Saturday, 11 May 2019

GUEST POST by Cassandra for ME/CFS Awareness Week 2019

For me, living with chronic fatigue (CFS) is like living with a huge question mark over my head 24/7 and never knowing when it’s going to drop and everything will fall apart. Will the amount of sleep I got last night be enough? Will I be able to sleep? Will I wake up with enough energy for the day? Will I have enough energy to eat enough? Will I have enough energy to make it to my appointments? Will I have enough energy to leave the house? Will I have enough energy to do something fun? Will I have enough energy to study? Will I have enough energy to get dressed? Will doing that one extra thing outside of my routine put me in a flare? Will that different environment put me in a flare? Will that sound put me in a flare? Will that light put me in a flare? Will that vibration put me in a flare? Will that smell put me in a flare? SO MANY QUESTIONS. EVERY HOUR OF EVERY DAY. 

CFS is different for everyone. My CFS is comorbidity of a neurological disorder. I guess I’m fortunate in that my CFS is not severe as some people in the CFS community. I study full-time at university (online), I go to gym twice a week (most weeks), I go to hydrotherapy and physio once a week for rehab for my neurological disorder and sometimes I still manage to do things for fun. BUT it has taken me over a year of education, pacing and trial and error for my body to be able to even tolerate my daily life and not have constant flares. There is a list of things as long as my arm of things I can’t do that every other person my age likely does because I live with all the above questions every single day. I have to control and weigh-up every single action I do every single day to ensure that I don’t push myself and stop functioning. I have to wear sunglasses whenever I’m outside and ear plugs whenever I go to the movies or a concert. With CFS, you never know how much fuel you have left in your tank. You’re constantly running on empty but you never know when it will run out each day or if it will run out.

When my CFS flares, it might be debilitating and what little life I have goes out the window. You’ll find me lying on the lounge, too fatigued to keep my eyes open, just literally surviving minute by minute until it’s time to go to bed. Unable to do anything other than eat a few times a day (someone prepares my meals) and go to the bathroom a few times a day (I am already a full-time wheelchair user from my neurological disorder). That’s it and that might be my life for a day, for a week, for a month or maybe even for a year. The flare might not be as debilitating and I might just have to cancel an appointment and have a day on the lounge to recoup. I don’t know how bad my flare will be, how long my flare will last and sometimes I don’t even know what caused my flare. 

That uncertainty is devastating. That uncertainty is CFS. The constant planning, evaluating, accommodating and weighing-up is CFS. “If I go to gym today, that means I’ll need tomorrow to rest so I can’t schedule anything because I don’t want to go into a flare.” “If I go grocery shopping I won’t have enough energy to study later because I don’t want to go into a flare.” “I have that assignment due this week, I can’t schedule any appointments because I don’t want to go into a flare.” “I need to go to bed early because I watched that video that had funny lights which caused me to have a headache and I don’t want to go into a flare.” “I’m too brain-fogged today to study, I’ll have to defer that exam because I don’t want to go into a flare.” No one knows what I have to go through in my head each day because of my CFS. That in itself is draining and frustrating that you can’t just live your life how you did only two years ago. 

Friends leave you because they don’t understand or don’t care. Family that don’t live with you don’t understand INVISIBLE illnesses. CFS is such a lonely condition. You are isolated because you can’t interact with the outside world like an abled person and society is not disability inclusive as it needs to be. Luckily, I discovered the online community and I don’t know if I’d be where I am today without it. The comfort of knowing that there are people all around the world that have lived what I have lived and can understand is invaluable and I’ve been given opportunities to advocate for myself and others that I wouldn’t otherwise have. My hope is that this small insight into my life with CFS can help just one other person or change one other person’s perception of CFS.