My CFS Story
Disclaimer: This may contain what is considered "too much information"-personal stuff, or things people don't normally talk about, that may make people uncomfortable. I hope somebody finds it helpful.
I have a feeling that many people don't realize how hard it is to make it to a professional level as a tennis player, how talented the players at the top really are. I was national singles champion three times (almost four-argh) in my age group, and won international titles, and still, with so much talent out there, there was much uncertainty as to whether I'd be good enough to earn a living from tennis. And yet, I never found out if I had what it took.
Some were probably left wondering what happened to me, when I fell off the radar. For many, they just don't have the talent. Maybe others get injured, or don't have the money. Maybe others are too short, not strong enough, or not good enough mentally, when under pressure. Maybe some lose interest, and want to do something else in life besides hitting tennis balls. Maybe some don't like the lifestyle of living out of a suitcase, being away from home all the time. Some might live in a part of the world where there's not enough competition, or they don't have access to a good enough coach. Maybe others aren't dedicated enough.
As for me, it was a health crisis that took me away from tennis. I was told I had Chronic Fatigue Syndrome (CFS). I don't think the illness is very well-understood, either by society, or by doctors. I hope that in sharing my story, it will help someone with CFS, or someone who knows someone with CFS.
If you have no association with CFS, maybe in sharing my experience, I'll save you from experiencing it yourself. Maybe I'll inspire you, maybe you can learn from my mistakes, or maybe you'd just like to come along for the ride-it was quite a journey for me.
What caused it?
This is speculation, but here are some things that may have caused it. Perhaps it was a combination of some of these things. Naturopath Robyn Chuter called it the "perfect storm."
I'd lived a very active lifestyle. (More about that here.) I suppose we all have a limit to our energy, and I used mine up?
Maybe I got a bug at some point during my travels? When I was younger, I had great endurance on the tennis court. When I was older, I lost matches due to fatigue (although I was playing at a much harder level).
Emotional stress. Starting from around May 2008, I was depressed and anxious for several months. And in the months leading up to CFS, I was feeling under a lot of pressure to make it as a tennis player.
At the end of 2008, I started working really hard on my fitness, because I was losing tennis matches due to fatigue. My parents had told me that I had around 6 months to start earning enough to pay for my tennis expenses (or something along those lines-we remember it differently). Tennis had been my life, my identity. If I was to no longer have tennis in my life, what would I have? I'd been at it for years, and I didn't want it to be over by either quitting or failing. And so I would kill myself at the gym in those months to come, like it was my last hope, my last chance.
My periods stopped. I think it may be a common thing amongst athletes who are training hard. But my strength and fitness improved. After a while, people at the gym seemed impressed by what I could do. I think I rarely had a day off training, and I may have been the strongest and fittest I'd been in my life, and still getting more so. In June 2009, I got what seemed to me like a normal flu. (Although CFS specialist Professor Lloyd wasn't convinced by my description.) One time I'd had what I thought was a cold, and I'd trained through it, which I thought may have actually helped me, rather than hindered me. I felt like I was running out of time to make it as a tennis player, so I didn't want to lose training time because of a flu. And working out had also become one of my best defences against depression and anxiety, so I was afraid to take a day off my workout. I tried to keep training and competing. Instead of getting better, like every other time I'd been sick in my life, I got worse.
Food poisoning. While at a tournament, I ate a chicken wrap, and afterwards, felt horrible. Still, I tried to compete, but eventually withdrew from the tournament, threw up on the bathroom floor, cleaned it up, packed up, and flew home.
Much later down the track, it was found out that I had an underactive thyroid and, thanks to my mum (the doctor didn't think of it), I was low on iodine.
Post Viral Fatigue
After that tournament, I still kept trying to play tennis. But I would get dizzy on the court. I felt like I needed to be horizontal instead of vertical. It took an unusual amount of time to recover after I would play.
My doctor labelled my condition as "Post Viral Fatigue," and said they usual call it "Chronic Fatigue Syndrome" after 6 months. I don't think she had much in the way of advice, other than, "It takes time."
I went a whole night without getting to sleep. I didn't really feel like I needed it, or that I would get to sleep that night. I would often feel more awake and energetic at night than I would during the day. Taking hours to get to sleep would become a regular occurrence.
At times, throughout my journey, it felt like it was taking all the energy I had, just to be. It felt like my heart was struggling to do its job of keeping me alive.
My body didn't handle food very well.
I would often not be able to hold a conversation for long. I couldn't concentrate for long. When someone would talk, they might as well have been speaking another language-it was hard for me to hear their words and process them into what they meant.
I had to be careful with how I moved my head, not turning it too fast.
I found travelling tiring. I'd also get motion sickness, although not always. Trips that involve stopping and starting a lot seem to be more difficult than smooth travelling.
I started finding it irritating when someone had the TV playing. I felt like I needed to escape the noise.
I'd be lying down resting, feeling like there were little creatures eating away at my muscles. I don't think it was painful. But it was uncomfortable, and felt like my strength was being zapped out of me. I wasn't always in this state of discomfort. I think when it happened, it was generally after I'd exerted myself too much, which wasn't hard to do. Sometimes though, I felt a sweet, tingly sort of sensation throughout my body as I rested. (After I'd eaten oranges?)
