Myositis and Me

Living with Antisynthetase Syndrome ♡ Polymyositis ♡ Interstitial Lung Disease ♡ Raynaud's Phenomenon ♡ Mechanic's Hands

[myositisandme]

About me...

[myositisandme]

What is Myositis?

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

[myositisandme]

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!

[myositisandme]

Come take my meds with me!

[myositisandme]

[myositisandme]

Happy Mother's Day in the U.K ❤️ I'll never forget the moment I talked to my mum about my condition. It was before my diagnosis so my symptoms were still a bit severe and I was already experiencing the side effects of Prednisone. I remember almost being in tears describing my symptoms because growing up, she has always seen me as a very active person and not having had any health issues. Like her, I've always been organised and goal-orientated, so to get hit with this illness has been life-changing. Since I told her, she has been nothing but understanding and supportive. She has been checking in on me from time to time, reminding me to take my meds, and sending me soup recipes. I love you, Mum 😭😭😭 https://www.instagram.com/p/CqBb9SuPjZJ/?igshid=NGJjMDIxMWI=

[myositisandme]

Happy Music Friday! Listening to music is one of my coping methods in this journey, and I figured I should share some of my favourite songs! When I first started having symptoms, I was in such a panic mode that I wasn't able to do anything but mostly watch TikTok. It was there that I came across this song and I couldn't stop listening to it. The style of it feels inspirational and pretty moving. Fujii Kaze is one of my favourite artists right now. Hope you like this song! #fujiikaze #shinunogaewa #jpop #tiktok #music #japanese #grief #pop #copingmechanism #illness #chronicillness #raredisease #autoimmunedisease #myositis #antisynthetasesyndrome #ild #interstitiallungdisease #polymyositis #spoonie #zebrastrong https://www.instagram.com/p/Cp6Go2uPLFD/?igshid=NGJjMDIxMWI=

[myositisandme]

This time 8 years ago, I was travelling around New Zealand with my husband and our friend. We had the best time! I remember it took my friend and me 10 jumps to get this pic. I'm not sure if I can ever jump that high again, but if I can - I would love to recreate this pic again ❤️ #grief #loss #friends #jump #newzealand #travel #flashback #chronicillness #raredisease #autoimmunedisease #myositis #antisynthetasesyndrome #polymyositis #ild #interstitiallungdisease #raynaudsphenomenon #mechanicshands #prednisone #moonface #spoonie #zebrastrong #myositiswarrior https://www.instagram.com/p/CpyBuWUvqrf/?igshid=NGJjMDIxMWI=

[myositisandme]

Huge shout out to @spooniesistershop !! I'd say the biggest concern with my condition is my lungs, and I knew that buying this t-shirt was a perfect way to dedicate my love for them ❤️ #spooniesistershop #business #tshirt #awareness #lungs #print #illness #health #love #design #store #chronicillness #invisibleillness #myositis #antisynthetasesyndrome #polymyositis #intersitiallungdisease #ild #raynaudsphenomenon #mechanicshands #raredisease #autoimmunedisease #spoonies #myositiswarrior #zebrastrong #moonface #prednisone #medication https://www.instagram.com/p/CpnyIt9vTuq/?igshid=NGJjMDIxMWI=

[myositisandme]

"A chronic illness is not a life sentence. One can learn to live well despite it. But first, one must learn to live with it." Paul J. Donaghue & Mary E. Siegel, Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. #quotes #bookstagram #motivation #chronicillness #sickandtired #selfhelp #mentalhealth #book #life #living #invisibleillness #truedat #motivationalquotes #livewell #learn #myositis #myositiswarrior #spoonie #zebra #antisynthetasesyndrome #autoimmunedisease #raredisease #interstitiallungdisease #raynaudsphenomenon #mechanicshands #health https://www.instagram.com/p/CpgKH00PYHp/?igshid=NGJjMDIxMWI=

[myositisandme]

