Six minor, but very stupid annoying things about ME/CFS

The worst things about CFS is how much time we spend feeing sick, miserable and in pain. The worst thing about CFS is the sharp ache of missing our past, healthy, energetic lives, or the imagined healthy lives we never had. The worst thing about CFS is how vulnerable it makes us to abuse, poverty, natural disaster, stress, and anything that disrupts our rigid sleep, rest and feeding schedule. The worst thing about CFS is not being taken seriously by some doctors, and never knowing what caused our mystery illness….

There’s quite a few worst things about CFS that are definitely complaint-worthy, but there’s also lots of little things that feel comparatively petty, but niggle anyway. Sometimes it helps just to have a good old whinge about them! Here’s a few: 

1. Getting fat and stupid diets
Some people can lose dangerous amounts of weight with their version of CFS, but with complete lack of exercise ability, my body tends towards weight gain. I have been watching my diet for the first time in my life, so I haven’t yet become actually obese, but have definitely gained a few kilos of extra pudge. Besides arguably shallow, irrelevant, yet still powerfully present aesthetic concerns, it's just UNCOMFORTABLE. Getting more chub rub (despite zero exercise), having bigger boobs, not fitting into some of my clothes anymore and having more squishy bits getting in the way when I’m trying to do certain twisty moves in yoga is UNCOMFORTABLE! Seeing myself in the mirror can trigger various shame and toxic thought spirals, which I then get annoyed at myself for caring about, as I am being influenced by the unethical and COMPLETELY STUPID beauty industry that aims to keep women constantly miserable, self loathing, and spending money on trying to “fix” themselves. But I know if my incremental weight gain continues, I could become an unhealthy weight with a plethora of brand new, associated, unenjoyable health concerns. And diets are WAY less fun than exercise. In fact, they are most often completely boring and stupid and make me grumpy and I DONT LIKE THEM AT ALL. Ugh. I have developed fairly sustainable healthy eating habits, which involve intermittent fasting for about 16 hours a day, and an 8 hour eating period, plus I eat fairly low carb and mostly paleo food which keeps me satisfied for longer. I eat mostly vegetables, small amounts of wallaby meat, healthy fats like olive oil, and maybe too much dark chocolate and nuts. I ALREADY EAT HEALTHY! I ALREADY RESTRICT MY DIET! However, I still continue to gain weight, so I probably need to do something more. But what? When I tried longer fasts, or the 5:2 diet, I got very cranky and cracked and ate lots of bread and cake. SIGH :( Boring! 

Additionally, I am always meaning to try various gut-healing diets like the auto-immune paleo diet and the GAPS diet, in case they help my general health. But I have been chronically procrastinating about doing these because, like all diets,  they are BORING and HARD and bone broth and organ meats are rather unappealing. Diets take a lot of willpower, which is a limited resource, especially when it comes to delicious dairy products. Ugh. Boo.  (But AT LEAST no doctors yet have assumed that the reason for my health problems is being overweight, rather than the other way around.) 2. Being a party pooper / the fun police  

When I was really sick and intolerant to sounds, I was often needing to ask my housemates to turn their music down, and constantly feeling guilty about being the fun police, which was really wearing. It was really hard and I know it annoyed them too and they’d have preferred not to live with a sick person, even if they were mostly good about it. So I felt sick AND guilty about something I had no control over.  (I have since tried to only invite housemates who prefer the quiet life themselves, so things have improved for now.) 3. Less tolerance for other small things going wrong, and being fearful that small things won’t heal 

CFS is one giant thing that’s wrong with my body, and I spend much of my quota of tolerance and acceptance being okay with that. But if a new thing goes wrong with my body (or in my world), especially if it is ANOTHER unexplained thing, like a random pinched nerve or a weird itchy sore, I’m more likely to be upset and catastrophize that it's never going to get better. I’m not as confident in my body’s healing capacity as before, as that confidence was cracked by getting sick four years ago and not getting better. (Mostly, however, the small things do get better. My papercuts DO heal! Well done body) 4. Stupid health books 

Stupid health books that all say contradictory things. So many of them. Piles of them.  So many quacks, writing books, trying to sell online courses and expensive supplements and $700 skype consults and courses.  And they sometimes say things that I think are pretty stupid and definitely unfun, like try drinking 2 litres of celery juice a day and doing coffee enemas. And even though I think they’re stupid, I feel guilty for not trying them, because it means I haven’t tried everything. Ugh. Stuuuuupid!  5. Sunny days being the worst.  