Bedwetting was quite a big problem. Waking up cold and wet in the middle of the night didn't feel very good for my sleep, and having a stinky mattress probably wasn't good for my health. I'm not too sure if bedwetting was a symptom of CFS for me. I heard of someone else with CFS who said it was a symptom for them, but for me it has been a lifelong, on and off problem, although much worse during CFS. Drinking one-pound-of-baby-spinach smoothies before bed may not have been such a good idea. ;)
I think I've heard there may be a correlation between CFS, bedwetting, bruxism (teeth grinding), and snoring. Based on jaw pain I've experienced, as well as wear on my teeth, it seems I'm a teeth grinder. Back in tennis days, my roommate would try to wake me up in the night, because I was snoring. I don't know if I still snore.
I would often, but not always, feel like I couldn't breathe well, that it was hard to take a deep breath in. I still feel this, and it feels like it's hard to think when I'm like that. I do have an enlarged tonsil, which may block my airway, but I had that as a tennis player, too, and it feels more like the problem has something to do with my spine. I don't think a sedentary lifestyle helps. In recent times, I've come up with movements that provide relief, although I'd like a better solution. One of those ways, as my brother would refer to it, is standing in a doorway and "wobbling." :)
It seemed fruit was about the only thing my body could handle, and so I ate accordingly. I didn't have much appetite. Emotionally, I felt better than I had when I was "well," and since my body could handle fruit, but not other things, I read The 80/10/10 Diet by Dr. Douglas Graham, and was inspired to embrace eating raw vegan.
My dad, a passionate carnivore, who would say, "If there's no meat, it's not a real meal," wasn't sure if eating that way would be good for me, and so he decided to mimick my diet, to see what effect it would have on a "well" person. He became really skinny, and had less energy. For me, how I felt after what I ate was enough of an indication of how I should eat. But my parents were more interested in the science than I was. As a result of my experience, my mum did a lot of reading on the subject, she and my dad switched to cooked vegan, and have been that way for several years now. My dad noticed better health than what he had had on a carnivorous diet, and my mum has become quite passionate about the benefits of eating vegan, seeing that what many would consider inevitable, normal symptoms of "old age," could actually be preventable with a healthy diet.
I stuck with raw vegan, but eating that way didn't cure me. My mum spoke with Dr Graham, who suggested I try fasting, if I didn't get better with lots of sleep.
Over time, I would keep discovering new things that I was sensitive to, that would set me back. I was sensitive to seeing things move (pet fish), or being shocked (neighbour's cat darting across the lawn, or family appearing at the door without notice), electronic screens (computers, iPhones), light, heat, vibrations (car trips), and I think even company at one point, even if nothing was said.
One night, as I was lying in bed, my brain felt strange. I felt like I wouldn't be able to talk if I tried. I headed out to the kitchen, and wrote on a bit of paper to my parents, explaining that I felt unable to talk. My dad put his arm around me and prayed, and I went back to bed.
I wondered what in the world was happening to me, and I didn't know if I'd ever be able to talk again. It was scary, but I stayed pretty emotionless. I figured I couldn't afford to waste energy panicking over it. I figured I had a choice-to trust God, or to not trust him, and that I might as well trust him. I could barely think, and my brain couldn't make it much more complicated than that. I also had a sense of adventure, awe, and fascination over what was happening to me.
I think it was the following day where I began to feel my ability to talk come back. I was in a pathetic condition, but I was overjoyed to be able to talk again.
Being unable to talk, or at least, feeling unable to talk, would become a recurring thing for me. We'd call it a "crash." It would feel like the left half of my brain had gone missing, like my brain couldn't signal to my mouth to speak. Eventually, I would begin to feel the left half of my brain fade back into existence, and could talk again a little bit, and then more in time.
The first time it happened, I'd had a friend come to visit that day, for maybe a couple of hours. Apparently, that had been too much for me.
Later on, there were fireworks on New Year's Eve, and I discovered that too much noise could also trigger a crash for me.
There were physical "crashes," too, which would look something along the lines of lying down a few metres from my bed, because a few metres felt too far to go, or using walls and furniture for support when getting around the house. Brain crashes seemed to result in physical exhaustion, too.
It was a bit of a guessing game at times, as to what had set me back. It took time to figure out all that I was sensitive to. I would ask myself, "What have I done differently, or what have I been exposed to?" It was often, but not always, the day after the trigger, that I would feel the effects. One time I woke up feeling setback (When it wasn't so severe, I'd call it a "setback," rather than a "crash."), and I thought it had been due to a neighbour mowing their lawn in my sleep. Normally I'd close the doors to block out the noise, but since I was unaware at the time, I'd left them open.
I went to the fasting retreat recommended by Dr Graham, and fasted for almost 4 weeks (26 and a half days. That final half a day was HARD.), starting in November 2009, under the supervision of Dr Alec Burton, who had agreed on a previous visit that I had Chronic Fatigue Syndrome.
I found it incredibly difficult. The hunger was hard, but there was also the boredom (I was in bed all day and couldn't do much, and I didn't sleep much at night. 2 days would feel like about a month.), and the extreme weakness. I didn't know if my body had the strength to keep living.
