From Cape Town to Hanoi: Let it Go. Let it Flow.
The early morning squints at us through milky eyes, still only half awake. Our suitcases are stacked at the gate. Four cats lined up next to us like furry sentinels.
Against all odds, the day has arrived. We are going to Vietnam. And I feel surprisingly good. It is an enormous relief that I am actually upright and able to move. Only three days ago, I woke up with screaming muscles, not knowing how to make it out of bed.
From the kitchen comes a high-pitched “Ok, bye”. Our beady-eyed African Grey parrot, Toby, already twenty-one years old, but with the spirit of a mischievous toddler. He even has a little dance to accompany his chitter chats.
My animals hold me close through the worst of the pain and fatigue. All four cats often stretched out on my bed with me, even when the weather’s good, but I’m not. I will miss them. But at the same time, I am filled with anticipation. Soon, I will be reunited with my children. Woohoo!
Over twenty hours’ travel lies ahead of me, sudden curve balls not included. If only I could use one of Harry Potter’s portals, apply the right magic, and skip the journey altogether.
The holiday felt like too much from the word go. Three years ago, was the last time I tried to travel. I became so ill during the short inland trip, that I lost all confidence in my ability to do this. Easier to stay at home with what I know.
But here I am today, jumping in head first, deliberately dodging any thought about the consequences. My husband, Pierre, as always by my side to help me. What will happen will happen. I will simply have to roll with it.
TRIP WITH MUM
In 2010, I travelled with my mother from Cape Town to Johannesburg, a two-hour trip. It was the last time we travelled together before she passed away, and also the first time ever she let me take control.
At that point, I had already been diagnosed with mild Myalgic Encephalomyelitis (ME), a neuro-immune disease causing chronic debilitating pain and fatigue.
In the spring of 1999, I had contracted Brucellosis Melitensis, an opportunistic bacteria found in unpasteurised goat’s milk, and was never the same afterwards.
A while later, I was diagnosed with ME and Fibromyalgia, a widespread pain condition, by a top rheumatologist. For many years, I was fairly functional if I paced carefully.
Still, it was no walk in the park. There were many days, and sometimes weeks, when I struggled to get out of bed. But I could always recover to some extent, though I did have to give up on any full-time work.
Yet, in the past five years the ME part, the incapacitating, life-draining fatigue, has become far more pronounced. I am now mostly housebound and at least 80% bedbound.
But on that trip with Mum to Joburg, I was still well enough to help her. Mum has always been fiercely independent and adventurous. After my father died, she travelled in earnest through Europe, and especially Eastern Europe, for most of her sixties and seventies.
She was determined not to become a burden to anyone in her old age, and wasn’t one to reach out and ask for help. But on this short inland trip with me, she finally relaxed and let me assist her.
I noticed that she was struggling to carry her suitcase. It made me realise how frail she had become. She has always been so strong, mentally and physically, this invincible mother of mine.
Her first health setback came in her early 80’s from changing a light bulb, while standing on the dining room table. When the table wobbled, she slid off and broke her pelvis. That was Ma for you.
MUM AND MIGRAINE
Mum suffered from crippling migraines for most of her life. It only subsided in her last years. I remember coming home from school to a quiet house, while she was lying in a dark room waiting for the pain to subside. It would wipe her out for at least two days afterwards.
In those days, there was little support or understanding for migraine sufferers, if not still today. Her only defence was a cocktail of pills she would take daily to minimise an attack. I remember accompanying her as a child to many a specialist to find a solution, never suspecting that I would become that person too.
If you suffer from migraines, it is like any other invisible illness that goes mostly unnoticed and under-recognised. Like ME, it can severely impact one’s ability to function, causing visual disturbances, nausea, vomiting and uncomfortable tingling. Then there is the drill bit pain in the corner of a temple.
Some ME sufferers also get migraines or a form of a pounding headache, which manifest mostly as a throbbing on both sides of your head. This, on top of all the other debilitating symptoms.
Mum ended up as my greatest champion when I became ill, with an uncanny understanding of how ME affected me. When I asked her why, she simply answered that my situation was not unlike her struggle with migraines. What an eye-opener this was for me.
She told me of the many times she had to go to my dad’s work functions when a migraine would hit her out of the blue. How she would fight to stay upright, and keep a coherent conversation going. She found it deeply embarrassing when it got to the stage where she had to excuse herself to go home.
Like ME, there is no cure for migraines. Nothing can stop the onset. And like ME, it is unpredictable and relentless, killing one’s confidence in your ability to meet commitments. I know this, as both my daughter and husband suffer from it.
