6:30 am
Brownie woke up when my daughter’s boyfriend left for work. I told him it’s too early for us to get up and he has already missed the chance to say hi. We fall back asleep.
7:00 am
Before I leave my bed I put on compression socks. Take Brownie out, climbing the stairs back up to our second floor condo first thing in the morning is often the highest my heart rate gets all day. Give the dog his medicine, convince him to eat something, hydrate myself (2000 mg sodium via a solution of table salt and lemonade mix that I keep in the fridge) and take my pills that don’t require food.
In order to drop him off at daycare I do need to change out of my pajamas. In the winter I used to throw on pants and then a jacket over my pajama top but it’s way too hot to put on anything over any other layer today. I was “tank top with a built-in bra” level of tired. Two separate articles of clothing felt like too much. Got to daycare and there was someone with a dog in front of me who had been waiting for a little while but we didn’t have to wait too long for someone to let them in.
7:50 am
It’s nearly 8 and I surprisingly feel okay so I head to Walgreens to pick up my prescription. This prescription has been yet another complication. I submitted for the refill on Sunday when my parents filled my pillbox for the week and we realized that I only had enough pills to last through tonight (Thursday). The site said that there was one to two day shipping available which was perfect, plenty of time. On Tuesday it still hadn’t been filled, let alone shipped, so I called and canceled that request and submitted a new request to pick up my prescription myself. It wasn’t ready until last night which was okay because I still have enough pills, but stressful because tonight is the last pill.
I arrived in the Walgreens parking lot three minutes before eight, waited in a parking spot for three minutes and then tried to go through the drive-through. It wasn’t open yet. By this point I did have a headache [note: every time Ii say that I get a headache, it actually means that my headache increased enough that I noticed it’s worse] and realized that I should’ve done my normal routine of get up, hydrate, and lay down for a little while. I can usually get away with dropping the dog off at daycare and going back to bed because it’s only a three minute drive. This was a little bit too much but as long as I was there, I was going to get the pills. I parked, walked inside, checked my phone shopping list, decided I didn’t need anything, headed straight to the pharmacy. Thankfully the pills were ready and I was able to head back home, put in laundry, put back on my pajama pants and commence resting in bed.
8:20 am
Check my phone responded to some messages both personal and for work. I regularly work from bed now. I used to be someone who only slept in their bed and used the couch as daytime laying down space, but I’ve realized that the extra space is nice when sharing the bed with the dog or I just need more space to put things down like propping up my tablet.
I was all ready to get up by nine because the workers were supposed to arrive to paint the deck but I checked my email and discovered that at 4:45 this morning they rescheduled for next week! Spent half an hour playing a game on my phone. Then I was feeling more tired, so I put the phone down and fully rested for a while.
11:00 am
Got up later than I usually do. When Brownie is here he’s ready to go for a walk at 10 o’clock. I moved over the laundry and started the dishwasher. Got distracted and ended up on the couch. I still haven’t had breakfast or taken the rest of my morning pills. Check in with work again including my email this time and decide to get things done like submitting receipts. Find an article in my email that I had wanted to read and launch it in speechify.
12:00 pm
While listening I finally realize that food is necessary. I make breakfast, take my pills and hydrate with electrolytes again. After eating I feel more tired than I have all morning and remember that digesting means lots of blood going to my stomach and being unavailable for my brain. @WearyBonnie on Twitter once described it as allowing her body to deal with the indignity of digesting food, which I now think of every time I feel worse after eating.
Lay on the couch for a while to recover from eating. Checked my email and saw that I had notifications in the online patient portal where I receive messages from my doctors. I was very excited because I’ve been waiting for over a week and a half for results from my MRI. My doctor promised to call if there was anything of concern so an online message meant all is well. When I opened the portal the first message that I saw was one informing me that my neurologist is leaving her practice. This is devastating news because it took me 10 months to find a neurologist, willing to even give me an MRI, something that should be standard practice for anyone who has had ongoing headaches. She is the third neurologist that I’ve seen and the only one who actually listened to me. I do have an appointment with a neurologist who is associated with the Covid clinic but it’s during the week of my work retreat so I had been hoping that I wouldn’t need it. After clicking around some more I find out I did also receive the MRI results. There are a lot of words that I don’t understand and a referral to a pituitary specialist. [July 28 update: there’s a 4 mm growth in my pituitary gland that seems like a cyst, I’ve already had follow up tests and appointments and it all looks fine.]
I called my parents to give them this update and complain. Then I called the long covid neurologist office to reschedule my September appointment that I won’t be able to make and do now need. Get transferred a few times before speaking to someone who can schedule me. Of course, the next available appointment is in January. I also email the Long Covid clinic coordinator to see if there is anyone else that I can see sooner. This level of hoop jumping is my new normal.
2:00 pm
Realized I was still tired because I was hungry again. Having a body is so much work! Had lunch and then headed back to the couch.
3:00 pm
Put on pants. Five minutes of rowing, slowly. This is my second time back on the machine since getting back on beta blockers and learning that I need a ton more sodium than I was getting to stay hydrated. My office has become my exercise space because I mostly work from bed and the couch. This rowing machine does fold up so eventually if I get back to working at a desk, I will be able to tuck it away in the corner.
3:30 pm
Moved around the things that I had moved off the deck so that they could paint. I only brought back up the one chair that I like to sit in and the doormat. And then I had to move some flower pots to a spot where they would get sun, since they will be off the deck for almost a week.