I made it through the fast, and food tasted absolutely amazing. Bananas reminded me of caramel. Alec thought that fasting actually improved all the senses, although he wasn't sure about touch. My sense of smell seems stronger than average, too.
My days fasting would look something like this:
"Let’s see, what time is it? 12:00pm. Four hours till 4:00pm. Let’s kill the next 4 hours by lying in bed with nothing to do."
"I made it to 4:00pm! Only 3 hours till 7:00pm. Let’s kill that time by lying in bed with nothing to do."
"Let’s kill a bit more time until it’s bed time!"
Bed time comes.
"Now I have a whole night to kill!"
I'd change the scenery a bit by moving outside. Visits from my parents were precious. My mum would come every day that she could.
My brother and I would send amusing images back and forth to each other. One such image he sent me looked something like this:
I wonder how popular number 6 was. :)
Fasting didn't cure me. But it felt amazing-refreshing, restful, and healthy.
I stayed at the retreat for an additional 2 weeks, while I was transitioned back into eating. Alec was very supportive of eating only raw plant foods, but was also OK with cooked plant foods, and suggested tweaks I make to my diet.
Another thing I noticed about fasting, was that it made me lose weight. Surprise. ;) I could be wrong-I don't remember the numbers too well-but I think I may have been around 70kg before CFS, 60kg before fasting, and 50kg after fasting, just after I'd started eating again.
Sadly, Alec passed away in 2016, after a tragic bike accident. He had a warm personality, and felt like a grandfather to me while I was there. He was considered a legend, and a tribute to him can be read here.
Nejla, his wife, still runs the fasting clinic. Website here.
When I returned home from the retreat, life was tough. I was extremely sensitive to noise. It had been quiet where I had been, and I came home to neighbours who would regularly play music, which was a huge obstacle for my recovery.
I was easily stimulated. Having my parents in the garden felt somewhat reminiscent of being a kid at a birthday party.
I was sensitive to the air inside at home. It felt too stuffy, not fresh. And so I started living and sleeping in the backyard. Right near those noisy neighbours, who also smoked.
My health was dependant on those neighbours. Aeroplanes also gave me a lot of trouble.
Eventually, I think on a particularly bad night of partying from the neighbours, when I was tired of putting up with it, and feeling desperate for a quiet place to rest, I "discovered" a place in the house that was away from the rest of the family, and where neighbours could cause me less trouble. After I moved in there, life was a lot more predictable, and my health felt a lot more in my own hands. The bed was also more comfortable than the outdoor bed I'd been sleeping on, which may have helped me sleep better. (I've since tried for a while sleeping on the floor, and may do so again. Currently I use a mattress, but no pillow. I experiment. ;))
What else did I try?
I felt that going to health professionals would take too much out of me, and set me back. When taking a trip to my GP was daunting for me (about a 5-10 min walk away), my GP came to me instead, and referred me to Professor Andrew Lloyd, who specializes in CFS. I remember joking with my mum before my scheduled appointment with Profressor Lloyd, saying, "Wouldn't it be funny if I cancelled my appointment with a CFS specialist...because...I had CFS?" :)
I saw Professor Lloyd in November 2010, and I think he was helpful. My parents found it helpful because they were encouraged to hear that people do get better from CFS eventually. I sort of already believed it, although I suppose it was good for me to hear, anyway. But I think he also gave good advice.
He also had a clinic for helping people recover from CFS, but I didn't feel as though it would be worth the difficulty in getting there, considering my health at the time. And by the time I would have considered myself well enough, I felt like I knew what I was doing, and didn't need it.
Ashok Gupta's program. It drove me a bit crazy at times. He had this "amygdala retraining technique." Maybe I wasn't doing it properly enough, but I grew tired of constantly interrupting my thoughts in order to "retrain my amygdala." Maybe I misunderstood, but it seemed I was supposed to interrupt any "negative" thoughts, distract myself from those thoughts, and replace them with something positive. Whereas I felt as though I needed to hear my own thoughts, and be honest about them, that the "retraining technique" was making me unable to think freely, and that it was better to get to the root of my "negative" thoughts/beliefs, rather than distract myself from them.
And at times, I found the meditating frustrating, rather than calming, when I felt like I had energy, and just wanted to get something done. I prefer to get outside and look at nature when I need calming down, rather than sitting with my eyes closed, focusing on my breath, because I'm following a program that tells me when or how often I'm supposed to meditate.
But, well, maybe his method helped me in some way. It seems to have helped others. I liked imagining being well, which was part of his program.
She's a naturopath who does appointments by Skype, handy when travelling is difficult.
She "believes that the body has the ability to heal itself given the right natural approach," and would give me vitamin C injections (and some other vitamin at one point, I think). But if anything, I was worse after getting them. Perhaps it was due to the rigmarole of the whole thing (travelling to the doctor, for example), not the injections themselves?
Dr Trent Banks (Chiropractor)
He told me my brain was "fried." :)
He also mentioned something along the lines of a practitioner who would treat people who had CFS with thoracic adjustments, that there may be a correlation between CFS and breathing trouble.
