Some friends and family have been wondering where I’m at, so here’s an update. 2022 hasn’t panned out at all as expected but, considering everything, I’m in a good place, mentally, as well as being sheltered in the peaceful and leafy surrounds of the Imhoff Caravan Park in Kommetjie.
As winter encroaches, I am waking sometime between 8.30 and 9.30am depending on how capable my body was combatting adrenaline spikes in the small hours. It takes one hour for the sensory overwhelm to subside enough for me to get out of bed (noise and light are debilitating at this stage, I often wear ear defenders), and another hour to wash, dress and make my bed. My husband makes me a fruit smoothie for breakfast; I consider myself very fortunate that I am not at present suffering the difficulty swallowing I had in winter 2020. Half an hour’s T’ai Chi eases pain in my muscles and joints, restores my balance to some degree and stokes my organs.
So it’s taking the whole morning to get up and get ready. Lunch is also usually prepared by my husband because I’ve used up my standing time on T’ai Chi. I have to lie down and rest to bring my heart rate back down while he’s making food, then rest again after eating in order to digest it. I only shower once every three days, because that takes my energy reserves for the entire day.
If I’m lucky I may get one hour after lunch when I’m capable of working while lying on my bed. Writing has unfortunately taken a back seat to a host of other things: an admin email or a phone conversation with a family member might use up all my spoons for that day, and both have been very necessary recently.
In the late afternoon, whenever I can, I have been taking a gentle walk around the campsite. This 10 minute circuit brings the day’s total steps to around 4000, a huge improvement on May 2020 when (unable to fly to Spain as planned due to the onset of the pandemic) my upper limit was 1500 steps. Even last year, I had to stop and lie down every 100m to put my legs above my head so I could breathe. Now I can go 1km! It’s a significant increase in strength and resilience.
I am so eager to do more but am constrained by getting klapped by PEM if I go above my limit. A week last Saturday, Zola came to visit, and I lay on a campbed outside the truck chatting for 90 mins. Exactly 24 hours later, on my usual sedate circle of the park, I suddenly felt very unwell. My Fitbit showed my heart rate spiking to 162 (from resting 68) when it usually only reaches 100-120 if I’m pacing carefully. When exercise is poison to your body, how do you keep fit?
Postscript: The day after pushing myself a bit too hard to publish this blog before month end, my heart rate went up to 177 on my afternoon walk.
Maybe once a week, on a day when I don’t shower, I cook the evening meal in the early afternoon, just to give Sampson a break. But it’s mostly a token gesture: he’s doing all the shopping, all the washing up, all the hand-washing. Plus chopping a butternut left my right arm completely useless for 2 days!
* * *
It’s a year since I went down with Covid in Cabo Verde in May 2021, 14 days after leaving the safety of 14 months’ shielding with my husband. Sampson has been so careful about not exposing me to infection, he is the only one of my extended family not yet to have contracted Covid. I am so grateful for his sacrifices. Sometimes I feel wretched that he is trapped with me in my Groundhog Day existence.
In June 2021, after a fortnight of “aeroplane legs” where it felt like blood was coagulating in my lower limbs, one evening I experienced an attack of vertigo so extreme, I struggled not to lose consciousness for 10-15 minutes despite Ruby holding my feet above my head. Since then my cognitive capacity has dropped considerably. In July in Spain I became aware that I could not hold two thoughts in my head simultaneously. In August, battling to complete my annual Severe ME Day blog while waiting to receive my first vaccine, the fog was so bad I felt like my brain was drowning. In September, I experienced some relief wearing the rigid collar to lift my vertebrae and help drain my jugular vein, as recommended by the specialist I saw in Barcelona. But still my train of thought kept falling through the missing slats in my mind.
In late October, a month after I returned to SA, I made it to an appointment with a physio who hadn’t read my links about Ehlers-Danlos Syndrome, the connective tissue disorder the Spanish surgeon told me I had, or the Muldowney Protocol he recommended they implement. After a few repetitions, I expressed my doubts that neck ‘figures of eight’ and arm ‘snow angel’ exercises were suitable for me and stopped. A few painful days later, while going up the ladder into the truck, a gust of wind bumped the door against my right shoulder. The ricochet bounced my left shoulder out, badly damaging my rotator cuff.
My body can’t tolerate painkillers, so for 4 months it was difficult to sleep and to get myself dressed. I had to support my arm in a sling while walking. It’s been healing better since March, and now I can almost do T’ai Chi properly, although I still can’t lift my arm high enough to apply deodorant or put my hand on my hip. I’m so fortunate it wasn’t my right one.
It took 6 months to find a GP willing to help me. I thought coming back from Barcelona with brain scans demonstrating evidence of Cranio Cervical Instability would make dealing with doctors easier, but in fact it made it worse! The first two I contacted via email were unwilling even to see me and insisted I should go to a specialist. I agreed, but as there are no ME or EDS specialists in South Africa, am I just supposed to endure constant pain, insomnia and orthostatic intolerance, without any medication or support?
