#myositislife

[myositisandme]

About me...

[myositisandme]

I think this is incredibly important for those to understand how Myositis can impact people's mobility so much. Even though now I can clumsily and slowly get up off the floor thanks to my meds, the thought of dropping on the ground still scares me and I'm sure other Myositis warriors feel the same too. Help when you can! <3

[myositisandme]

Sun Dec 18th 2022

Today should have been an uneventful restful day, but.... nope!

My husband came back from San Fran for a work trip, and he was determined to do some chores and jobs for the apartment. He did the laundry, cleaned our cat's litter box, and turned on the dishwasher ^^

I also wrote some Christmas cards! I noticed my writing is a bit off but I managed. After writing 3 cards, I got tired.

Then... my husband encouraged me to walk to a store with him. It went well. It was a bit snowy, but he let me hold his arm the whole time we were walking. My speed was slow of course but I kept walking. After finding the stuff we needed at the store, we took a coffee break at Starbucks before we walked back to our apartment.

I guess my victory of the day is walking.... for over an hour!

[myositisandme]

All the Vitamin C I can get ✌️

[myositisandme]

Fri Dec 16th 2022

OMG what a day! Woke up randomly at 7.30. Luther (the cat) likes to walk on my chest when he sees that I'm remotely awake so that kept me up. After an hour, I got out of bed to get ready for my somewhat busy day. I took my breakfast and meds as usual, and then... more appointment booking! My rheumatologist wanted me to book my pulmonary breathing test and MRI scans ASAP so I got on it. The pulmonologists downtown are soooo busy, so I managed to get an appointment at another location. I also managed to book my MRI scans at the same location but on a different date. So yeah... busy! It's supposed to be my winter break the next 2 weeks but clearly, I won't get that much rest. I also need to give more blood samples next week... UGH!! After all the bookings, I put on the film Tokyo Story on TV and had an hour-long nap. I think it helped me.

My husband should be home from his work trip tomorrow. I miss him but I kind of liked having the place to myself?

I knew I was going to have a friend over later so I made sure to shower. As you may know by now, showering is like a big chore for me to do. I didn't have to wash my hair so I knew it'd be shorter than most showers. This time though... I managed to cut my nails AND moisturize my arms and legs! It's a big deal. Sure I spent nearly an hour in the bathroom, but it's a victory for me. I also managed to vacuum the apartment. I couldn't empty the bin though so I'll let my husband do that when he comes back...

My friend and I had such a great time catching up! We didn't see each other for over a month because of my condition so we had loads to talk about. She's also immunocompromised and going through neurology treatments so she has an idea of how I'm feeling. I think the biggest thing I learned from our chat is that Myositis is now part of my life and I have to live with it. I believe that I will get better but it will take time, patience, and acceptance.

[myositisandme]

Thu Dec 15th 2022

Got woken up early by the cat again. I lay there for an hour and a half catching up with my doctor's messages and thinking about how I got here again. After I got up, I took my meds and breakfast. Almost forgot to take the 3rd med! I really need a pill box. The whole day, I felt tired and weak. My back and the right side of my jaw started to hurt. My big victory of the day was that I walked out of my apartment to pick up mail. It's a big deal! I had to walk multiple flights of stairs and pick up heavy packages. Although I got out of breath pretty quickly, I really enjoyed being outside. I miss the fresh air. For the rest of the evening, I just blogged and made a sandwich for dinner. I was still hungry but I didn't want to eat anything too sweet. So... I made myself a little bowl of greek yogurt with honey and a spoonful of peanut butter. It was yummy! Gotta watch that appetite of mine. I got really tired so I went to bed around midnight (that's an early night for me!).

[myositisandme]

Mon Dec 12th 2022

Third day on the meds. Not much going on throughout the day. My husband made chili for my friends and me. It was yummy. Been thinking about the Prednisone today. My doctor warned me I would get antsy and too excited. I haven't felt that at all yet but I'd say I def have an increased appetite. I haven't binged eat at all so I think I'm doing ok?

[myositisandme]

Sun Dec 11th 2022

Second day of meds. Had to leave one out because I can only take it 3 times a week (must keep track!). I was pretty tired in the morning so I slept in, BUT... I noticed that getting out of bed and getting off the toilet seat is getting a little easier! YAYYYYY!! The little differences make such a huge change! I'm so happy. I didn't really do much for the rest of the day. I briefly walked out of my apartment to check for mail but that was it. My walking has definitely improved a little bit (still have shortness of breath). Later in the evening, I went out to diner with my husband and friends. They were nice enough to make sure I can keep up with them. The dinner was lovely! I'm getting hungry again now....

[myositisandme]

Things you can't do when you have Myositis!

Pull yourself up from the ground/bed/chair

Wash/brush/tie your hair

Touch your back

Change your clothes

Do the laundry

Pick up anything off the floor

Lift your arms up in the air

Walk for more than 20 seconds

Sit down on the floor

Take out the rubbish

Hold anything remotely heavy for more than 10 seconds

Do all the positions during sex

Cut your nails

Use a spraycan

Walk up the stairs/uphill (you can, but you'll be out of breath)

Hike (ohh hells nah!)

Go to concerts

Chop anything

Load the dishwasher

Dance?

Do you have anything to add? Let me know! :)

[myositisandme]

Meds. You'll need them while doctors are hard at work learning more about your condition. #myositis #myositisandme #myositisawareness #myositislife #autoimmunedisease #autoimmune #livinglife #meds #prednisone #onethepred https://www.instagram.com/p/CmM3M84yLEr/?igshid=NGJjMDIxMWI=

[myositisandme]

Hi! Person with Myositis here ✌️ #myositis #myositisawareness #myositislife #autoimmune #autoimmunedisease #livinglife https://www.instagram.com/p/CmLpTTWOK7L/?igshid=NGJjMDIxMWI=

[myositis]

(via Myositis Awareness Month 2016: A success story)

Look at what YOU did to help make 2016 a very successful Myositis Awareness Month! 

[myositis]

Stan Armour shares the life of being married to his wife, a patient with #polymyositis, for Myositis Awareness Month, and MSU’s #MyositisLIFE project 

[myositis]

(via Heather's MyositisLIFE and Friendship)

Heather Spadaccini shares how her life is affected having a friend with Myositis for Myositis Awareness Month and MSU’s #MyositisLIFE project. 

[myositis]

(via Charlie Jester shares his #MyositisLIFE as a spouse and caregiver)

Charlie Jester shares his #MyositisLIFE as a spouse and caregiver for his spouse living with #Polymyositis, for Myositis Awareness Month and MSU’s #MyositisLIFE project.