratch my poor itchy back. Hoping relief can come soon, and my body can calm. It's already 5:30am, and I'm no where near ready to sleep.
July 16 Holy crap, I had no idea what I was in for when I last wrote. Life became a living nightmare. I finally tried to go to sleep at 6:30, and Gustavo helped me with the usual bedtime stuff. But every sensation my body knows how to make was maxed out. Allodynia/central sensitization/pain crisis. It was every pain I ever have times 10. (Trying not to be hyperbolic. But it can't be understated.) I tried to read on my left side, like usual, but my entire left arm from shoulder to hand was in agony. I rolled partially onto my back, abandoning my book, but when I woke up, the arm felt even worse. It was around 11am, and I was absolutely wailing in full-body pain as I hobbled my way to the bathroom in a usual wake-up rush. Thank goodness G was home. He's never home at that time, so I was so fortunate. He helped me back into bed through the wails of pain, helped me rearrange my pillows, located my meds for my next dose, and tucked me in. I was incapable of any of that alone. I couldn't move a pillow. I couldn't move myself without screaming.
Anyway, I couldn't possibly feel sleepy, so I attempted to read on my right side this time, since my right arm is comparably less damaged. I tried and did for a while, unfortunately giving myself a corneal abrasion against my pillow in the meantime. I don't know how I slept, but I woke up in more agony. Left arm was slightly relieved, but this time right shoulder and arm were excruciating.
Another wake-up trip to the bathroom while crying out in pain. The pain of supporting my weight through my arms was so much. But so was the pain in my legs/knees. I couldn't distribute the pain in any non-torturous way. This time, I was alone. Luckily, the degree of torture was down by about 15%. I managed to get dressed and grab my biscuits, which I ate on my bed, in the dark quiet.
The rest of the day has been survival. Avoided all sound besides the occasional sound of G's or my voice. No pushing any boundaries. Oh, and with a terrible corneal abrasion that I needed to bandage myself. So, I couldn't use my ears and I had to minimize using my eyes, since my eye and nose would cry if I moved them.
With G home on the earlier side, I had help and company. He was able to watch a movie with headphones while I ate or sat in a stupor...but mostly ate. I ate biscuits, mush, a whole veggie plate, more mush, and more biscuits. The only difference being that I ate broccoli, asparagus, and artichokes all in one day. It was a lot of food, and I have had heartburn. But I'm still probably around 80% pre-Covid calories. I don't know how I ate so much. But I'm giving my best effort, despite the challenges.
I only had one dysphagia spell today, on water again. Only lasted about 10 minutes, and I was able to return to my food, although eating felt more precarious again with my throat acting up.
My plan is to no longer lie on my side at all. It will be hard, because it's my system for inducing sleepiness. I read on my side and then roll to my back when I'm sleepy. It's harder with my elaborate system of pillows to support my wrecked legs, but it's been working. Now, I will have to try to read on my back and sleep on my back. There's no real good neck position for it, and I'm not sure how it will go. I can't do audiobooks because of the noise of the purifier, my sound sensitivity, and my sleeping earplugs.
I can only hope today goes better, since I babied myself and my brain to the max all day. Everything still hurts. My eye abrasion is not yet healed. My left arm hurts more than it ever has before. Wrist rotation hurts worse. I feel dread about sleep going so wrong again, afraid my shoulders won't be able to take any position. But I have to sleep flat. It's the only thing that differentiates waking rest from sleep. I hope it works out. I have an ongoing migraine but not a new one, so maybe it will be tolerable. I'm so scared of that feeling of central sensitization, where every pain is amplified, and non-pain sensations are interpreted as pain (like cold temperature or the wind or touch).
I got a new pair of ear plugs that just might help with the AC/purifier noise.
I don't know when I'll try sound again, but I'm not real anxious to see the possible outcome. I'll probably give it another week.
The pain is spiking again here at 5-6am. I am sorry and sad to admit it, but this pain I've been experiencing the last 24 hours is suicide level pain...particularly in the late nights/overnights. Meaning if this pain were to continue for a certain duration, one could no longer take it. I cannot find a position to be in without countless pains. Normally cushions and pillows and modifications can ease it. But not at this level. It is excruciating. There is no future like this.
July 17
Cognitive overwhelm... It's become clear to me today that I am not only getting sensory overload to sound. I am also getting cognitive overwhelm to thinking tasks. It became clear when I went to play my daily Sudoku games. I normally play for an hour or more while watching a show. It relaxes me and helps me pay attention to the show better too. Today, I realized my brain was showing signs of overwhelm from my favorite relaxation app. Pressure over my temples, ears ringing, sudden absolute exhaustion. I stopped, and it relented. I don't believe I've experienced this level of cognitive impairment. There is so little I can do with my day right now. With no audio input and no simple games, I don't know what's left. I've read all of Facebook, which apparently doesn't take cognitive energy. haha.
