When I am in a bad flare… I 100% relate to Frodo… Feeling ugly and deformed and just wanting to be a part of the world again. Feeling so alone. Watching others living life – longing to belong amongst them. Just a regular person, living life unaware of what it is like to live a life of pain. Wondering what it must be like to live life carefree, without pain, without fear. Just wanting to experience one day like that…
Being chronically ill gives you a new sense of gratitude for old things you used to take for granted. Being able to get up and go out with friends. Being able to work a regular job. Walking around the mall or the park. Making plans without the fear of having to cancel because of your illness decided to flare up. Having friends and a social life at all.
When you’re stuck in bed on a flare day, all you want to do is feel well again. All you want to do is go outside and participate in life. Be a part of the real world, and not an observer. We watch our friends and family going about their days, progressing in their lives, making goals and accomplishing them, having children, getting married, participating in marathons and going to big events or going on vacations… All things that we fear we may never be able to do. Things we want to do. Things we plan to do whenever our body decides to cooperate with us.
On flare days we just sit and observe the whole word going by, continuing on without us as we fight against our own bodies. We live vicariously through social media, books, movies, Netflix binging television shows. We imagine ourselves as these characters and fantasize how amazing it would be to live their lives. It is an escape. It is how we cope until we have our chance to be OUT THERE.