I didn't see him many times, because of the travelling required to get there, but he impressed me. I think his treatment may have helped the CFS, and perhaps I should have kept going. I think he helped my neck, too.
Suzanne Middlemiss (Physiotherapist)
I saw her for the dizziness, although I don't remember noticing improvement with that from the treatment she gave me.
Sue was my long-time physio when I was a tennis player. I spent many hours at her clinic. After I stopped playing tennis, I stopped getting injured, but I missed going there. I thought she was awesome, and clearly cared about doing a good job.
I think her treatment was also helping with the bedwetting, but when I got CFS, I felt too tired to do it.
Sue was also responsible for starting me on my barefoot journey. Other practitioners had given me orthotics, or told me I had flat feet and needed arch support. Sue pointed me in the other direction, telling me that she had never seen a baby born with shoes on. I remember I was at a tennis tournament, playing in pain, and I switched to less-supportive shoes, and there was a noticeable improvement. I tend to take concepts to the extreme. I'm not sure if she'd want to be associated with my barefoot fanaticism. But I'm glad she pointed me in that direction. ;)
Peter Kelly (Naturopath)
I don't think I tried what he gave me, because I thought something in the ingredients seemed like a weird thing to be putting into my body. :)
He also encouraged me to be patient, because, "These things take time."
His website is here, but according to that, he's now retired, but he has recommendations of other practitioners on his page.
Stephanie Le Coz (Chiropractor)
Not to say she isn't a good chiropractor, but she seemed a bit in denial of my condition. She treated me in a way that I think, from memory, seemed to me to be much like her usual treatment, and then said, "Welcome to your new-found health!" I found that a bit annoying.
I read Leigh Hatcher's book.
I'm Not Crazy, I'm Just a Little Unwell: My Journey Through Chronic Fatigue Syndrome
It might help people who have CFS to feel less alone, or to help those who don't have it to understand it better, although I don't think all CFS stories are the same-his story seemed quite different to mine.
The Journey Upwards
Acting according to what I'd done, rather than my perceived level of energy
I had to become very familiar with my limits. Perhaps one of the biggest mistakes I would make when I was inexperienced was acting according to how I felt at the time. I would feel energetic, and so I would be energetic. I'd get over-confident and think, "I'm better, now!" But how I felt was deceptive, and I would later suffer. Over time, how I felt became a more reliable indication of what I was capable of.
I also seemed particularly prone to overexerting myself right before my periods. (They came back.) I would feel particularly energetic or strong, or like I needed to move. I think becoming aware of that helped me to be more cautious, perhaps helping me to avoid future setbacks.
Instead of acting according to my perceived energy levels, I needed to act according to what I had proven I was capable of recovering from. So in order to train for an activity, I would start out with an amount of that activity that I thought would be very comfortable for me. Then I would have a rest from that activity the next day, to give myself the chance to recover, and to make sure I was ok with that amount. Then I would soon do that activity again, but a larger amount of it, trying not to increase the amount by too much. So it was very controlled. Progress was slow. But slow progress was much better than doing too much, crashing, and having to start all the way back at the beginning, which was pretty devastating. (The crashes and setbacks were why CFS was such a long journey for me.)
There was still guesswork on my part, and risk in deciding to do an amount that was greater than what I had done before, but once I was made aware of the principle above, I think setbacks became rare, and I think I may never have crashed again, and progress was more of a consistent journey upwards.
This principle applied to all kinds of things-physical activity, noise exposure, car trips, etc. Those "very comfortable" amounts were quite amusing at times. For bike riding, I started by turning the pedals around in two full circles. For car trips, I started with my dad driving me out the driveway and back in. :) And training for social interactions (other than with my family) began with a 2 minute visit from a friend, with my mum or dad watching the time.
Initially, I couldn't afford to get tired, or I'd be in danger. But over time, I became able to tire myself more and more, and still recover, and I became able to do things 2 days in a row.
I think my dad deserves credit for helping with my strategy, and my awareness of what was happening. I'm not sure if I would have noticed things, or thought of things, if he hadn't have pointed them out to me.
I think Professor Lloyd was helpful with the strategy, too. When I saw him the second time, in August 2014-nearly 4 years after my first visit with him-he told me, "Try and crash." Not what I was expecting. He'd asked me if I felt refreshed after a night's sleep, and I told him I did. I think this convinced him that I wouldn't be able to crash, even if I tried. Maybe encouraging for me, although, with the number of times I was overconfident and did too much and crashed, and with the time it had taken to progress to where I was, and the steady progress I was making in doing what I was doing, I wasn't very keen on actually trying to crash.
If I knew I had a big event coming up, it was important that I took it easy the day before, and the day after the event.
The key was balance. If I did too much, I'd go backwards, but if I did too little, I don't think that really helped me progress. It seems there was a kind of training needed for all kinds of things. The solution wasn't to avoid the things that set me back altogether (although maybe true when I was really bad), but to control my exposure to those things, and slowly recondition myself to be able to handle greater amounts of them.
