Persisting Pain

Sometimes buying gifts for your chronically ill friend or family member can be difficult; and as a chronically ill person, I often receive a lot of gifts that I cannot use. Here are some ideas of what they might like, but keep in mind that every person and every illness is different and so not every gift will be suitable for everyone. 1. A blanket (fleecy/weighted/heated) Spending a lot of time in bed or on the couch, a blanket always helps you get comfortable and relax. A lot of us with chronic illnesses have issues with regulating our body temperature and so a blanket helps with this. Getting them a heated or weighted blanket could also help alleviate some of their symptoms, such as pain. 2. A hot water bottle  Most chronic illnesses cause pain in some form or another, and a hot water bottle is an easy and reusable way to reduce this pain, even slightly, and it is great to cuddle up with during the colder months. 3. An eye mask An eye mask is a great gift fo...

My entire life, my mum has always thrown a big Christmas dinner. My grandparents would come round and we would eat her delicious food that she had been preparing for days and watch Christmas TV in our pyjamas. However, both my mum and I have multiple chronic illnesses and so this got more difficult to manage every year. A few years ago we had to make some changes that we had never planned to do, but it has turned out so much easier. We decided to start going out for Christmas dinner, at first to a local restaurant and this year we are booked into a carvery. We had always thought of Christmas as a stay-at-home, family day and thought that going out for it would take away something that made Christmas day what it was. If anything, however, it has made our Christmas day so much better! Instead of spending all of our time and energy making a massive meal that involves days of prep, pulling out and setting a table big enough for everyone, and then clearing it all up afterwards, we can...

The festive season is a time that almost everyone looks forward to. However, when you have a chronic illness, the holidays can be a difficult time for many reasons. Everyone’s illnesses affect them differently, so here are a couple of the ways that my health can taint Christmas for me: As you may know from previous posts, I have a stomach condition called gastroparesis. This means that my stomach is partially paralysed and this can cause issues including sickness, fatigue, loss of appetite, and food intolerances. Almost every holiday is focused around food, and this can make it difficult for me. A lot of the time I cannot eat without throwing up everywhere and when I can eat I am limited to small amount of specific foods in the hopes that it doesn’t make me sick. I can also be sure that if I eat I will be plagued with abdominal pains for hours afterwards. As a big foodie, this causes me enough problems on a normal day; at the holidays, this is downright awful. All of my illne...

Although I have been following the Slimming World diet for 18 weeks now, I have unfortunately not managed to post an update since the first month due to a series of personal issues (and some holidays, of course – it is summer). During this time, I have stuck to the diet on and off, with some weeks going better than others. I have faced a number of issues during this time – some diet related, some not – which unfortunately means that I am currently slightly heavier than when I first started in May. When I first started the diet, it took my body time to adjust. As I mentioned in my previous blog post, Metamorphosis , I have always had weight issues due to a medical condition called gastroparesis. My gastroparesis also means that my body cannot handle certain foods, most of which are what is recommended for most diets. However, after a few weeks my body began to lose weight very gradually. This was interrupted by my multiple travels (check my travel blog, Alex Alfresco ) and so here...

So I’ve just completed my first month on the Slimming World diet, which has been great fun although difficult as I love desserts! I’ve found some amazing low syn or even syn free recipes though which I’m planning on posting in the coming weeks, but this post is more of an introduction. Between my fast metabolism and my stomach condition (gastroparesis), I spend the first 18 years of my life underweight and struggling to gain and body mass. Then my medication changed and I started gaining weight FAST. Currently I am three stone heavier than I’d like to be. Maybe that’s not as much as some other people would like to lose – I am a fairly average body size and don’t look very overweight – but to me that is a big change. I can’t stop the tablets that are making me put on weight so I am trying to lose it healthily, which is why I turned to the Slimming World diet. Slimming World is more of a lifestyle change than a diet. It’s all about managing food, having the right food most of th...

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 ...

It’s been three weeks now since I finally made the decision to hand in my notice of resignation to work. I loved my job, and loved the people I worked with; it was not an easy decision to leave. But the impact on my health was becoming too much and it wasn’t fair to my work to be constantly phoning in sick and leaving them without anyone to do the job. Making the decision to quit wasn’t as simple as it may be for others, because for me it wasn’t just “this job isn’t working for me, I will try something else”. For me, it meant “having a job isn’t working for me. I am not capable of juggling work and my health at the moment. I need to stop trying and making myself more ill”. For me, giving up my job was giving up my chance of success, my opportunity to socialise, my independence. It meant admitting that I had to rely on those around me to support me. And it meant admitting again that there was something – a basic life skill – that I couldn’t do because of my health. In my eyes, ...

Since everyone is doing the 10 year challenge, I thought that I would have a look at how I have changed over the last 10 years. In 2009, I was 9/10 years old. That year I moved house and school, away from all of my friends and everything that I knew. I made new friends and went from being an outgoing, never-in-the-house little girl to an introverted bibliophile who only really socialised at school. I excelled in my studies and learned my way about living in Scotland’s biggest city after spending my childhood in a suburban community. And I began making plans for my future: At 10 years old, I didn’t know exactly what I wanted to do with my life, although I did have ideas – a nurse, a wedding planner, a teacher, a mathematician (I know, I was a nerd). I did know my dream job – an author – but society didn’t encourage you to pursue unrealistic goals, so I quarantined books and writing to being a hobby and dedicated all of my free time to it. By then, I had started saving for g...

Something that I am sure almost everyone with chronic illnesses has experienced is being accused of using my illnesses as an excuse – an excuse to stay off of school; an excuse to get ‘special privileges’ such as extra time during exams; an excuse to stay off of work; an excuse to avoid going to parties or other events; an excuse to use a disability parking badge. The accusations are endless. Those of you making the accusations look at me and see a young girl who looks no less fit or capable than anyone else; maybe you look and think that I am just being lazy. I can’t say exactly what you think you are seeing, but let me tell you what you are not seeing. You are not seeing me arguing with myself as I leave the house because I should be using my crutches but I’m too embarrassed; you are not seeing me trying to hide the pain in my face with every step I take, with every word I write, with every second that passes; you are not seeing me in tears because I am missing yet another e...