Still, most migraine sufferers are able to fully recover and function between attacks whereas with ME you are no longer able to function normally.
It was my rheumatologist who first mentioned the genetic correlation within families in which both migraine and ME patients are diagnosed. Both conditions are neurological by nature. Furthermore, if someone already suffers from ME, other family members also stand a chance of developing it.
Having a relative with ME means you are at greater risk for it, but not that you will definitely develop it. Genetics plus environmental triggers are believed to cause ME. Thus, it runs in families, but not in the predictable patterns of a truly inherited disease.
And now, thirteen years after the trip with Mum, my husband, Pierre, and I are off to Vietnam to visit our children, who are both living abroad now.
A year ago, we became empty-nesters, and it is not like our children are around the corner. Our son, Charles, now lives permanently in Vietnam, and our daughter, Keni, in the Netherlands. For this holiday, she decided to fly from the Netherlands to join us.
To make this trip happen for me, exceptional planning had to go into the preparation. The most important precaution was to organise a wheelchair in between flights to minimise Post-exertional Malaise (PEM), the worsening of symptoms following even minor physical or mental exertion.
A healthy person can jump on a plane without a second thought, and would only need a few days to acclimatise when jetlagged. For people with ME, travelling can be a smorgasbord of physical disasters.
If you pick up a bug, or deal with unexpected flight delays or any other x-factors, it can set you back, and even cause you to become completely bedridden.
At the heart of it all, skulks PEM, the eternal, clandestine, thieving elephant engulfing the room of all ME patients. Ruthless robber of our ability to function, our wits, resilience, and any future promise.
What makes it especially treacherous is its delayed effect, lulling one into a false sense of I’ve got this, just to be hit by a shovel twelve to forty-eight hours later.
This is why people with moderate to severe ME avoid travelling. The price we pay can be life-altering, rendering us even less functional with no end in sight. There is no cure. No magic wand.
A SET OF ‘DEM’ WHEELS
And here, for the first time on a trip, I am in a wheelchair. Something I could never have imagined in the past, and something that doesn’t come naturally to me.
My usual disposition is to help others. To anticipate others’ needs. To me, this has nothing to do with being a do-gooder. Those are the principles I grew up with, as natural as breathing.
But suddenly the shoe is on the other foot, and I am the one at the receiving end of such grace. And, at the beginning of the trip, it evokes considerable discomfort in me. I find myself apologising to the staff for the inconvenience of having to push me around.
But it also brings home the severity of my ME status. Am I really here now? And I question whether I even deserve this. Is there not someone else who needs this more? People who can’t walk at all.
But the answer is clear right from the beginning as I struggle to climb out of the car, and hobble to where the wheelchair is waiting for me. Having a wheelchair offers the relief that I do not have to struggle to stay on my feet. And thus, hopefully, pay a lesser price later for overdoing things.
It is not so much that our legs won’t work. It is the fact that after a few steps your body feels so tired you want to sag onto the nearest bench or even the floor. Add to that the pain and stiffness in my hips and ankles, and it is simply not worth it.
Later on, as we travel to Hoi An and back, the wheelchair is a godsend in the cloying heat that drenches you in seconds, amidst the thousands of bodies, overbearing noise, and penetrating bright lights.
I am very aware of how privileged I am to be able to travel. So many people with ME cannot function at all, and spend their lives in a dark room not being able to tolerate any stimulation.
No bright lights, loud sounds, strong smells or sudden movements around them. Even swallowing, talking or writing is too much for them. Many are fed via a feeding tube.
I hear of more and more young people living in this twilight zone with no way out. They miss out on all the milestones an able-bodied young person can strive for. Things other young people take for granted. Studying. Building a career. Exercising. Travelling. Socialising. Going out on dates. Falling in love. Building a life together.
They have no option but to live like Schrödinger’s cat in this in-between world, the years stretching ahead with no promise, no fulfilment, only the ravages that the illness brings. A surefire life-sentence. What young person would want to live like that?
But it is not only young people who land up like this. People of all ages are susceptible. In a post-Covid pandemic world, with the onset of Long Covid, also called Post-Covid syndrome, there is more awareness of people living in this state of non-functioning.
My greatest fear is to end up like them. And in my preparations to embark on this travel, there are moments when I wonder if this trip will do it to me.
Coming next: Landing in Hanoi, Vietnam: A Brand-new World
Thérèse is a poet, journalist and editor, as well as pro bono writer and advocate at the ME/CFS Foundation of SA. The Devil in Travel: Part 1 is her first blog post in a series of posts about her adventures travelling in Vietnam with ME.