Hey everyone! One of my best friends suggested that I take you all with me for a week of doctor visits and the other parts of daily life with EDS and dysautonomia. It might seem a little bit weird to those of you who remember how much I was doing last year. The stress of school and constant work sent my body into a huge flare, and I am now very limited. It is a big change for me and my family, and it has been hard to learn how to adjust to my new energy levels. Anyway, here is a week of happenings in the life of someone newly diagnosed and managing two chronic illnesses.
7:30 AM: My wake up call everyday. If I don’t stick to schedule, I won’t sleep, and sleep is VERY important for conserving spoons! Shortly after my alarm goes off, I get dressed and head upstairs for breakfast and to rest a little bit. Even getting dressed and ready for the day is tiring, so I have to plan in little breaks throughout my day. I like to start my day with liquids because my stomach is always a little slow at the beginning of the day.
8:30 AM: I read a book for a while until I feel good enough to get up and do something productive! Today that productivity is making vegetable broth for a soup recipe I want to try out. By the time the broth is simmering on the stove, I am pooped from all of the chopping and peeling. Back to the couch for my heating pad and a chat with a friend!
10 AM: Hungry! I have not had hunger signals in weeks, so this is always a welcome surprise! I can’t tolerate many fruits or veggies yet, so today’s recipe is one banana, ½ cup of homemade almond milk, ice, coconut oil, and a small amount of maple syrup in a smoothie! I drink my smoothie and watch some Good Mythical Morning on YouTube to rest up and get ready for lunch and my MRI.
12:30 PM: Check-in and Registration! I just had to fill out a bunch of paperwork and pay for the procedure. Then I walked down to the radiology clinic and filled out more paperwork! I had to verify that there was no metal in my body because the machine is a big magnet.
1:00 PM: I got called back to talk with the technician. He reviewed my information and had me change because my sweatshirt had a metal zipper on it. I wore sweats and warm socks, but I wasn’t thinking about my zippered shirt! The technician was nice and gave me a scrub shirt instead of an uncomfortable gown, so I was happy. He took me back to the machine, which just looked like a giant tube! I laid on the table and he covered me up with some warm blankets, gave me hearing protection, handed me a bulb to squeeze if I got too nervous, and slid me in. The whole procedure was painless and quick. It was really loud, but listening to the radio through the headphones he gave me really helped. I couldn’t see out, but I could see the reflection of the window on the top of the tube. A couple times I almost fell asleep, but then the sound of the machine would change and startle me. Before I knew it, it was over, and I was sent home! It was the easiest test so far!
3:00 PM: The soup finished, so all I had to do was blend it up and portion it out for the next few days for the freezer! Then I did the dishes, which is always tiring. It’s hard for me to stand for extended amounts of time recently, so the dishes are always a little tough. But it’s good to know that I did something nice for my family!
4:00 PM: Everything is done, and I am done for the day! I will spend the rest of my night eating dinner, bathing, and relaxing after a busy day. By the time 4 rolls around, I’m pretty much out of commission, so I’m learning to pace myself and plan events for earlier in the day. I’m hoping to conserve spoons for tomorrow by taking a bath instead of a shower tonight. Showers leave me tired and weak because of my POTS, and I can’t tolerate them as well anymore. Baths are the next best thing! See you tomorrow! J
7:30 AM: Wake up call! This morning I got dressed, even though I plan to rest for most of the day, because it makes me feel more normal! I also drank my usual shake and read my Bible. Last night, I ended up falling asleep around 9:30 because I was so wiped out from the day, but I still feel like I stayed up all night!
9:30 AM: I wrote to my pen-pal, called a few doctor’s offices, and I scheduled my next Neurology appointment. They are able to get me in tomorrow, so I can show you all what that is like this week too! If doctor’s offices can get me in early, I always take it. It’s much nicer just to have it over with. All I have going on today is a mental health therapy appointment. I started seeing my therapist for anxiety, but now I see her so that she can help me understand my new limitations and work a lot on self-care. It’s nice just to talk to her! Since I did so much yesterday, I’m really tired today. I am using my morning to rest and relax so that I can take myself to my appointment.
I decided to get the dishes done early so that I didn’t have to worry about them, but that was a mistake! All my limbs are shaky, and I have to take a nap. But that’s okay! I’m learning my limits, and someday, this will be easy for me!
12:30 PM: I made and ate lunch early so that I could rest before leaving for my appointment. I was a little bit hungry, but not quite yet. So now my belly is very tight, and I feel like I’ve eaten a horse. My back and chest hurt a lot because of all the build up. Ginger stimulates my stomach to empty a little quicker, and it helps cut down on the nausea after I eat. I love ginger chews and ginger gum, and I couldn’t eat even close to normally without them. This afternoon I have eaten lots of gummies and have been chewing the gum non-stop to get my stomach calmed before I go to my appointment.
3:30 PM: My appointment went well! I was able to calm my belly and get to and from the appointment safely. I am still in quite a bit of pain, so I am going to rest with my heating pad for a bit.
4:30 PM: I’m finally a little bit hungry, but I don’t want to spoil my dinner. Protein shake to the rescue! I also went for a ten-minute walk to help calm my aching guts! It is really hard to walk at the moment, but I know it helps me.
6:00 PM: I’m not very hungry, but I need to eat to take my medicine for the night. I try to have more liquid foods in the evenings as well because I am so full from the day, so tonight is carrot ginger soup that I made yesterday. Yum!
For some reason, I have a burst of energy, but I don’t really know what to do with it. I don’t want to overdo it tonight because I have two appointments to get to tomorrow, so I think I will just make a thank you card for a friend who sent me a get well package!
7:30 AM: Wake up, get dressed, and drink my protein shake! I also use this time to read my bible and a few other books!
