Being chronically ill certainly is fun. It’s not something that I would ever wish upon anyone, and certainly isn’t something I’d want to keep if I had the choice. But over the years, I’ve begun to see the world in a slightly different way, through all the pain and difficulty my illness have caused me. It’s so easy to be negative when it feels like your body has given up all hope, but I am so glad to have learned that there is more to life than the struggles I am facing, as awful as they may be. So, over time I’ve learned to see the good in the little things, and be thankful for the blessings that life does hand me.
Ahh, music. Well-known by all as a beautiful part of life, love, healing and escape. Many people find solace in music, in many forms, and many will share stories of how it’s even saved their lives, but for me, the beauty of music is much simpler than that.
Music is pure joy and simplicity. I don’t need to move, don’t need to think, don’t need to focus, but can just enjoy. I may be isolated and alone because of my illness, but that time alone means I can sing at the top of my lungs to my favorite song with not a care in the world. I can retell stories of movies or musicals without having to even open my eyes. I can find things to match my mood, empathize, encourage me and so much more. Not only that, but it’s physically a great way of overriding my pain – highjacking the neurons in my brain to focus on something other than my pain. It is beautiful.
A great thing that happens when you can’t go for runs or travel fast or drive for long journeys – you get to sit and wait and watch the beautiful world that we live in. See the beautiful flowers, watch how the wind moves the leaves of the trees, follow the train of ants that scurry on the ground around me. With the busyness of life, it’s easy to be distracted, rushing past the world and ignoring how intricate and beautiful it all is, but when your body physically makes you stop, you can really appreciate how incredible it all really is.
3. Social Media
Nowadays, everyone loves to hate social media. People see it as some sort of plague that is infecting our society, the root of all evil of our generation, turning us all into mindless drones. But for me, and I’m sure for many other spoonies, the “mindlessness” of social media is a blessing, For those times when I’m swamped with brain fog and can’t seem to even think a single coherent thought, I have an endless stream of mindless amusement at my fingertips. On nights when I’m in too much pain to sleep, but don’t have the energy to entertain myself with anything, I can let the hours tick by with the constant distraction of comedy, memes, helpful little videos, information, inspiration, support and silliness that comes from just scrolling down my phone. I have a space to vent my thoughts and frustrations into the “void” of my anonymous profiles and find encouragement from others doing the same. I can find advice from those on the other side of the world who know exactly what I’m going through, just by adding the right #hashtag. I can see what is going on in the lives of friends I haven’t had the energy to meet up with in a while. You see, when my pain and fatigue turns me into a mindless zombie anyway, social media can be the best source of entertainment around.
4. True Friendship
It’s a sad truth that when you’re ill, friendships can fade fast. Many people are living busy, fast-paced lives that we can’t keep up with, or they don’t know how to relate to someone who is constantly unwell or sadly, they can even see having to take care of someone as a burden they don’t want to bear. With limited energy to socialize or maintain constant contact with people, it’s hard to keep up friendships when you’re ill, but what this has taught me is how truly beautiful it is to find a friend that genuinely does want to make the effort. Someone who is willing to put in the energy that I don’t have, who is understanding, who does their best to learn what I’m going through, someone who sticks out all the hardships that come with spoonie life. Over recent months, I have begun to truly appreciate the love, care and support I receive from my friends. I know that it’s not easy to maintain close connections with someone who has additional needs, and I value so much every bit of care and thought they put into our friendship. Even the small things like stopping by when they haven’t seen me for a while, or doing research on my behalf before planning days out so that it’s manageable for me and things can be planned around my illness, or noticing my tells when I’m starting to feel bad when we’re doing something and allowing me to go at my own pace. Or even them feeling comfortable enough to come to me when they have struggles, instead of being too scared or worried about burdening me – friendships are meant to be mutual! It’s easy to take friendships for granted, but through losing so many, it becomes so clear to see how wonderful it is when people do genuinely care.
I could go on and on (and maybe one day I’ll write a part two, comment any suggestions below!) but I guess my message is simply this – the world is a better place than we often give it credit for. Take time to stop – or make the most of when your body forces you to stop – and appreciate all its seemingly insignificant wonders.