Finding things to do
I began doing jobs around the house-washing, cooking, ironing, gardening. I developed an interest in the birds that I was seeing in the backyard, Googling them out of curiosity. And I taught myself new hobbies. I did a lot of reading, starting out with Snoopy comics and children's fiction (The Chronicles of Narnia was a favourite.), and working my way up to books on faith, that took more brain power, and that eventually were a major influence in me questioning everything I'd been taught and believed. But that's another journey.
Eventually, I felt able to study for a job. I began an online coding course in December 2013, and later got to the point where I would code for probably more than 40 hours/week. I think I would have found coding challenging before CFS, so, considering my "fried" brain, I'd come quite a long way.
Once I reached the point where I could occupy myself all day, life became a lot easier. Before this, I think it was more tempting to do too much, perhaps due to boredom, and time ticking away so slowly. It was also nice being able to put my attention on something other than my own health. Having things to do to get me out of bed during the day may have helped me to sleep better at night. And doing things I enjoyed doing made it easier to get out of bed.
When I reached the point where I could exert myself, where I could actually feel like I was getting a physical workout, and still recover, progress was better. The difficulty, I think, had largely been due to not being able to tire myself, and therefore not sleeping well at night. (It used to often take hours to get to sleep.) But when I started working out, I started sleeping better, which I think resulted in more energy.
I was told to go to bed early, but in hindsight, since it would take me so long to get to sleep, and since I would generally feel more awake and energetic at night, I'd be interested to know what difference it would have made if I'd stayed up until I was tired, instead of going to bed because I was "supposed" to. I wonder if I would have slept better, and therefore had more energy. Maybe a bad idea-I don't know.
When I started to get more active, I began having food cravings. I added cooked plant foods into my diet, and the cravings went away. I think I stayed that way for around 6 months, but had a lot of trouble breathing through my nose-a problem I didn't remember having on raw. So I switched back to raw. My breathing didn't improve straight away, but I felt better. I felt better emotionally, and was glad to have that light feeling back again. I also lost weight when I switched back to raw. Eventually, I could breathe better again. Whether or not that was the diet, I don't know. Later, when I started taking calisthenics classes, I felt like I could do with some extra help than what my diet was giving me. So I again added cooked veggies into my diet, and this time, raw oat groats. I don't know if eating raw oat groats is a good idea, but my body doesn't seem to be objecting to it, and my strength and fitness have been improving.
When it was found out that I had an underactive thyroid, and I was low on iodine, I started taking an iodine supplement (thyrocsin, NOT thyroxin), as well as, at some point, some kind of seaweed, got tested again, and my thyroid hormones were normal this time.
For a while, I felt like my brother's weekly chiropractic treatment was one of the things that helped the most. He went away at one point, and I noticed I felt worse.
My brother's website (made by me ;)) is here.
Social events were hard to attend. Skype has been a helpful alternative.
I've found it easier to travel by train instead of by car. Less motion sickness. (As well as more comfortable, because I can move around.)
I've found keeping my eyes open while travelling helps with the motion sickness.
Being outside in nature felt therapeutic.
If going to an event, I take a seat in the back row, so I can lie down behind the back row and shut my eyes, while I still listen.
CFS is an isolating experience. Facebook has helped me feel less alone.
I discovered blood tests were easier to have if I was lying down. I'd feel faint otherwise.
Although by far not enough of a help, chewing (crunchy things like carrots or kohlrabi) during noise exposure seemed to give me some feeling of relief.
I found stretching to be therapeutic, to have a calming effect, and help me breathe more deeply.
I've found lying on my stomach feels better for recovery than lying on my back. Not sure if it's good for the neck, though.
I found it helpful to be told in advance if I would be expected to do something out of the ordinary. It gave me time to play it out in my mind, which I think made doing it for real more like second nature, and to consider obstacles that may arise, which I think would help me feel more prepared for the situation.
I kept a journal of activities I did each day, in the hope that having a record of what I was capable of might help me not to overdo things, or that if I experienced a setback, I could look back and see what may have caused it. It was also nice to be able to look back and see how far I had come.
More On Noise
Noise sensitivity has been one of the hardest things about CFS. Depending on the volume and the type of noise, it could make me feel awful. And it was often hard to escape, and would just keep coming. It felt like an attack to my insides, that it was somehow causing damage, and I'd feel quite defenceless. I think it would at times bring a wave of depression over me, or it would make me feel stressed, and not necessarily for any logical reason. Those feelings would pass when the noise stopped.
The worst things were things such as aeroplanes, drum beats, TV noise, or lawn mowers. But I also had trouble with things like kids playing next door, or my family talking, even from a distance. One time, I felt sensitive to the sound of my dad watering the lawn. I don't remember having much trouble with rain, though, so maybe that one was just in my head? I suppose when I was aware that too much noise could have serious consequences, it was understandable being paranoid about it.
Ocean waves were fine. They actually felt good. I would have them playing on repeat, with my noise-cancelling headphones, to block out other noises. One time, there was a lawn mower going somewhere in the distance, probably not all that loud, and I had ocean waves playing really, really loudly. Bird noises were usually fine, too.
