My time with chronic fatigue.
It’s time to tell you why I’ve called this blog ‘The Slow Down Kid’. I want to explain myself and also to reflect on how far I’ve come now that I’m feeling more energised and so very far from where I started and who I used to be.
Around 2 years ago I developed chronic fatigue syndrome (CFS). My experience started, as so many do, with infection like symptoms. Swollen glands in my neck and armpits, aching joints and of course, fatigue. I developed tingling sensations that would run across my limbs, as if my nervous system was alight. Not painful, just strange and disconcerting. In the early days, I alternated between periods of life and work as usual and weeks of total shutdown where my body felt as though it were made of lead and I could not get off the sofa. Sentences dropped mid air leaving me uttering only the most urgent monosyllabic words. The panic this instilled in me, as my body and mind struggled with basic tasks only exasperated the situation.
In my life before CFS I was a musician. The busy kind. I travelled a lot, always at the behest of someone else, the artist, the corporate client, the bride. For a time I wrote my symptoms off as exhaustion from too many 6am flights. Or perhaps a strange flu that refused to shift. A couple of months in however, I did what you are not supposed to do and I googled my symptoms. CFS or ME (Myalgic Encephalomyelitis) seemed to be the best fit. Long covid as a diagnosis could also have worked. These terms are loose and often interchangeable. There is no test that confirms any of these illnesses, the doctors just run out of other options. Once your blood test are negative for anything life threatening, this is what is left. The symptom that confirms both ME and CFS is ‘post-exertional malaise’. Well, that was me. When I was having a bad week, a walk to the end of the road could create total collapse. I am generally very cautious of diagnoses, not wanting to limit myself, or trust another’s opinion of my own health. However, at the time it felt helpful to have some frame of reference, to find the right advice. Some breadcrumbs towards answers, towards the help I badly needed. I mentioned what I had found to my husband and he confessed that he had come to the same conclusion a month before. He hadn’t wanted to be the one to declare it. Now we were on the same page. This wasn’t just going to go away.
I remember a girl at my secondary school who had ME. I remember my lack of understanding of this strange term and this fantasy disease that meant she had to have days off school and couldn’t play sports. I remember the scorn of my parents when they explained what it meant in their eyes. They called it ‘Yuppy Flu’. Chronic fatigue sounded less like a real illness to me and so I went for that. I felt ashamed having to describe myself as ill, as if I were weak for succumbing to something so benign and mysterious, as if it were due to a lack of character. I always expected people not to understand. Not to believe me. A lot of this is likely projection of my own shame and disbelief at the very real situation I found myself in. I don’t feel that way anymore.
The thing is… everyone is fatigued. This world is very fatiguing. There should be different words for the varieties of tired, describing intensity and cause. A word for “I didn’t sleep well last night and so I am…”. Another for “My body is completely shut down and I can’t speak.” A friend called to check in. At the end of our conversation she said “I hope you feel less tired soon” and I just wanted to scream.
So, what to do now?
Now that I had language, I could research. modern medicine does not have much to offer someone like me, so I looked in other places. I bought books on the subject, I listened to podcasts and I tried out extreme diets, some of which worked for a time. I went to acupuncture and found a herbalist. I started to meditate and I booked myself on retreats. I did it all (and in another blog, I’ll tell you all about it). But most of all, and the most difficult to master, I needed to rest. This word, rest, came up time and time again. Why did I need to rest? I didn’t work harder than anyone else. I slept 9 or 10 hours a night. I didn’t have children like others do. I was confused and frustrated. Deep down though, I knew perfectly well why I needed rest, I just didn’t feel able to admit it.