Third time lucky, I found a young female doctor who apologised for her colleagues’ lack of compassion and even volunteered to come and see me at home! She confirmed that the shoulder subluxation last November had in fact torn 70% of the ligaments in my left arm. I know she can’t fix me but I’m hoping we will be partners in the journey to identify medications I can tolerate to ease some of my symptoms.
In the New Year I determined to concentrate on writing this book and dispense with everything else, even Patreon. But on Jan 2nd my Mom had a stroke. Though I was unable to travel back into European winter and offer any physical help, I prioritised providing emotional support for my brother who was doing the heavy lifting of caring for Mom alongside Dad for 4 months after she got out of hospital.
Sampson and I had planned to head north in March, take the truck to the KZN coast where it’s warmer, but a steering part we were waiting for hadn’t arrived. It was frustrating at the time, but now we’re glad we stayed – although hostel is a safe environment, Zola began to take strain in term 2 of Grade 12 and we realised he needed our close support to make it through Matric. Sampson has been ferrying him to French classes and delivering his own weight in noodles weekly.
I’ve gone out a handful of times this year. In Feb I joined a birthday picnic on Noordhoek common, in March I lay in a friend’s garden for a 90 min visit and in April I finally made it to the dentist – woohooooo! In May I went to Kalk Bay for the first time since completing the Africa Clockwise trip in 2019 and reclined on a padded bench in an outdoor café on a Sunday afternoon watching the world go by. It felt like a mirage.
Each time I paid heavily for travelling in the car; even lying down in the back with the supportive collar on leaves me with mild concussion symptoms that can take up to a week to recover from. So I feel lucky to be staying in this campsite, which as well as being a green oasis of calm and birdsong, is full of friendly neighbours who make me feel less isolated. About once a month, I’ve managed to walk to the beach about 500m away. Sitting on the rocks looking across to Hout Bay and Chapman’s Peak with a sliver of Table Mountain in the background makes me feel mightily blessed.
* * *
For international ME Awareness Day May 12th 2022, I wrote a piece for the Daily Maverick about the risk of Long Covid on behalf of the ME/CFS Foundation of South Africa. I started drafting it in March, did the main interview with Mlindeni Gabela online in April, but only managed to complete it thanks to being alerted to Facebook testimonials by other friends. Mostly I was unable to focus long enough to compose my thoughts and capture them in words.
Currently I feel like I’ve managed to crawl up out of a deep dark well, and am hanging on to the side by my fingernails with my head just over the top shouting out to passers-by, who seem to be wandering about carelessly, oblivious to fact that at least 1 in 10 are at risk of falling into this post-viral hole of permanent disability.
My life might look basic to you, but I am fully aware of how rich and varied it is compared to those treading water at the bottom of the well. From early April, post-booster, after a day with a hammering heart rate when my body thought I was dying, my immune system seemed to bounce out of the metabolic trap. I started sleeping through the 3am-5am wired window and feeling less nauseous, able to enjoy food a little more, walk a little further. (Please note this is not an example of Graded Exercise Therapy – it’s taken more than 2 years for my body to get stable enough to begin slowly increasing my daily steps. Any earlier would have been detrimental.)
In early May, the week after my brother returned to Portugal, my folks finally went down with Covid. My Dad of course has barely flagged, but my Mom – who had worked her way back to walking through three physio sessions a week for three months – is still flat out. I’m trying not to worry about her post-stroke vulnerability and micro-clotting until strictly necessary.
Though the mills of medical authority grind exceedingly slowly, following the delayed publication of the updated NICE guidelines last October which banned GET for patients with ME, this month an acknowledgement that ME deserves a level of research on a par with other severely disabling conditions was finally forthcoming from the UK government. On 25th May, at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis, the British Health Secretary Sajid Javid pledged more support for ME – in part because a young relative of his is suffering with it.
A significant reason I am doing better now than in 2020 is not so much physical as emotional. This winter I may only be 70% bed-bound rather than 90%, but I am at least 50% more comforted by the care and support of my husband. His attitude towards my illness has totally transformed; he is no longer living in denial or resentment and I am so thankful. This decision to make the most of it and cherish each other makes all the difference in the lives of the chronically ill. We are at the mercy of our carers and their mood affects our entire existence. Sampson’s love, tenderness and humour lift me up and carry me through.
Next weekend, when the truck finally goes into the garage, we are moving into a cottage so Zola will have a cosy bedroom for his winter holiday. We’re looking forward to our son turning 18 and our daughter 21 in the next two months, and a family reunion at the end of the year when Ruby comes home from the UK for Xmas (variants allowing).
The delight of my life right now is the family ‘Wordle Smugness’ Whatsapp group where three generations compete for glory on a daily basis. The kids are realising that their Nana wasn’t a demon at Scrabble for nothing. We crips may be down, but we ain’t out yet!