Lay down on my bed to rest for a while before attempting a shower, dictated most of this post.
4:45 pm
After showering, I lay down again. It would be possible for me to shower without needing to rest, if I was willing to take cold showers, however, I am not. So instead I rest, shower while seated on a stool, and rest again. I need to clip my nails today, which is not a fun task because it requires detailed focus of my eyeballs which they do not do without protest, but it is a task I would rather do myself with consequences than ask for help. I end up with the increased headache and nausea and return to laying down.
5:00 pm
I meant to do a variety of things that are easier to do when the dog is at daycare, such as sweeping, watering plants, and packing. However, I don’t get full control over my days anymore. Having an energy limiting illness requires budgeting physical, mental, and emotional exertion. So finding out that my neurologist is leaving, realizing I need to make new appointments, making phone calls, sending an email, and processing all of that left me with less energy. It’s possible to do all of those chores when Brownie is home so that is what will happen.
When I stand up I feel a bit lightheaded so I drink half a glass of electrolyte mix. Say hi to my daughter’s boyfriend on my way out, get the dog, it’s still hot out! Say hi to my daughter and her friend/coworker when we get back.
Empty the dishwasher but leave the silverware caddy for someone else because sorting silverware is way too painful. Drink the other half of the glass of electrolyte mix. It’s starting to rain, thunderstorm, and I’m feeling it. My head hurts more than usual and I’m nauseous. Sit in bed and fold the laundry, another task that aggravate symptoms (matching socks in particular) but needs to get done.
I heard a beeping noise that I had heard earlier this afternoon too and I assumed it was the trucks doing work outside. I asked my daughter’s boyfriend if he hears it because tinnitus is one of the many symptoms that I have. He does and thinks that it’s coming from downstairs. Of course the downstairs neighbors are out of town – not just that but out of the country. He checks the attic while I check our downstairs storage closet. In addition to tinnitus I also have no directional hearing because I’ve never been able to hear out of one of my ears. He has to come down and determine if the sound is coming through the door in the storage closet that leads to their unit. It is and so I text my neighbors to let them know. Of course by the time we have completed this process it is pouring rain and we have to run back upstairs in the rain (our access to the storage closet is outside). Just one more thing to make my day both exciting and exhausting. The neighbors call back a little bit later and we determine that it’s probably a smoke detector with a dead battery. It doesn’t sound like an actual fire alarm is going off and it’s been going off for hours now, so if there was a fire, we would know!
6:30 pm
My family doesn’t live super close by and they want to help me so they signed me up for a meal delivery service (local friends: it’s from Clover and is fantastic). Every Wednesday I get a box with soup and a side that lasts me for two dinners. I heat up the leftovers to eat tonight. Bonus: soup always helps me reach my daily sodium goal.
I was feeling impressed that Brownie wasn’t barking at the thunder and realized that I’d forgotten to give him his pill. Usually he gets it before dinner but since he hadn’t finished his breakfast I didn’t measure out dinner and just put out the leftovers. My brain is completely dependent on habits to get things done.
7:15 pm
I’m still feeling lightheaded and now I know it’s not because I’m dehydrated because I’m over 10,000 mg of sodium for the day! Well I guess I could be dehydrated if I haven’t had enough water to go with that much salt? Still figuring this out. I will drink water and rest and wait for the storm to pass from the couch. Spend the time listening to an audiobook.
8:00 pm
I’m feeling hungry, it’s new to feel hungry! I guess getting extra hydration is really helping symptoms. Eat some ice cream and go back to cuddling on the couch with Brownie.
9:00 pm
Leave the couch to do some stretches on the foam roller, take my pills, and convince Brownie to get up, go out, and take his pills. He was so worn out from daycare that I had to coax him with peanut butter to get up off the couch! He’s going to be wonderfully tired tomorrow, and will just cuddle all day.
Getting ready for bed involves setting up everything I’ll need- a glass of water, a cooler with two types of ice packs, a heating pad, and compression socks for the morning. Taking off my compression socks is the last thing I do before laying down. Once I’m in bed, I set up with a heating pad on my back and an ice pack on my neck. I will check in with all the apps on my phone (including journaling, tracking medications and symptoms, and a cute app where I get to water a plant, ironic that I didn’t get around to watering my real plants but I will be sure to water my fake plant) until about 10 o’clock at which point I switch to a cold headache mask and my heating pad on my stomach so that I can heat my hands. That combination pulls the blood away from my head and towards my extremities, which decreases my headache enough to allow me to sleep. I listen to a 10 minute meditation and then drift off to sleep!
10:10 pm
I can feel my heart pounding. I’ve been laying flat for almost an hour and my Fitbit says my heart rate is 92. On my medication my resting heart rate is down to 64, also per my Fitbit. I’ve been doing my usual wind down and there wasn’t anything stressful in the social media I scrolled. Usually this happens when I overdo it during the day but I thought I did pretty well today? I don’t think this has happened since I got back on my beta blocker. Hopefully the meditation helps calm things down and I can fall asleep.
I feel both thirsty and like I have to pee. Why can’t you use the liquid in my bladder body?? Went to the bathroom (TMI: my pee was clear, which is supposed to be a sign that I’m fully hydrated) and drank some water. Going to try the meditation. My heart is pounding less, and down to 87, which is impressive since I just got up without compression socks!
Tina Cardone 