Relapses: Fear and Loathing in Chronic Illness

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.

An image of two women wearing Greens shirts, posing with a poster of former Victorian State Premier Dennis Napthine.
Chillin’ with Den.

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.

A teal wheelchair.
Betsy, my (then) newly acquired wheelchair.

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.

An image of a man from The Simpsons, with a tiny toy door filled with toys representing viruses.
“Here’s the door to your body, see? And these are oversized novelty germs. That’s influenza, that’s bronchitis, and this cute little cuddle-bug is pancreatic cancer. Here’s what happens when they all try to get through the door at once.”

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.

A still from the movie Oddball, set against a backdrop of Middle Island.
I know what you’re thinking. Who wouldn’t want to stay in Warrnambool, home of Oddball? Call me crazy.

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.

A GIF from Arrested Development. Man says, I don't know what I expected.
What’s that? You wanted to maintain your current level of health? HAHAHAHAHA

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.

An image of Professor Farnsworth from Futurama, holding a phone to his ear. Caption reads, to shreds you say
My sense of self-worth and enjoyment in life, post-relapse

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.

A GIF from 30 Rock. Dr Spaceman addresses Liz, caption reads, sounds like you could use a little R&R - rum and ritalin.

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.

Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all
Purchase at JustPeachyPrintables on Etsy.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

15 thoughts on “Relapses: Fear and Loathing in Chronic Illness”

  1. Siobhan, my heart is aching for you right now. Not sharing your experience I feel like anything I could say would be trite and glib. But I am holding you in my heart and I am hoping and wishing and praying for you. Much love.

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      1. Don’t be ridiculous. I’m actually doing really well right now so please don’t think that way. Relapses – whether big or small suck majorly. I’m just glad I can be sympathetic and actually understand – on some level anyway – what you are going through. Stay strong and keep your head up my dear. (As far as you can anyway.)

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  2. Dear Siobhan, I don’t know what to say except that I wish that your health would do a u-turn and take you back to days full of energy and zest for life. I can’t even imagine what you are going through now. Since loosing my husband to melanoma, I have not taken my good health for granted but I do when I know what you are going through. I can jump out of bed and go for a walk and not even think that it was anything special. Please know that I am always thinking of you and wishing for you, a return to good health.

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    1. Thank you Marjorie, I wish my health would get into line too! I’m so sorry you lost your husband to melanoma. That must have been an awful time for you, and I’m sure it still is in many ways.

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  3. Oh, crap. Relapses are totally, utter, complete shit. Pardon the language, but really. It is. And so unfair. What kind of treatment do you get, in which directions have you looked? I know that’s asking much and just thinking about it will probably steal spoons, but still. I just started with LDN, again. Tried it 6-7 years ago, and it was not a good experience. Since then some new research have shown that some people need extra low doses. 4.5 mg, which is considered optimal – IF THE PATIENT CAN HANDLE IT – is way too much for me. 1.5 mg otoh seems to be ok. Good even. I’ve got some getitdoneability that’s absolutely amazing. I managed to tidy a room in the basement which sorely needed it. And I think that maybe now I have the extra mind-space needed to do a diet overhaul. I need to feed my mitochondria. If I have no energy, then they have no food to produce energy for me, so feeding them seems like a good first step.
    I hope your relapse is short, that it is done here and now, and that you are improving faster than you thought possible. Possible not a realistic hope, but one can still hope, right? Wishing you a drawer FULL of spoons!
    Berte

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    1. Thank you, a drawer full of spoons would come in very handy right now! I’ve investigated pretty much every course of treatment over the years, and the only thing that really helps is self-management. I’m hypersensitive to medication so more often than not they will cause a relapse, which is frustrating and scary.

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      1. I don’t like medication either, and I think I am rather sensitive to them too – which is why 4.5 mg of LDN was such a bad thing. I’m constantly asked to consider all kinds of meds, but I don’t want them. LDN otoh is a totally different thing, because far from trying to subdue your immune system, it helps it to work better. It ups your body’s production of endorphins. Something that not only is a great self made painkiller, but it also helps regulate the immune system. You take it at night, and it works through blocking your opiate receptors, fooling your body into thinking it has none, and then producing more. This gives you a rush when the LDN is metabolised (the first night I woke up all woozy, I was seriously drugged, sailing on clouds of giddyness), but it seems I am getting accustomed to it now. I just surface slightly before falling back to sleep. It’s also very cheap. I paid NOK 400 (a bit less than £40) for a 200-day supply, and sometimes I think that’s why it’s not as heavily promoted ad those standard meds. It’s just too cheap.
        Even though it’s 22 years since I was diagnosed there’s still stuff to learn and try. I’m not sure I’ll ever be done with that…though there are times I feel like just crawling into a hole and disappear. Thankfully that feeling never lasts. 🙂

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  4. Hi Siobhan, I’m sorry to know that you, too, suffer with chronic illnesses. I belong to the same crappy club, with a very long list of diagnoses. I understand everything you just said here. Just to name a few…. I have Fibromyalgia ( A friend of mine in Scotland has ME and he said it’s the same thing as Fibromyalgia) and CFS. Those 2 chronic illness alone are horrific. Add any fuel to that fire and it’s pure hell. We never have any idea what each day will bring, but what we do know is that for every little thing we do, there is a price to be paid. Could be 2 days, 2 weeks, 2 months, a year, even longer………it’s a crap shoot every time. Just know you’re not alone. I’m here if you ever need to chat or vent. I hope you’re having a “good” day. Peace out. XX 🙂

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      1. You’re so right about that. I’m so glad I started blogging, even though I never liked writing, but that has changed and I’ve met so many wonderfully, amazing people right here. May our spoons be with us. lol 🙂

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