I believe that my super cooling of the bedroom near bedtime has probably contributed to my pain spikes. Not caused. It's just that when I have allodynia, cold=pain too. Cooling the bedroom well before being sealed up and heated up is a really key tool for me. I can only ever get it down to 74 at the absolute lowest, so it's not actually cold, just cooling, blowing air. So here at 4:15, I haven't run any AC yet. I'm going to save it for the last possible moment and deal with the heat if needed tomorrow. It will get much harder when it gets hotter again.
After my horrific pain night Saturday, where I lost my ability to lie on my sides due to arm pain, I also lost my ability to read in bed. Reading is how I get sleepy and how I distract myself from everything until I get sleepy. Lying on my left side is also really good for my GERD and my heart palpitations. It's a very calming position. But not when it turns your arm into a source of agony. So now, I'm trying to find another way.
Last night failed. I tried with a tiny extra pillow behind my head, a pillow on my chest, and the Kindle on top of that, all lying on my back. But I couldn't see the book, the light was in the way, I had to just hold the book up, and my head was at the wrong angle.
I have one more approach to try tonight, but I may be out of luck. And of course, I tried an audiobook when all else failed last night, and I was in agony and not sleepy, but sound cannot calm me right now. Only activate me. Just a few weeks ago, in early Covid, I did use an audiobook to help me fall back to sleep, and it worked great. But I have a different brain now.
Air in the apartment smells/feels so moldy today. Minimal ventilation. Asthmatic coughing all day. I finally just now got fresher air coming in, and the cough has basically stopped.
I was doing my best to accept the brainstem auras as an inevitable part of my near daily life. But that was before the lasting effects of torture level pain associated with central sensitization. (I say lasting, because both arms are so much worse since this happened.) Now I fear them again, and I will do anything to avoid the cognitive overwhelm that pushes me toward it. That still means zero audio input for who knows how long, and now minimizing cognitive "strain" as well. Mental exhaustion is one thing, but this is a whole different ballpark. (I made a sport analogy.) I was willing to push it before. Now I'm terrified to ever feel this again. It truly feels that my pain/mobility has worsened again with my arms now. Like a full-on progression. I can't brush my hair, for example.
I think the only thing I can try is pacing. It feels like pushing a brain that should only rest, but if I can listen to 5 minutes of something a couple times a day, maybe that's better than nothing. But maybe that's really stupid. I just literally can't live with that happening again. I mean, it's still ongoing but less severe than it was. But I cannot take that severity again. I feel I know how to avoid it, but how to maintain that level of avoidance?
I need to post these blogs, but I don't know when I'll be up for copying and pasting and including the Covid email updates.
This fresh air is amazing. I wish I could leave it open all the time. The mold and indoor VOCs would kill me slower.
July 18. My weight is not recovering from the Covid hit yet. This severe weight loss and muscle loss is known as cachexia. It is generally a late stage symptom of serious disease.
https://www.medicalnewstoday.com/articles/315312
My BMI is currently a perilous 14. The loss of musculature is devastating, but especially for someone with EDS. With EDS, your ligaments and tendons can't hold you together, so you rely on your muscles to pick up the slack. Without the support of connective tissues or muscles, I'm literally being ripped apart when I exert force. The immune attack on my joints has caused such movement-limiting pain, and it's a vicious cycle, because that leads to the worsening of EDS symptoms. And all of this degenerative. The cachexia is also associated with edema, like I've got on my feet and ankles.
But this makes it sound so straightforward. This is not simple case of "Use it or lose it." My bladder is the perfect example. Like any normal human being, I exercise all muscle necessary throughout every day to hold my bladder to the best of my ability. It's not like I was on a catheter for a month, and those muscles never got worked. They're worked throughout the day every day. And yet, the weakness has developed, practically overnight the day the fever spiked. Those muscles are weakening despite constant use. The same goes for my leg muscles. I never stopped walking and sitting down and standing up throughout each day. I barely reduced my steps, albeit with a walker. And yet, muscle wasting. It's a complex disease process happening in my body beyond my control. And same goes for the weight loss. You can't necessarily eat or exercise your way out of this disease process, thus it feeling so impossible. But that should help me feel a little less guilt! And I feel constant guilt.
So how did I develop an autoimmune disease and have it progress and degenerate to such an advanced stage so quickly? My body having surpassed its tolerance for treatment/intervention after a lifetime of aggressive and invasive interventions is a big one. Lack of ability to tolerate treatment allowed it to flourish, although I've had signs for years. But no immunologist ever caught anything, probably because they focused on allergies and mast cells (or just called me crazy for claiming fragrance reactions.)