My noise-cancelling headphones became like part of my anatomy-I wore them during the day, sometimes I wore them in bed, lying on my back, waiting for noise to stop so I could roll over and get a better rest. I wore them when talking with people, at church, and when meeting new people. I sort of assumed there was no need for an explanation, that rumor would have spread about the weirdo who always wore headphones. But I'd get asked, "Why are you wearing headphones," or, "What are you listening to," and I think on more than one occasion, that was when I had the cord dangling down visibly, unattached to anything. :)
Eventually, Dr Trent Banks did a test on me, and told me my noise-cancelling headphones weren't good for me, and so I slowly worked my way off them.
It was quite a milestone for me when I left home without my noise-cancelling headphones in August 2012, for the first time in what I think may have been two and a half years. (Knowing that too much noise could cause me to crash, and not be able to talk, meant that I would have considered it a very bad idea to go out without them, if I wasn't well enough.)
I've still used noise-isolating earphones to make things quiter. (Noise-isolating earphones are different to noise-cancelling ones in that they don't use some fancy technology to cancel out the noise.)
I frequently ask my family to talk quieter. I wonder why they have to talk so loudly, when they are talking to me, and I'm in the same room as them. To them, it's like, "Was I talking loudly?"
More On Concentration
I would often have my family talking with me, and I'd tell them it was getting too much for me. Not necessarily because I couldn't hold a conversation, but because I felt tired, or that my concentration was declining, and knew if I pushed myself to continue the conversation, I risked crashing.
Early on, I think even when I would feel too exhausted to have a conversation, there was a part of my brain that felt like it could still work. I would play a lot of my favourite computer game, which was a strategy game, involving a reasonable amount of thinking.
My dad encouraged me to stop playing that, I think suggesting that I should either be resting, or doing something more "fulfilling."
I'm not sure if that was good advice. I stopped playing, but I don't think I really knew what I was capable of doing that would be productive. And so I think as a result of this, I spent more time in bed, when I would otherwise have been playing my game, and spent more time outdoors doing nothing, like looking at a bit of grass.
I do think rest was important, and it was probably good for me to learn to slow down. But the exhaustion I would feel often didn't feel like an I-need-sleep exhaustion. And by no longer having something to keep me occupied, as well as the time I spent doing nothing while I fasted, I wonder if there was a kind of use-it-or-lose-it effect.
Further down the track, my mum would give me appointment reminder cards to stick stickers on. When I first started doing that, a few minutes of it felt like a brain training exercise.
Watching videos was more taxing than reading on digital screens. Listening was easier than talking. Listening was easier than reading, but other times, I think it was the other way around.
More on Digestion
Digestion was often uncomfortable. It felt weird, perhaps hard to describe. It felt like food would get stuck along the way. (I suppose my sedentary lifestyle didn't help.) Or that my digestive system contained knots? Or that food would be floating around outside of it, where it wasn't supposed to be? Actually, when I was fasting, it felt like I had uncomfortable "digestion," too, although I suppose whatever that was wasn't digestion. I think some foods were more likely to give me trouble than others, and blending things may have helped. For example, I think bananas blended with water were pretty safe, whereas unblended raw carrots were more likely to give me trouble.
I tried for a while sleeping on my dad's inversion table (with buckets of sand to hold it in place), so I'd be a bit more upright, in case that helped my digestion. I don't think it felt ideal. One time, the inversion table swung back suddenly, while I was on it, and set me back, I suppose because my head was so sensitive to being moved.
What was it like for me?
Early on, it was an onslaught. I felt like I was pushed beyond what I knew I could take.
In The Voyage of the Dawn Treader, there was a man named Lord Rhoop, who had been in a land where nightmares became reality, a place about which it was said, "There are some things no man can face." He was taken to a place where there were three Sleepers, who had been in an enchanted sleep for seven years. Lord Rhoop was invited to share in, "what he needs most…sleep without stint or measure, and sleep in which no faintest footfall of a dream was ever heard," and to, "sit beside these other three and drink oblivion..."
I felt somewhat like Lord Rhoop-I felt like I'd just been through too much. Noise. Crash. More noise, before I'd recovered. More crashing...How much more of this could I take? I was worn down. I felt like I could do with a few years of sleeping. Thankfully, it wouldn’t take that long till I would feel refreshed, ready to go at it again.
Later, life became a lot easier, and I enjoyed learning new hobbies. And being able to do things that I hadn't been able to do for so long was amazing. I could actually help somebody! And I can push myself now!
Before CFS, I'd felt like I was "behind" in life. I was older than others who had already turned pro. I'd finished school a few years late because of tennis. And the longer I went on as a tennis player, the more "behind" I would be, if I wasn't to make it, in terms of my next career.
The many, many hours spent lying in bed awake, listening to my own thoughts, processing my life, felt like a much-needed thing for me. I felt in a better place mentally and spiritually than I had before CFS. There wasn't time to think before, and I felt like I had to block out certain thoughts or emotions, or they'd affect my performance-for example, I don't think questioning the foundation of everything I believed, and having the rug pulled out from under me, the night before a final, would have helped me play well. So maybe issues would get stuffed inside. It was nice to finally have time to think.
What was hardest?
Noise. Crashing. Not being able to talk. Boredom. Feeling incapable, dependant, and like a burden on society, rather than a contribution. Progressing slowly, then having to start back at the beginning. Taking hours to get to sleep. Extreme weakness.
