A year in review- 2021

I heard someone speaking of chapters in their lives and starting new ones. I feel today marks the day of a new chapter of my life. My “character” has grown and changed, there is new characters, some characters have gone. Heck, even the plot has changed a few times in just 12 months, not just for me but the world of cystic fibrosis.

So, to start with.

Trikafta has been approved in the UK for just over a year. It’s been such an amazing drug for me and has changed my life for the better. I no longer cough and I only reason I do my feed every night is, so I don’t have to eat an extra 1000kcal orally. So maybe next year ill be celebrating my thriving with its removal. I got a Facebook memory today and I noticed as of today my lung function has raised 7-9% The majority of my hospital appointments are now virtual so I can travel more once we get out of this pandemic. And in this last 2 years I’ve been admitted into hospital……. (*drum roll*) Just once. It wasn’t even for my chest.

On separate news, we’ve all lived just over a year in numerous lockdowns over Covid-19 (that I’m happy to say I’m now fully vaccinated against)

I no longer volunteer for Clarion. I have a new landlord now; however, they are actively waiting for a permanent Job position for me.

I have a job, a car and a couple grand saved for my van (at this point I’ve officially started my van project. I don’t have a full licence, yet, the van, the equipment, buuuttttt I have a couple of bumper stickers. So, in my eyes that still counts hahaha)

I have lost touch with Adam and don’t really talk to Alice as often as I used to.

I’m closer to Becca, a woman that saw me drinking a JUG of tequila alone in club smoking area (after her friend tried to chat me up because she saw me on naked attraction, I had no idea that’s what she was doing. As confident as I am on the outside, I’m still clueless when it comes to women and can still be really shy. Literally the case of fake it ‘til you make it. Hence going in the show in the first place).

I hang out with a guy I knew from school called Jamie. He’s a good man. God knows why we didn’t hang out more in school.

I finally met my dear dear friend Beth in person (after 4 years+ talking) as well as getting to know two amazing women Chloe and Jess. Two beautiful women (inside and out) both with cystic fibrosis. I joke that I have a Charlies angles set up now… or a team of powerpuff girls haha.

Still, I think there was someone that not only made me realise I was in a new chapter but also sparked the biggest changes in me, and today marks the day she first message she ever sent to me.

My life before this person was fine. I had a few issues with mortality, my health was only just starting to increase, and I though love just wasn’t meant for me. Then she came along.

Learned what love felt like for me, I learnt about the very real horror of T1 diabetes. Then after 4 months I lost the person I was convinced was my soulmate. It wrecked me. I had depression, started having panic attacks, I lost weight and didn’t sleep for months. She taught me that words are just that. Words. She wrote beautiful letters and made empty promises, but her actions were cruel and calculated.

I knew I didn’t have the opportunity to know every part of her, but I was so deeply inn love with the part I did know (faults and all). I felt stupid for still loving her months after she ended it, then I realised something. I don’t have to love her wholly. Part of me hates that woman but I still love, to this day, that part of her that lives in those letters. That wasn’t a fake version of her. It was just the side that had courage to tell me she loved me, it was the part of her that had every intention on fulfilling our promises and it was the side to her that was genuinely excited to spend her life with me.

I still fight to fund a potential cure for diabetes. I hate the fact that her, her dad, and millions of people around the world have to face it every single day. If I can change that for her it would make me really happy (so maybe now would be a good time to sneakily mention Heading to 22. A team getting funding for the first cure for T1 diabetes and not just maintain it. I personally have raised and donated just over £300 so far and I’m still going)

Still heartbreak came with a lot of positive changes. In my time with her I really wanted to comprehend the existence of God. She was heavily religious, and I was studying the existence of God in my philosophy work at university. I thought I had a religious experience years ago but during the darkest part of it all I prayed and felt the most amazing thing I had ever felt. I pray everyday out of gratitude for that night. I genuinely saved me. I started attending church. I still help out there but unfortunately, I work Sundays so now I go to service virtually. Strangely enough via tiktok.

Tiktok has been mental too. I got it because Alice wanted to try the dance things. At the time it was just bad lip syncing and dancing for the NHS. Now I have my own little CF family on there. We do videos together, keep in touch and just enjoy life. I love seeing all the new CF babies doing their treatments and loving life. It makes my so happy that now due to Trikafta their CF lives are going to be so different to mine and people like me. A youtuber named Kate Eveling fund me on there and I love watching her channel. You’ll see my friend jess on there too.

It really helped me get back on track with my mental health. One person in particular has helped me a lot. Her name is Kiya Aka Luna. She messaged me back I February and now I’m doing too much better. We even got to meet in person on the first of last month. It was the first time in a long time I felt truly happy. So, if she ever reads this. Thank you. A lot of people tell me I have this “brightness” about me. Thank you for bringing that back.

So, I guess that’s it for this mental rollercoaster of a year. Thank you all for reading this. I really hope your next 12 months changes you for the better.

All my love,

Ryan x