Then, there's the mast cell activation/chemical sensitivity component, which is enormous. Unchecked mast cells (again due to lack of tolerance for treatments) have allowed my body to develop reactions to a wider and wider array of triggers of every type. The range of things my body sees as an attack or a stressor is insane at this point. But all of those stressors and exposures and experiences that have challenged my body have led to the most minor things causing progressions. A car ride being the one I think of often. But watching two episodes of a TV show is another one. The car ride March 28 setting off so much of this chain of events. The tv watching causing a neurological episode that triggered central sensitization and led to the decreased ability to use my arms is another. Stressors are widely known to progress autoimmune disease. Covid was, of course another one. The list is endless, because as I said, my body thinks just about everything is a stressor.
I obviously don't know a way out of this tailspin. If I did, I would do it. But I see what my body sees as an attack, and what I experience as an attack, and I simply cannot imagine a world where I would try heavy duty medicines that are extremely rough on much hardier bodies. This is an area that brings even more guilt, like I'm letting everyone down by not seeking out care, despite a lifetime of experience showing that it can't help, but it can make your life even more hellish, with no one to help you out of that new hell.
So where does this lead if I continue to lose independence with no access to nursing care? Those are questions we don't ask.
These are the types of things I mostly avoid thinking about, because they are terrifying and that terror doesn't serve me. But I am not ignorant to them.
So, today. (July 18) Today, Mom and Andy came over. They brought a dog to lift my spirits after that hellish weekend. Andy worked on sealing up the worst parts of our bathroom with a waterproof tape to try to lessen the exposure, since real remediation is not possible. I didn't handle it well. I should have hid in the bedroom with my purifier. But we did have fans blowing in outdoor air. Nothing really should have been stirred up by the process of drying and applying tape. But that bathroom is poison to me, and my asthma was triggered. It's eased a little, but no access to fresh air yet tonight to help me feel better. I smell mold more than ever tonight. But the stupid outdoor air has been full of laundry fumes for hours. So I'm just surviving with an irritated airway and so much coughing.
Since the company and the dog (don't blame the sweet dog!) and the fans and I guess the bathroom was so much for my system, I haven't done anything since, barely. I ended up losing consciousness for about 20 minutes so far tonight, but there could still be more. So just writing this is apparently pushing my brain. Going to keep it mellow and hope for fresh air access soon.
I got new ear plugs to help me minimize sound and give my brain better breaks. It was no easy task to find some that fit my tiniest ear canals, but I found some (Happy Ears). I don't have the longest endurance for wearing them, but they do provide nice breaks.
My heartburn was so bad from eating so much food in so little time, but I know I'm still coming up short on portions. And at 3:00am, I'm hungry. But GERD won't let me eat more today. Just have to try again tomorrow.
Sleeping on my side is still definitely out since this weekend's flare up. I don't really see it changing either. I did manage to read during my sleep break, although it was very complicated to set up reading on my back, and apparently, my vision is way worse than I thought. Somehow, lying on my side with the book 4 inches from my face was no problem. But it's a lot trickier lying on my back, and my vision is what I fought with most. I think one eye reads the top of the page and the other reads the bottom? I have no idea. And neither do the eye doctors! I turned the font up quite large, larger than I've ever needed before, to try to help me read. I had multiple pillows on my chest with a device rest on top of that. And then a flashlight in my armpit. Like I said, so complicated when all I want to do is curl around a body pillow on my left side and read however I normally do with no effort.
But it did help me pass the painful time enjoyably and distract me enough once I could get into the story. It takes 45-60 minutes on an average day before I get sleepy again. So I hope I can keep figuring out how to read in that time. Honestly, I have so little I can do just in life in general, and all my coping tools are being ripped away.
I sure hope I can get back to tv and podcasts and iPad games and all that soon. Whenever soon may be. For now, the only approach seems to be extreme pacing. Monitoring for signs of overwhelm and stopping all activity at any sign. A really good one is my ear ringing getting louder. That, along with head pressure and sound sensitivity seem to be the signals I must listen to and obey. So maybe I can play a silent game for 10 minutes and then rest and do nothing. Or I can listen to 5 minutes of an audiobook...and then rest and do nothing.
That's my approach I'm trying out. I'm trying not to be so hard on myself when I unintentionally do nothing but stare for 45 minutes when it was meant to be 5. The problem is that I'm probably delaying my food, which is downright dangerous now. The balance of my body's need for sustenance and rest is an impossible one. Because you can't eat at all if you are unconscious for hours. But I am hard on myself. I constantly feel that I'm failing myself and my loved ones, when really there are processes beyond my control. I just don't want them to have to watch any further decline, and I can't really face it myself. But I'm not failing. I think I need that reminder.