Perfectly beautiful weather days and happy events like weddings can make me sad. Sad about missing out. (I am getting better at not getting too upset though. My life is ok). 

6. Looking healthy

I guess if it came down to it, I would choose looking healthy over looking rat-shit-sick, but it’s just weird that when I am really seriously disabled, I look perfectly healthy. I feel awkward when using disabled car parks, when meeting people who don’t know my story, or when walking along the footpath slower than an old lady. I feel insecure that people might think I’m a hypochondriac, mentally unwell, lazy or a faker. Instead of explaining myself, I often pretend to be normal for a short period of time, and then pay for it later. Or I make up lies about recovering from an injury. I have a car sticker that says “not all disabilities are visible”. I wish I had a little sign above my head that said that too. A minor thing, but a constant, 

Anyhow, bla bla, thanks for listening to my whinges. Sometimes whinging gives temporary relief. Letting all the frustration out. Ughrghghghghfhhghghughh! CFS IS A STUPID ANNOYING THING!!!! So annoying that I don’t even have any funny illustrations for this post. Maybe I’ll work on them later. 

Thanks all. Time for another nap!  

On sitting

I used to be a walker. Walking, striding, hiking, climbing, ambling, meandering, strolling, bush-bashing. The ancient art of propelling oneself forwards with balance, legs, breath and heart. Streets, bush, beach, uphill, down, nearby and remote, off track and on. It was an integral part of being me. For work, joy, health, commute, fun, exploration, stress-relief and a simple bodily necessity. Moving my body, circulating my blood, aerating my lungs. Feeling alive, feeling free, and in touch with the wild nature of my body and the world beneath my feet.

But I can’t do that anymore. An invisible, mysterious, chronic illness landed upon me nearly four years ago, and has curtailed my energy budget to a one-figured percentage of my previous allowance. So now, in its place, I am a sitter. Meditation, you may call it. At least, attempted.

I’m not as good at sitting as I was at walking. I always wanted to walk, was compelled to, was whining and biting at my leash in caged frustration when kept inside for a day. I never had to force myself to go for walks, as I do with my daily sitting, for which I must exercise strict self-discipline.

I’m much better at sitting outside, where I can attempt to balance my attention on the sounds of nature, birds, waves and wind, and the feel of fresh air blowing across my face. But unlike walking, which is an entirely normal thing to do in public, sitting can be weird. It is a private practice, and people often apologize when they pass by for disturbing me. I try to find nooks and crannies out of the way, although it’s sometimes not easy due to my limited mobility. I wear sunglasses and a broad brimmed hat to hide my closed eyes. I am a stealth meditator. I don’t position my hands in any stereotypical meditation mudras, as I’d feel too embarrassed, like a “spiritual wannabe” or mindless follower of those leading the “mindfulness” trend on the internet: toned, white, young, “#blessed” yoga ladies. Sitting outdoors can be cold, so I take plenty of jumpers with me, and my foam sleeping mat. Strangers sometimes ask if I’m going camping, which I think is a funny question, because my bag is just a daypack, and I’m usually somewhere relatively suburban. “No, it’s just for sitting on”, I say. Sitting! How strange that sitting is such a odd thing to do nowadays, at least when it’s not in front of a screen.

