Frustration Aplenty

When it comes to being sick, the pain is the most obvious cause of frustration. Not just the pain but what it does to your body - the dystonia, the muscle deterioration. Things you used to be able to do with ease and never gave a second thought to become much harder, or even impossible. Imagine it taking 40 minutes to walk up your path - some days, it can take me an hour. Imagine having to rely on other people to cut up your food because you're not able to use both a knife and a fork at the same time - my left hand can't grip at all, so I can only eat with a fork or a spoon. Imagine waking up in the morning, and not knowing whether you're going to be able to walk, whether your legs are going to give out underneath you, whether you're going to be able to weight bear at all. Welcome to a life with RSD/CRPS.


But one of the things I find most frustrating is watching my life go by me and not having the energy to keep up. When I first got CRPS I was 13, so I have lived my entire adolescent life in chronic pain. I have watched my friends grow up, move out of home, travel throughout the country and overseas and gain their independence, while I have sat on the sidelines, with no way to keep up. I try to make plans to go out and see friends, but when living with a chronic illness, it's impossible to predict how you're going to feel on a particular day, so you never know if you're going to be up to going out or not. As a teenager with chronic pain, I've gotten used to not seeing friends, or not being able to go to a certain event or party. But that's not to say that it doesn't hurt each time you see the photos of some outing or another that you couldn't attend, or that you stop having that pang of jealousy each time you hear about something you couldn't take part in. Tonight my best friend organised a group of us to go out and have drinks, and I've been looking forward to it all week. This morning, my pain was high but I thought I'd be fine to go out for a short period of time. Come 7:30pm, I'm curled up on the couch, trying not to cry and barely able to move around the house, let alone go down my path and into town. So here I am, lying in bed, alone, while my friends meet up in town.


Now, I don't want this post to sound resentful or angry. I'm not. I don't resent my friends going out and having fun. I don't expect people's lives to stop because I'm sick. But I can't help feeling like my life has stopped because I'm sick, and everyone else has continued moving onwards. My days are structured around physio exercises, appointments, and doing my best to hold it all together and not break down. I'm 19 - a 19 year old should be moving out of home, planning a life after University, enjoying life. That's the life I was expecting to live, not this. There's a line in the song "I Dreamed A Dream" that reads "I had a dream my life would be, so different from this hell I'm living". Well, ain't that the truth!


On a more positive note, I'm currently in the middle of creating another RSD/CRPS Awareness video. My idea for this one is to show the many different faces of this condition - in between slides with information on them will be pictures of many of the amazing people I have met who are living with RSD/CRPS. If you want to be a part of this video, email your photos to me at ailsa.lipscombe@gmail.com. I'm interested in getting photos of people looking "normal" (that's to say, looking "well"), as well as photos that show you and your CRPS. That could mean that you're photographed with your crutches, wheelchair, swelling, discoloration, etc. Maybe a photo of you and your daily meds. Anything, really! The purpose of this video is to get information out about RSD/CRPS, while at the same time putting a face to our condition, showing that anybody can get this disease and that we're all real people.


My hands are cramping up so I best get going. Will update again in the next few days when I've got the energy xox