9:00 AM: I have to take my little Chihuahua in to get his nails trimmed because he is a stinker. He won’t let us trim them without biting and squirming, and we’ve tried everything!
10:00 AM: I am back home just in time. Taking the dog really wiped me out! He is very annoying and stresses me out in the car, so I am ready for a rest now.
I did make a strawberry cucumber juice to sip on while I rest, so that I can get some extra nutrients! Juicing is my new favorite thing because it doesn’t hurt my stomach to digest, and I can get more vitamins in each day that I am usually lacking.
For the rest of the afternoon, I will be resting and eating to get ready for my neurologist appointment at 3:30!
I tried some yoga as a relaxation method to get my body into “rest and digest” mode after my lunch. It was very nice, and I am encouraged by the results so far. I plan to do it twice a week to start with, but I will probably do it more often when I have more energy!
3:30 PM: Neurology appointment! The rooms are a little creepy, but it went pretty well. The doctor basically said that my MRI looked pretty normal and that nothing jumps out at him on my spine, which is great! He said that he has not seen a true case of dysautonomia, and that I am his first. He referred me to a specialist, who I will see for all of my symptoms and a full panel of tests related to my nervous system. I am so encouraged and excited for this new doctor! I hope that this doctor can be my go-to for everything related to my dysautonomia, and I hope that he or she can help or at least have some more ideas for me to try!
I went for a short walk and chewed some ginger to hopefully get me hungry enough to eat dinner. I added more oil into my smoothie, and it filled me up too much! Thankfully, the walk and ginger helped, so I was able to eat dinner without a problem.
After dinner, I took a trip to the grocery store with my mom for some ingredients to make another new soup. I was almost too tired to bathe, but I know that I feel better sleeping if I am clean. It will be an early bedtime tonight, and I have a big day of resting planned for tomorrow.
I’m not sure why, but I had a rough night full of bloating and nausea. I think it was either the new food I tried, or that I just exercised too much yesterday, or both! I can’t really ever tell what the culprit is for bad days, so it’s always a mystery. But I’m going to compensate by taking it easy today and trying to stay on top of my eating, even if I don’t really want to. I’m thankful that I planned today as a rest day anyway!
Well, my plan of resting failed, as usual. For some reason, even when I know a rest day will help me, I decide to do something productive. Today I made two batches of soup for the freezer. I did end up eating normally today with only a little bit of symptoms, so that was good! But I definitely overdid it, and I regret it now. The hard thing is that just a few months ago, I could have done all of this every day of the week and never had a problem. I really don’t understand my new limitations, but I am learning.
I did, however, get to see my good friend, Dorothy, who just moved away recently. We had fun just lying around and watching The Help while my soup cooked. I am so thankful that I got to see her! It was a very welcome change to my usual sitting at home.
I am starting to feel overwhelmed by my own care. Just keeping up with my cooking wears me out and leaves me with nothing leftover. I can barely manage to cook and juice for myself every day, especially on days where I have to leave the house. But I really can’t eat many ready-made meals or snacks. It’s a dilemma. 😛
Today is going to be my rest day! All I have to do is go to physical therapy, so I plan to stay home and read and relax for the rest of the day.
For physical therapy, I just had a consultation. I sat and answered a whole bunch of questions, so next week we will start working! Part of my dysautonomia is malfunctioning pelvic muscles, which means that my muscles that hold my lower abdominal organs are overly tight. This causes a LOT of pain, tenderness, and other complications, so I’m excited at the thought of solving the problem! It is an embarrassing subject, but it is part of living with Ehlers Danlos Syndrome and Dysautonomia. If I can get these muscles to act normally, my nausea and abdominal pain will decrease! They most likely won’t go away, but they will get a lot better. I am hopeful!
I spent most of my day reading some books, and after dinner, I got to skype my boyfriend, Steven! It has been a while since we were able to talk, so I was pretty excited to see him! He will be coming down to visit soon, and I can’t wait. I miss him so much.
Today I had things I wanted to get done, but my body had other plans. I woke up groggy, which is usual, but this morning I almost lost my vision getting out of bed. It is a bad POTS day, so I need to take it easy. I will still be going on my daily walk and doing other things to take care of myself, but I won’t be doing anything too exciting. Part of my problem with my digestive system is that if I drink the amount of water I need for my POTS, I don’t have any room in my belly for food. I’m hoping to get some help from my cardiologist or the new specialist that I will be seeing soon. On days like today, I wish I could just go to the hospital and get some fluids! That’s really all I need, but it is so hard to accomplish with a sluggish stomach!
Also, I am really not excited for the time change. I finally got on a schedule! Hopefully I can go to bed early tonight and wake up at a normal time tomorrow. Then I don’t have to worry about adjusting! Ha. 😛
I did some handlettering today, and I read Beowulf, which was good! I really enjoyed it, and I liked the way it was written. I washed my sheets and spent a good portion of the day relaxing, which was exactly what I needed! I did get out to go to the grocery store, though, so that was good too.
Sundays are my new break from illness days. Obviously I can’t shut off my symptoms or anything awesome like that, but I will not be looking at any websites or facebook pages about any of my illnesses all day. I will still take care of myself and try to minimize symptoms, but I am not going to dwell on them! I hope to rest, go to church, and get my laundry done. I will also read some books I’m sure. But no EDS or Dysautonomia research for me. It is a much needed break.
I did not make it to church because getting dressed took all my energy away, but I stayed home and read my bible on my own. It was relaxing and a nice end to the week. For the rest of the day, I am going to do my laundry, read and relax!
And there you have it! A pretty typical week in my life at the moment. I hope it was entertaining or interesting or something for you! I am hoping to get in to see my cardiologist soon and my new neurologist next week. If I do get in, I will share some updates. Thanks for reading! 🙂