Oh, and why can I read overnight for up to an hour straight? Because there's no sensory input, and more importantly, I'm drugged. Even after all this time and loss of tolerance for meds, the reason I'm still here is my access to tolerated brands of the drugs that calm my system in the overnight hours. They aren't all-powerful, but they can calm pain, itch, agitation, cough, even heartburn, and my potent case of insomnia, because they calm the system, including the mast cells. Obviously, their job has gotten bigger with such powerful symptoms peaking overnight, and there's only so much they can overcome. But nothing is possible without them. I normally ration and underdose, but I have been needing full doses the last week or so, taken in biphasic pattern again, because they don't last long enough if I take them all at once, and then I've only slept 4 or 5 hours.
Parts of the day, when Covid was active, I slept so hard, it was amazing. I barely needed my sedatives. And of course, there was that brilliant period where my joints were improved. I wish those could have stuck around instead of me getting worse, but I wasn't delusional. Anyone that knows my story knew that Covid would hit me hard one way or another, and there would be some major lasting effects. This body was pathetic going into it. It wouldn't come out unscathed.
Brain getting so tired. Time to close my eyes and do more nothing, my favorite pastime, so it would seem.
And oh yeah, let's not talk about the real dark despairing type of stuff in real life. This was already too much thinking about it.
PS Laundry fumes continue at 4am. All night. No clean air access all night. I may just be trapped with the irritating moldy air I've got. Although worse is to come for air quality with Wednesday lobby stink-bombing and then warmer weather. So I'm enjoying my time in the recliner while I can. It was "fun" while it lasted.
Ugh. Waited through 7 hours of terrible indoor and outdoor air. Thought I got fresh air at 5:35am. Quickly let in strawberry cigarette smoke that filled the apartment. That means I'm sealed in the bedroom without having had any AC access into here. Hard to sleep at 81-82°, although I do it a lot. I just normally start cooler. Plus, I feel like I blew my brains out running the fan on high, the AC, and both purifiers on high briefly. My ears and face are killing me. The AC is running, but I can't let any air into the bedroom. Such terrible air all night. I'm so done. Hope I can sleep, cause I can't stop coughing, and so much of me hurts. I can barely lift an eight ounce glass of water tonight...with both hands. Feels like it's tearing me apart. At least that put an NSYNC song in my head. (IYKYK) The soundtrack my brain chooses to play during these weeks of silence is always interesting. (How did the song from the movie Big Daddy where the kid wants to hear the video over and over again land in my head? From where did you come?)
July 19
I've been editing this blog for 3 hours, so I'll actually be brief.
Itching has been slightly less. A gift from Covid may be an elastic allergy. But I don't know, as the rash is ongoing. It's certainly irritated by anything that squeezes.
I don't know how I'll ever shower again with my cranked up sensitivity to the bathroom moldiness, particularly post shower, but truly all the time. The asthma is unbearable. It's been a week, and I know I'm gross, but I can't fathom trying again.
It's clear from my notes that bowel and bladder problems got badly flared up by Covid since day 1. I think I'm left with greatly weakened pelvic floor muscles, and building muscle is not something my body does much (cachexia). So frequent, urgent bathroom trips are just part of my everyday life now.
In so many ways, my life is worse than before Covid. But let's be real: it was absolute shit beforehand. Several problems are amplified and progressed. But I have a progressive condition. That's what it does.
The biggest life changes have been: the intolerance of sound and cognitive overwhelm, and more recently, the decreased use of my upper limbs. The sound and cognitive impairment, I blame on a constant migraine state that flares up worse at times and has a hair trigger. Constant migraine states tend to calm eventually. I have never experienced this degree of prolonged inability to listen to anything or even play simple games. I've compared it to a TBI before, which is quite apt. I really miss my shows. Really. I'm being left behind. I care about my stories. In addition, I haven't been able to hear Spanish. That's been at least an hour a day for the last couple years before this. So I'm afraid that all this brain fry will make me lose some of my progress as class goes on without me.
The upper limbs were going to happen anyway. No doubt. They just happened now. It's my left arm all the way from shoulder to hand and especially elbow and then my right hand and shoulder. Putting the requisite weight through my arms to support myself on my walker can be truly excruciating. Peak pain hours are the last few hours before sleep, and then all overnight, and then the first hour of the day (So 2am to 4pm). So getting ready for bed is so hard, trying to get comfortable in bed, getting up during each of my two wake-ups to go to the bathroom, and then getting dressed in the morning. That's when most screaming happens.
Although, my left knee has really joined the party, having been my good knee before. Now, the bubble pops when I go to sit down are horrendous. I can't do it silently.
Okay. brain is throbbing. This was dumb and long and too much mental energy, but it's done. My record of what it's been like. I'm sorry I haven't updated personally. Obviously, there are no brief answers as to how it's hitting me and how I'm coping.
Going to go hide in my bed with my ear plugs and do nothing for these painful hours before sleep. And hopefully stay conscious/not paralyzed?
Thanks for reading. Thanks for caring. Sorry for typos and repetition.
