Persisting Pain

There’s a few things that most people with chronic illness learn after some time being ill – you will lose friends, maybe all of them; you will spend a lot of time stuck in the house; and you will get extremely lonely there. Staring at the same four walls of your bedroom or living room, no matter how many TV shows you have to binge-watch, will quickly become incredibly boring. A lot of my old hobbies have become unmanageable due to my health, and so I have tried everything – painting, bead-art, movies, TV, books (when I have the energy), blogging, games, embroidery, crafts, and so many other things. But even an introvert like me needs human company. I don’t have much family that I see – my mum, cousin, and boyfriend that I live with and the my dad and sisters who I see as much as possible. And I’ve lost most of my friends as a lot of teenagers – and people in general – don’t understand and, therefore, don’t have the patience for chronic illness. They would invite me out an...

**MINOR SPOILERS AHEAD** As some of you might know, a big part of why I started a blog was because of how much Claire Wineland inspired me. Claire was a young woman who got dealt a rubbish hand in life but still won. She lived her life despite having cystic fibrosis and although she died last year aged 21, she achieved so much. She inspired thousands, reminding lots of us with chronic illness that we aren’t alone, and she even set up her own charity to help others living with chronic illness. When I found out that Claire was a consultant on a movie about chronic illness and long term hospital stays as a teen, I couldn’t wait to see it. I was so sure that she wouldn’t let the right messages be lost and, although she unfortunately died before the movie’s release, her influence is clear throughout the entire movie. The protagonist, Stella, was heavily influenced by Claire and everything from her appearance to her attitude towards her illness shows this. Watching the movie ...

Hi! My name is Alex and I am an up-and-coming UK travel and lifestyle blogger writing about my adventures and managing life with multiple chronic illnesses. I initially started my blog after watching videos of Claire Wineland’s speeches. She inspired me and reminded me that my life was more than my disabilities. I have been ill my entire life, and my health will continue to decline. Among other things, I have fibromyalgia, gastroparesis, myalgic encephalomyelitis, depression, and anxiety. These limit my everyday life and I am still learning how to cope with them and still achieve my goals. My first blog at https://persistingpain.blogspot.com is where I write about learning to manage my illnesses and about how I try and live as normal a life as possible despite my disabilities. I also started a blog at https://alexalfresco.blogspot.com where I document my travel experiences. I have always loved travel and would like to share my passion with others. I have one f...

Having a chronic illness isn’t easy, but it helps to keep with you a few things that can make it at least a little more manageable. Below are 8 things that I take out with me wherever I go that can make things a little easier: 1. Instant Hand Warmers My pain can flare up at any moment, and so it is good to have small, simple ways to ease it a little. Heat helps, but I cannot take a hot water bottle everywhere with me. Instead, I carry about some of the clickable instant hand warmers that people normally use during the winter. These are easy to carry around and activate when I need them. To reset them, I simply boil them when I get home. BONUS: use them just after you have boiled them and then activate them later on to get two uses out of them each time! Make sure not to burn yourself though. 2. Spare Tablets So often I forget to take my tablets, and so I have a little strip of each of my tablets kept in a purse when I can easily take around with me. This means that ...

Dear Jameela Jamil, I sit here in tears as I write this. I know you probably won’t answer, but you are one of my biggest inspirations and I thought that if anyone could offer words of advice it would be you. Every time I see one of your tweets advocating body positivity or feminism or disability rights I like it and retweet and I think “I wish I could inspire people like she does”. I love what you are doing with iweigh. I love your acting but, even more so, I love your outlook on the world and your ability to inspire others. I am 19 years old. All of my life I have struggled with illnesses and disabilities that have left my body in a not-so-perfect condition. Don’t get me wrong, I am still grateful for all that I have – all of my limbs, a healthy weight, etc. I have struggled with body image for a decade already, but I thought that I had come to terms with my body. I even wrote a blog post at https://persistingpain.blogspot.com/2019/01/metamorphosis.html about my body pos...

The dating world is one that is difficult to navigate for anyone, not even taking into account disabilities. It was also a world that scared me and, because of that, I had never ventured into it. As I mentioned in my first blog posts – Recrudescence  and New Year, Same Journey – I spent a lot of 2018 trying to improve my life. As part of that I felt that it was finally time, at 19 years old, to enter the dating word. It’s not that I have ever felt incomplete without a relationship before, or that I think you need one in order to live a full life. It’s just that I want to start a family some day and, I’m sure everyone would agree, it can take years to find the person that I would want to do that with. I didn’t want to wait until I was nearly 30 and realise that it was too late. I fantasised about all of the ways that I would meet my soulmate – locking eyes across a bar, bumping into each other at university, being paired up for a group project, blah, blah, blah. But, in ...