Half an hour a day is my rule. I can take forever to get settled, I get terrible pins and needles and I check the timer constantly. But if I go a day without I miss it. My body and mind are more tightly knotted and misaligned. After I sit for a while, with a meditative intention, my shoulders drop and my jaw tension loosens. I pay intermittent attention to my breath - the windy, rhythmic coolness in my nostrils, and my belly and lungs expanding. I feel pleasure in the breeze against closed eyelids and the break from staring at text. It gives a chance for my thoughts to slowly settle, like silt in the water column, and allows a feeling of spaciousness rather than constriction and imprisonment. I can feel a bit more alive, even without the vigor of exercise. Pausing to be properly still in our beautiful world I notice it more deeply and wondrously. I can become enveloped in the sound of the wind in the trees or the waves breaking on the shore, notice the texture of rock under my feet, the patterns of light on water, and the grace of common gulls, wheeling on high air currents. Loneliness can dissipate. I can let go of comparisons, frustrations and sadnesses, even if just for small moments. Sometimes I discover myself in a moment of peace and uplift and I’m inspired and think “I’m going to do this twice a day” or “I’ll sign up for one of those ten day meditation courses!”. But the next moment the discomfort returns, and I think “ten days of sitting, for ten hours a day! Ugh, no thanks!” 

 

So I’m very imperfect at it, I procrastinate doing it every day, and I am much more likely to be sitting there thinking “I can’t feel my right foot anymore, how long has it been?” than zenned out and receiving insights from my Higher Self. My most ardent personal desire is still to be able to use my body freely again, like I used to. But for now, sitting is my daily link to sanity and peace, and the main practice that helps me cope with life in the invisible  prison. I am grateful for this opportunity to practice. I am grateful that I can currently practice, as for a while I was so sick that I couldn’t sit upright for very long, let alone drive a car to take myself to nearby outdoor places. And I’m grateful for living in this small city, where some accessible, beautiful, semi-wild sit-spots still exist. 

Going to Mount Field with CFS

It’s my fourth year of chronic fatigue syndrome. Before I was sick I was an avid outdoors person, bushwalker , guide and ranger in the Tasmanian mountains. I loved climbing hills, feeling alive, swimming in lakes. They were my second home. I didn’t know if I’d ever be able to go back. But this April, I did. This is how it went down. 

I start packing my warm clothes, food and sleeping bag several days before. Got to pace it out. I have a miserable crash day two days before and wonder if it’s sensible to go, but it seems to only be a 24hour crash, the heavy weight on my glands is gone the next day. 

Shelley and Damien pick me up late on Thursday morning, and Damien carries all my stuff to the car. 

There’s a lot of talking on the way, and even though this doesn’t raise my heart rate into the danger zone, it still means I’m pretty tired when we get there at about 1pm. 

I’m very excited to see some old plant friends in the drive up. Mixed wet forest and rainforest species like sassafrass, celery top, myrtle, yellow gums, pink flowering prionotes, and further up, mountain top species like twisty curly leafed pandani heaths, white snowberries and beautiful orange autumnal fagus! Hello!!! I didn’t know if I’d ever see you again my tassie mountain plant friends! 

It’s freezing cold and windy up in the alpine zone. The fire is still going from the previous people when we get to the hut, which is lovely. Parking is right next to the hut, but I’m a bit dismayed we’ve got the one with the longest walk to the toilet block. Those steps add up to my daily energy and expenditure quota. I retire to my bunk. I’m a bit wired and I know I’ve overdone it, so I calm myself down with some imaginary Qi gong and nap and read for the rest of the arvo. I get to lie in my warm sleeping bag listening to the wind howling outside, the fire crackling inside and Shelley singing with her guitar. My body feels a bit achey, especially in my glands, but its nice. I’m at mt field! The air is wilder and fresher. I perk up a bit later for dinner and a game of bananagrams around the table. 

