What is Myositis?

For Autoimmune Disease Awareness month, I compiled some information about Myositis - one of the diseases I currently have. Enjoy! x

RAIN: A Mindfulness Exercise.

My therapist gave me this handy guide. It's all about being in the present moment and taking in your surroundings. I needed this because I tend to worry too much about the future. It's good to try to focus on the present. Hope this will help you too!

Come take my meds with me!

Just a little glimpse of life with a chronic illness. Fill a pillbox with me!

CAPTIONS:

Fill a pillbox with me

Mycophenolate Mofetil (Cellcept)

Prednisone

Sulfamethoxazole Trimethoprim (Bactrim)

Pantoprazole

Calcium D3

Thank you for watching!

About me...

A little video I made about Antisynthetase Syndrome for Rare Disease Day. Enjoy! ❤️

BBC News: World Sickle Cell Day: What not to say to people with invisible conditions

OMG this is just so cute! If anybody still doesn't get it, just show them this 🥰

Tues Dec 20th 2022

So... I think starting today, I need to accept that plans won't always go to plan and that is totally ok.

My original plan for the day was to complete a school assignment and hand it in, but NOPE! Here's how my day actually went...

Woke up at 11.30am. Caught up on messages and test results. Finally got out of bed close to 1pm. Ate my overnight oats for breakfast and took my meds. At 2pm, I FINALLY decided to take a shower and made sure to do everything I was supposed to do (get changed, moisturize, etc) and to my surprise, I was done by 2.30! I then decided to sit at my desk and check my emails and look at my school assignment. By around 3pm, I got hungry and decided to eat my lunch. I saw online that there was an online Myositis support chat group, so I joined it at 4pm. This was my first chat group and I was a bit nervous introducing myself (the tech issues did not help boo), but just hearing everyone's stories was absolutely emotional and heartwarming. A fellow new member just got diagnosed with IBM and hearing how his life suddenly changed made me almost in tears. Another member opened up about how somebody on FB didn't like that she opened up about her Myositis which I find heartbreaking. Despite the technical issues, I managed to open up more about my current journey with my condition and everybody in the group was so supportive. I'm just so glad I am not alone in this journey and I look forward to participating in more support groups.

After the chat, it was around 6pm and my husband wanted me to check out some hotels he found we could stay at for our trip to Oregon next week. We're taking our cat so we had to make sure it was pet friendly AND central to the city center. With my condition, I feel like I need to make sure I'd be comfortable and places are within easy reach. I'm pretty excited! Even with non-alcoholic drinks at breweries.

At around 7pm, my husband had to pop out to buy a salad for our dinner tonight. I felt really inspired by the support group to open up more about my condition, so I decided to give my mother-in-law a call. The call went very well! She's normally a worrier and I didn't want her to be concerned with me but I just loved how she listened and actually opened up about her own autoimmune conditions that we had even more to talk about! She was very supportive and I am so glad I got to tell her. I haven't told everyone else yet but I'm hoping to get there at some point.

I feel incredibly lucky with how everyone I've told about my condition has been supportive. Nobody questioned me or said that I'm just tired/stressed etc. They actually listened to me and took what I told them. I think this also goes to show how I've accepted that Myositis is part of me now and I'm going to learn how to live with it. *punches fist in the air half-assedly cos you know*

Victory of the day: unloading the dishwasher and tried to put all of the dishes away *thumbs up*

Mon Dec 19th 2022

Well well well. Today was a big one.

In the morning, I had my Pulmonary Function Test (the one where they put you in a booth and you breathe into a device to test your breath strength). To get to the hospital, I... walked 5-10mins to my nearest bus stop to catch a bus that takes me to the nearest bus station AND THEN... I had to catch a different bus that took me all the way to the hospital. It was a long journey but music and warm seating made it all lovely. When I got there, I had trouble finding the right office and I think I experienced a bit of anxiety. It was a bit scary, but I was fine as soon as I found the office. Once I got in, I had to take a quick Covid rapid test before I did the PFT. The test went well! The technician was absolutely lovely and walked me through everything. The breathing was hard as you had to take a deep breath and then keep breathing for at least 10 seconds. It was tough but the technician said I did very well. After the test, I even took my 2 buses home! As soon as I got home, I had breakfast, took my meds, and then took a nap.

After my nap, I had soup for lunch and then I was off to my next appointment... a CT scan. This was at a different hospital so I had my husband take me there. They must have been busy, I had to wait almost an hour for my scan. When my time came, the technician took me to the room and explained the whole process to me. I had to lie on my back (with my arms up eek) and as I went through the scanner, I had to take deep breaths and hold them. The last part was the hardest... I had to lie on my front and I realized I haven't done that in a very long time. The technician had to physically turn me to help me get into my position. It was so weird. The whole process was hard. The position of my body and having to hold deep breaths. I think my condition is that bad. After the scan, the technician helped me up and led me out to the lobby. My husband and I went home right away and I rested. WHAT. A. DAY.

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!

Sat Dec 17th 2022

Today marks one week of being on the meds! To be honest, it's been an emotionally shit day. I woke up feeling very sore. I got up later than usual because I stayed up late last night worrying about my husband. As usual, it took me an hour until I finally was able to get myself off my bed to have breakfast and take my meds. I just started crying and felt shit because I didn't feel physically well.

After an hour or so, my depressive episode was over. I feel fine now but I still feel physically tired. I popped outside to pick up a package (oh it was a box. big deal!). Even though I had to take a lot of breaks on the way back to my apartment, I noticed I've been getting more energy in my walking. I will def take that as a victory of the day!

I don't normally do this but I feel it is important to spread awareness about people with chronic illnesses. Today, I just feel shit. Like pretty depressive. As soon as I got up, I just wanted to cry. Right now, my cat is trying to get love from me but really, I need the love from him. This pic encapsulates just that. If you feel down, def reach out to somebody. Anybody! For those looking after loved ones with a similar illness, please just check in! A text, phone call... anything. It truly makes a difference. #depression #awareness #myositisawareness #autoimmunedisease #chronicillness #depressiveepisode #myositis #myositisandme #cats #love #diary #meds #autoimmune https://www.instagram.com/p/CmSZgGAPSiw/?igshid=NGJjMDIxMWI=

All the Vitamin C I can get ✌️