Not being able to exercise. I would feel like working out. It was hard to resist that urge. And exercise, what was once my defence against depression and anxiety, now seemed to be detrimental to my mood. After exercising, I'd feel kind of like my energy tank was borrowing fuel from my happiness tank, and I'd feel too exhausted to reason with troubling thoughts that would come to mind. That was quite frustrating for me, since I love exercising. Thankfully, in recent times, I've once again started to feel exercise having positive effects on my mood.
The longevity of it. I had a deep longing, an achiness inside, to be well again.
What I learned
I'm not superhuman. Tennis coaches would encourage me to think I was, teaching things along the lines of setting goals for myself that were several times greater than what I thought I was capable of, that I should be able to stay up all night, and still play my best tennis the next day, or that I could achieve anything if I put my mind to it. It was more about defying my limits, rather than respecting them. I learned the hard way that I do have limits, that I'm not superhuman.
I don't think I'll be eating chicken again.
I learned to rest.
Fitness doesn't necessarily mean health. I think I may have been at my peak fitness level at the time my health fell apart. Although I do believe fitness is required for optimal health.
Life is fragile. Life is short. It challenged me to ask myself what's important in life.
It gave me a degree of empathy I hadn't had before. Previously, I think I would have felt uncomfortable and awkward if I was with people who were suffering. My own experience made me realize how precious it was when someone simply kept me company, even without words, and I now find joy in grieving with others, in being with them in their suffering.
Ants are strange. ;) When I was fasting, I'd get this white, yucky-tasting gunk on my tongue-toxic stuff my body was trying to get rid of. The ants were attracted to it. :)
How did I make it through (emotionally, mentally)?
Somehow? I'm a bit surprised I did. CFS was a tremendously difficult struggle for me.
People would comment on my good mood. Yes, I was in a good mood when I was around people. And when Professor Lloyd asked me how my mood was, I told him it was pretty good-it generally was, especially considering my situation. I still had my sense of humour. One time, after my dad had visited me for a short time while I was in bed, he said to me, "Well, I hope to see a bit more of you tomorrow," to which I replied, "You want to see my legs tomorrow, too?" :)
But I wasn’t always in a good mood. Crashes would crush me. They were depressing. But I didn’t want to burden people with my presence when I was feeling down, so I would lie there, resting for hours, and eventually the depressing feeling would pass, and I’d psyche myself up for yet another long, slow journey ahead, another attempt at victory.
Although I no longer had exercise as my defence against depression and anxiety, my diet, as well as an abundance of lying in bed with my eyes closed (It wasn't necessarily sleep, but it was still refreshing emotionally.), seemed to make up for it.
I believed in a God who loved me. That belief was not dependant on having a trial-free life. I believed, in my own words, that, "If my life was a house I'd built, God had sent a tornado along, so that he could build a better one."
I had a family who loved me. I actually got to spend more time with them, since I was no longer travelling to play tennis.
I knew from my tennis life that good things can come from hard times. Just before CFS, I'd heard the words, "Don't waste suffering." I think that helped me through the difficult times.
I'd been through depression and anxiety before, and was determined not to go there again.
Being outside in nature, or listening to ocean waves, helped me feel better emotionally.
It wasn't constant suffering. I would have periods of relief.
I wanted to live on, so that I could make a positive impact in the world.
Where am I now?
It was June 2009, when I was 20, that I got the flu-like symptoms. I'm writing this in February 2017.
A lot of the symptoms subsided over time, or went away. Or, maybe it's that my threshold to triggers has increased, and so it just takes more of a trigger to trigger a symptom, an amount that is greater than what I normally expose myself to.
I created for myself a very sheltered life. So there are still things that I don't know how I would cope with. But with my sheltered life, CFS isn't on my mind much-I feel like I have a pretty good idea of what I can do, and it's not often I feel like I'm exposed to too much.
Noise is still an issue, but it has been years since my last crash.
I can train myself to physical exhaustion, but I think it still takes me longer to recover, and that I need more sleep, than I would without CFS.
Since travelling was difficult at the time, I learned to code, something I figured I could do as a job from home. It has been harder than I thought to find remote work as a programmer, and the thought of working 40 hours/week, away from home, with no bed for a daytime nap, feels a bit daunting.
Did I find it hard switching to a diet of only raw plant foods?
No. I didn't want to eat foods that made me feel sick.
It would have been nice to have discovered this way of eating sooner. Maybe it would have improved my performance as a tennis player, or helped me feel better for life.
Previously, I'd eaten a certain way, or taken supplements, because some expert had told me it would be beneficial to me. Whereas in eating a raw plant food diet, I actually felt the difference myself. That was nice.
I considered discovering this way of eating to be one of the benefits of me getting CFS.
Maybe I felt better emotionally because of the extra rest I was getting, or maybe I was excited about the adventure I was having, with the unknown ahead of me. But I think it was the diet, too. I'd noticed before CFS that what I ate affected how I felt. I think eating lots of fruit helped me overcome depression and anxiety.
At times I have missed foods, such as cereal, cheese pizza, or omelets. But I don't consider the temporary pleasure I might get from eating them to be worth what they could do to my health.
