Warning: contains GIFs
Three years ago, I was at the peak of my health with ME/CFS. I was able to drive myself out every day, go for walks, go out for dinner with my friends and even be taken on short trips out of town. I handed out how-to-vote cards at the state election, was volunteering one day a week at my local Lifeline op shop, and was doing so well I was looking at paid work for another day a week.
Until one morning, when I woke up feeling like I’d been struck by a bomb. All my strength had gone, as if dissipated by the feverish sweats, the vertigo and nausea I experienced overnight. I had no idea what was happening to me. Somehow, I dragged myself through the activities of the day, coming home to collapse on the couch in between each task.
Within a few days, I was unable to drive or walk even moderately short distances. I relied on a wheelchair to get out of the house. Within a week, I was completely housebound.
I didn’t realise at the time, but I was experiencing one of the worst nightmares of the chronically ill: a relapse. Relapses are feared and loathed in the chronic illness community. They lurk in the background of your life, reminding you of the unstable nature of your condition. What you have now, they threaten, isn’t forever – they can take it away any time they please. Relapses have struck me again and again, traumatising me and taking me back to places I wish I could forget.
My condition has always been an unstable one. I look with envy upon those with chronic illnesses who can push themselves to attend a Big Event, then deal with the payback later. My health is always so fragile, so precariously perched on a balance, that if I were to perform something out of my current reach of ability, I would dive into a deep relapse which may take months or years to recover from – if I did recover at all.
Take, for instance, trips out of town. Leaving Warrnambool is something that has, for the most part of my illness, been a pipedream. It is hard enough to live in a rural area without being trapped in a town that does not have the sufficient resources to minister to the chronically ill.
Yet I know that as soon as I venture out onto the highway, I would be paralysed from the intense pressure of the car movement. In 5 minutes, I would be groaning, drooling, and practically comatose. If I somehow made it the 8 hour round trip to our closest capital city, I would be knocked back to being entirely bedbound, a vegetable, perhaps forever.
This means most of my energy is absorbed by the exhausting task of managing my activity, carefully, so carefully, that I do not have a setback. Every day is meticulously planned. My activity is spaced out between rest and exertion, and I must ensure to not have two “events” (like seeing a friend) on consecutive days, so I can recover in between. I closely monitor my body for signs of relapse – not that there is any real distinction between everyday sickness and what precedes a setback. Combined with post traumatic stress disorder, anxiety and hypersensitivity of the senses, this makes for an anxious existence.
After the event, every setback is closely analysed to determine its cause. Was it speaking to the psychologist? Physical stress? Too much driving? Living in a noisy environment, over which I have no control? But over these past 6 years, I have come to the unfortunate conclusion that no matter what I do, no matter how carefully I plan my activities, and how well I manage my condition, nothing I do can prevent a relapse. Nothing.
The idea that chronically ill people such as myself cannot control their bodies is an incredibly difficult thing for an able-bodied person to understand. When you are fit and healthy, you just do things. You get up. You have a shower, without thinking. You go to work, or study, or exercise or take care of your children. You don’t have to carefully allocate energy to each activity of the day. And when you feel run down, you take a bit of rest then carry on. There is certainly no fear that if you go out to dinner on Friday night, you might not be able to get out of bed for the next two weeks.
The lack of control I have over my body is terrifying. I know that relapses will come again, and again, and again, and I may never regain enough functionality from the last relapse to survive the next. Yet this knowledge can never fully prepare me for the sheer horror each relapse brings. It is as if it happens for the first time, every time: the agony never loses its freshness, the fear never diminishes.
It seems like every relapse happens at a time when finally, something was going right for me. You can finally walk around large shops? Back to the wheelchair. Looking forward to visitors from Melbourne? Sorry, now you’re too sick to see anyone. Started a blog, after 6 long years of being unable to put pen to paper? Let’s see how well you can write when your mental capacity is so impaired that your tongue cannot form words, when speech comes out in stutters and slurs, and your mind becomes encased in fairy floss that makes a mockery of any cohesive argument you may have been able to form in the past. It’s as if I’m not allowed to love anything, or take pleasure in life, as that will be taken away too.
I know this is flawed thinking, and that nothing can stave off the course of this terrible illness. But this knowledge does not stop the retraumatisation which occurs every setback, when trauma upon trauma builds up and floods my brain and body with poisonous, crippling memories. There is only so much pain one person can take, only so many setbacks before you lose the will to carry on. It seems illogical to me to fight for my life for gains which can be wiped out in the blink of an eye.
Where this latest relapse will leave me, no one knows. Every sign is deceptive, and its progress unpredictable. I could plateau and start regaining some strength, only to be hit further in a few weeks time. I could slide, and slide, and slide down the slippery slope of relapse, all the way back to paralysis. No one else can predict its passage, or offer useful advice. Every healthcare professional I see expresses surprise at each relapse, and offers not much more than a shrugging of shoulders. Sympathy is certainly not on the cards.
All I can do is ride it out, and let go of any illusion of control. I learn not to place my happiness or self-worth on any one thing – relationships, sewing, walking, talking – as they will all be stripped away by this illness at one point or another. Like Laura Hillenbrand, “I have to detach myself completely from aspirations. I hardly ever listen to music anymore because it arouses all of this yearning in me.” This is less a Zen Buddhist mindset than a numbing of self to anything that I cannot have, or may be taken away from me. It is a type of death.
I have just experienced two years of hard work wiped out in the space of a few days. I do not know if I will ever regain that functionality again. But there is nothing more I can do than put one foot in front of the other, or sit upright if I cannot walk, or breathe if I cannot sit. I carry on, even if it just means mustering up all my strength to just exist. I am bolstered by the support of the online spoonie community. I remain, and hope beyond hope that one day, this disease will have a treatment.