HELPLESSNESS. I've been putting this off for a while but I know this feeling is something we probably have in common. This time two weeks ago, my mother-in-law sadly passed away. It just happened so quickly. My husband has been away this past month to take care of her and make sure her cancer treatment goes well. The last time I spoke to her, she was in pain but she was in better spirits after having the treatment. But then things just went downhill from there. Right before she was gone, my sister-in-law and I planned to go to her. I asked my pulmonologist about flying and he said I'll need to rent an oxygen concentrator and recommended a company. It turns out places don't rent them out if you're going somewhere that doesn't have their branch or if you're not a patient. Heartbroken, I told my sister-in-law to go without me. I know my family understands but I've just been feeling helpless. I HATE being stuck and not being able to help. Since I heard the news, I've been keeping myself busy with my studies but that feeling of helplessness never left. Tomorrow, my mother-in-law's funeral will take place. My husband and other family members have been doing a great job arranging everything. I'll be watching the service online. I just wish I could be there to hug my family in person. My mother-in-law got me these amazing socks for Christmas last year. I'd never guessed it would have been our last. #helplessness #grief #loss #family #mentalhealth #mourning #funeral #service #love #oxygenconcentrator #lungs #health #cancer #sadness #frustration #tears #death #socks #gift #antisynthetasesyndrome #interstitiallungdisease #myositis #chronicillness #autoimmunedisease #raredisease https://www.instagram.com/p/CpUYjM7uhPL/?igshid=NGJjMDIxMWI=

[myositisandme]

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!

[myositisandme]

BIRTHDAY. Thank you all for the birthday wishes! Who would have thought it would land on Rare Disease Day AND this would be the first one with my illness? I had a lovely day (despite the back pain). My family chatted with me online and we had a lot of fun. My friend came over later and brought me Din Tai Fung. We drank some wine and just ate! Yeah, it was great. Last year I had a massive house party. It's just nice not to make a huge effort for once and try to contact people you don't see often to try to celebrate you for one night. This year has given me a new perspective on friendship and made me appreciate those who truly love me ♥️ #rarediseaseday #birthday #celebration #friendship #friends #chums #mates #love #dintaifung #soupdumplings #xiaolongbao #food #dinner #games #chronicillness #autoimmunedisease #antisynthetasesyndrome #ild #invisibleillness #interstitiallungdisease #raynaudsphenomenon #mechanicshands #spoonie #zebrastrong #myositiswarrior https://www.instagram.com/p/CpRM45arp_-/?igshid=NGJjMDIxMWI=

[myositisandme]

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

[myositisandme]

BAKING... ... is one of the things I am so glad I can still do. My birthday is coming up so I decided to bake with a friend! We made Pavlova & Strawberries and Gluten-free Cupcakes w/ dairy-free chocolate frosting. It took hours but the catch-up and the result of our hard work were worth it 🥰 #baking #birthday #glutenfree #pavlova #strawberries #sugar #chocolate #cupcakes #meringue #frosting #bake #chronicillness #raredisease #antisynthetasesyndrome #invisibleillness #myositis #polymyositis #ild #interstitiallungdisease #mechanicshands #raynauds #spoonie #fridaynight https://www.instagram.com/p/CpFDd0EucDH/?igshid=NGJjMDIxMWI=

[myositisandme]

STUDYING AND REST. Thanks to no doctor's appointments, I've been able to stay home and give my body the rest it desperately needed. It truly has made a difference! No fatigue, backache has been minimal, and my sleep is getting a little better. AND I made amazing progress with my studies (4 courses in 1 week!). In the next week, I have my check-ups with my pulmonologist and rheumatologist. It's getting more likely that I'm going to have to make some very tough decisions, and frankly, I'm a little bit scared. Stay tuned! ❤️ #decisions #study #studentlife #autoimmune #autoimmunedisease #antisynthetasesyndrome #ild #raredisease #chronicillness #invisibleillness #zebrastrong #spoonie #myositiswarrior #myositis #polymyositis #catmum https://www.instagram.com/p/ContTutvPLK/?igshid=NGJjMDIxMWI=

[myositisandme]

Dear Scientist: I have a rare autoimmune disease. Do I need to accept this quality of life?

Patient Jerry Williams and Pfizer scientist Janet Buhlmann discuss the challenges of living with Dermatomyositis.