Was it hard saying, "Goodbye" to tennis?
I loved tennis. Before CFS, I was really attached to it, and afraid of having to say, "Goodbye"-the reason I trained so hard. But there was so much drama going on with CFS, that it distracted me from what I suppose would have otherwise broken my heart. Survival was a bigger concern. Tennis felt like another existence. (Had I really been a tennis player?)
Also, I felt a lot of pressure lifted from me-pressure from my parents, as well as pressure I had put on myself. My dad had been my coach. He was awesome. But he was hard on me at times. He'd tell me I was moving like a hippopotamus. (I believe they are actually quite fast. :)) I'd be moving sluggishly (Perhaps that would have been a better analogy.), after training hard the previous day-perhaps an indication of what was to come. I felt a duty to perform. When tennis was over, my dad got to be just my dad again.
And I think I would have had a very, very hard time being OK about not making it as a tennis player, if I had have either quit or failed. In other words, I suppose I would have been hard on myself, and considered myself somewhat of a failure. CFS gave me a way of escape, and time to process my departure from tennis.
The lifestyle wasn't for me, either. I hated travelling (with my parents was a different story, but they rarely came with me), I'd get homesick and lonely, and I hardly had friends, because I wasn't around much. I'd determined to not let things like that get in the way of my success though. So there was actually relief in being forced out of the life I'd been living.
Could I get back into my tennis career? Do I miss tennis?
In theory, if I worked my way into it slowly and sensibly, then may...be...I could get back into it (*grimace*). But I don't want to. For me, that would be resuming the very thing that caused me so much torment, in that, I believe, it led to CFS.
My competitive nature is so strong, I don't want to put myself back on the tennis court, in a position where I may be tempted to push myself too far. I loved the tennis. But I'm content in no longer having it in my life.
Calisthenics is becoming my thing now, and it feels much more controlled than tennis. With tennis, a match could go for 1 hour or 3 hours. I could lose first round and be done in a day, or I could win the tournament and be at it for a week.
And it was such a demanding lifestyle, even before CFS. In hindsight, it seems like abuse, not healthy. (I reckon some of the top tennis players may have had something similar, sometimes labelled something along the lines of a "mystery virus." It seems to be the people who push themselves hard that get this kind of thing happen to them.) It felt bad for my posture (forward shoulders, repetitive movement, and muscle imbalances), and like it has taken a long time, with lots of stretching, to undo the effects of my tennis life, and maybe it still isn't all undone. Calisthenics feels much more balanced-out.
And towards the end of my tennis days, I would actually enjoy working out more than the tennis training.
And even with the degree I was pushing myself, I wasn't yet making a steady income from tennis.
I have really missed the competition though, and the emotional ups and downs, the pressure of being down match point, and finding my way out of it-that sort of thing.
When people didn't understand
I think I may have had it easier than some in this regard. Maybe because my life was so sheltered, so I was isolated for a lot of the journey.
Friend: "What did you do this week?"
Me: "I watered the plants in the garden." (An achievement!)
Friend: "Is that all??"
I thought she knew about my condition. But apparently, not very well. That I actually had excess energy to spend on doing something besides surviving and looking after myself, was progress!
Friend: "I wish I had Chronic Fatigue."
LOL. I don't think I really let it get to me. I suppose it was understandable-I had a lot of time on my hands. But I'm pretty sure my friend wouldn't have wanted to go through what I went through to get there.
Friend (on Facebook, whom I hadn't seen in a while): "How are you?"
I told her how I was, and never heard back. Maybe I made incorrect assumptions as to what that meant, but it hurt a bit at the time.
Suggestions for how to help someone who has CFS?
They may be different to me, so I may not be able to speak for them. But if they are like I was, and, assuming they're not at the point of "training" for any of these things:
Don't visit without notice. Visits are lovely, and it's sweet that you care, but not helpful to have an unexpected visit. They may not be well enough, and it might not be easy for them to ask you to leave. If you do visit unexpectedly, ask if they are up for it-don't just arrive, start talking, and assume they are.
Talk quietly. ;) If you're not sure what "quietly" is, just ask.
Don't have music or the radio playing.
Drive smoothly, not like my dad, when he can't decide where to park. ;)
Don't assume that they have something against you, if they aren't spending much time with you.
If your neighbour on side A has CFS, and you have a fight with your neighbour on side B, don't turn your radio on, blasting it at full volume all day, in order to get back at your neighbour on side B. ;)
The Sweet Stuff
I'd been cut off from society. I suppose to others, it could have seemed like I'd been wiped off the face of the earth. And so it meant a lot to me when people were thoughtful, remembering my existence.
I was with a few people one time, who were about to head off somewhere, and I was asked if I was OK in coming along. I suppose it wouldn't be easy for someone who hasn't had CFS to appreciate the difficulties of it, and that someone thought of me, rather than taking it for granted that I could relocate myself, was sweet.
I received a get well card from a friend of my grandfather, whom I'd never even met. (I'd met my grandfather, not his friend. ;))
To the thoughtful people who messaged me, visited me, prayed for me, joined me when I was alone outside church, or otherwise showed me that you cared, thank you so very much.