The last 7 years had been pretty heartbreaking. I lost five pregnancies, one of which was my son Indy, born at 22 weeks. Not breathing, no, but nonetheless, a beautiful baby that I love with my whole heart. The loss of him was crippling but after his death, after all their deaths, I soldiered on like the good working girl I thought I had to be. I took a little time off work and grieved and cried. But as soon as I was able, I pushed my body out of the house and into the distractions of work and play. Even before my fertility troubles, I struggled. I had bouts of depression and anxiety throughout my 20s that I never really dealt with. My childhood was stressful and chaotic (another time) to put it mildly but I never knew that I was allowed to stop, to breathe, to reset. I didn’t know how. I ignored the signs my whole life, until my body finally said no more. Enter chronic fatigue.
And so the only option for me was to slow down, to end my life as it had been, to let my nervous system recover and only then, rebuild and regrow. You cannot heal when you are in fight or flight and I had been in that state my whole life. I needed to be able to hear my body in order to help it out of trouble, and to do this, I needed to slow down, practically to a standstill, and create space.
Letting a lifetime of habits go was really tough. I remember so clearly wrapping my hands around the bathroom mirror and looking into the glass. “So, you want me to give up everything?” I asked, bereft and desperate. I felt a deep sense of loss at every stage. The career… gone. My social life… gone. Fun and adventure? All too much. The funny thing is, looking back I realise I never liked the job, I just fell into it. And the friends I had never made me feel that great, I just didn’t know how to be without them. I can have fun and adventure, it’s just a different kind now. I keep it small and so don’t get overwhelmed. I make plans with people who don’t exhaust me (the list is very small) and there is a lot of joy to be found right where you are if you just look for it. I had been living the life I thought I should have rather than one that was authentically mine. There is nothing more exhausting than living a lie. Still, making real change is unsettling and you undoubtedly grieve the life you once had and will never know again.
Now that I have ended the cycle of adrenaline I was addicted to, I see it everywhere. Our culture has a madness for productivity and doing. It is baked into our goals, rewards, our culture and even conversation. The first thing we ask each other is “what to you do for a living?” I still haven’t decided on my answer to this question. Something along the lines of “I don’t know and at the moment, I don’t care”. This fast paced life might work for some but I hear burn-out is on the rise. I would encourage anyone and everyone to slow down at least once in a while and more if possible. Long enough to earnestly ask yourself “Is this right for me?”
Over the next two years I gradually got better. I learned to ask for help and I learned to say no. The times between crashes grew and my panic when they happened receded. Often it was one step forward and two steps back. I’m not and may never be capable of living any way I choose. I have to be more careful, I have to respect my body and not push too hard. When I do cross the line, fatigue comes back to say hello. But these days, I welcome it with a smile. It’s not what I prefer, but I understand it. We have a relationship. If I act kindly to my body, it lets me be free. If I start ignoring my body, it gives me a little pinch to help me remember. I’m down for a day, I rest, reset and move onwards. This might sound suffocating but developing a relationship with one’s body is full of rewards. I love getting to know myself more, being able to feel emotions and sensations that before, I was completely numb to. It’s worth the price of being careful. For now. I am building my body’s trust. I am building strength. At the beginning of the year I decided to start movement anew. I wouldn’t push anymore, I would try out small and consistent. Morning meditation became a solid practice and I introduced five minutes of strength training every day. Lunges, press ups, stretching etc. If the week goes well, I add on a minute. Sometimes I have to pause or take a week off. Life is not linear. Even with stops and starts, I’m now up to 11 minutes a day. It sounds small, but I’ve been so proud of myself for building and maintaining a gentle yet impactful practice. It’s things like these that help me prove to myself that I can make good choices, that change is within my power, that I can increase energy while staying connected. Just think where I could be in another 6 months if I keep up this snail-paced climb.
If you find yourself on the edge, exhausted and unfamiliar to yourself, take the time to slow down and listen in. Why wait for illness to force you? Ignore your body and it might take matters into its own hands. I would never wish illness on anyone but mine changed my whole world for the better and I’m not sorry. Slowing down has been such a gift and I will remind myself of this for the rest of my life.
The Slow Down Kid 