I feel okay the next day, probably due to preventative napping the day before. Woooo, we look out the little windows and it has snowed overnight! I pull on my boots and go for a slow, short wander up the fresh, snowy road, where only pademelons have left tracks before me, the snow sticky and squeaky under my feet, and clinging all over the intertwining branches in the thick subalpine forest. I suck on a few mouthfuls of snow that I munch right off the leaves. Occasionally a sunbeam breaks through clouds and momentarily lights up the valley. Little birds flit across the road between snowy bushes. How do they survive? I’d like to keep going to lake Dobson, but I turn around after a couple of hundred meters, not wanting to overdo things, trying to appreciate the slow chance to walk meditatively, soak it all in. Sometimes I can get in the zone, other times not, and slow is just frustrating. I must admit it’s harder when the weather is so blustery and cold. 

Hanging in the hut, crocheting, talking, eating, reading with Nico and Shelley. Diet is out the window this couple of days. Meh, I don’t even know if it helps. Corn crackers and cheese, bring it on. Damien goes for an energetic walk for a few hours through fresh snow almost up to the tarn shelf and comes back stripping off layers, alive and wind blown , hungry and happy. It’s nice that I can picture these adventures in my mind as I’ve been up to tarn shelf so many times before I was chronically fatigued. 

It blows a ripping gale and snows all day. Every now and then I look out the window and feel excited to see snow and buttongrass and snowgums. Woooo! It gets too hot in the small hut with the fire, so we have to open the window. Going to the loo is a chore, having to put shoes and coat on, tromp through snow and have your pants down while cold wind whistles up your bum from the chute of the compost loo. 

In the afternoon we go for a short drive and wander at lake Fenton in the fagus and snowgums. It’s SO pretty and cold and the crazy wind whips the lake water into spray. I turn around and head back to the car before the others. I’m rugged up, but not enough for going at my careful, unvigorous pace. They also go for a wander at the fagus grove just down the road, but Shelley and I stay in the car and watch the wind tearing down the bouldery valley, bearing the rain and snow in huge horizontal sheets. Back to the hut, to hang in bed and recover from the exertion before dinner cooked by Shelley and another round of bananagrams by the fire. 

Nico drives me home the next day. I let the others do the major work of packing and cleaning up. We have a brief stop at lake Dobson so I can walk to the first pencil pine to say hello, and also the super -glorious deciduous beech grove by the road. Slowly walking up the short incline over the boulders with snow, moss and lichen. Crouch down, trying to breath it all in. Slowly back down. Snow is melting and sloppy. Occasional sun showers in the green ferny forest on the way back down. Glistening towering yellow gums. Twisted grey, pink and white snowgums. SOO SOOO pretty. I’d like to walk to russel falls through the tall wet eucalyptus forest too, but i reckon it’d be too much. 

All the way home. Nico brings my stuff in. I go to bed. That was nice. I feel a bit more alive and fresh, even though I couldn’t exercise. I’m happy I could do that, and was supported to do so by three generous humans. Now to slowly pace the unpacking. 

Radio interview

https://www.abc.net.au/radio/hobart/programs/statewideweekends/air:-medical-matters-may-12/9754390?fbclid=IwAR0DHDo-zKHumi8oswiMATd_tg8dyvxjrJLv3P4KQVZAANsPNLweQHKRSzQ

11.38 minute interview with myself and Juliette on local abc for the international day of awareness for ME/CFS, 2018.

2018

I had a good year. 

I’m still very much chronically fatigued, slow and exercise intolerant. To stay in my safe zone, I need to keep my heart rate below 110, which I reach pretty easily due to my higher-than-normal standing heart rate. My little beeping heart monitor is my leash. But my activity range expanded this year, and my trajectory is currently very pleasing. This year I was able to do 2400 steps per day on average, compared to about 1700 last year. Here is my good-looking graph. 

My daily step count (weekly average) is a very good representation of how well I feel, because I always potter around more when I can, and go for slow walks, verses schlomping on the couch, or conking out having long naps that I wake up from feeling gross and groggy. 1700 is about my miserable line. Above that I feel ok, can be cheerful, content, happy. Below that life is a lot harder, I feel sick and despondent, fed up, frustrated, incompetent and scared. A “good attitude” can only take you so far when you feel like you’ve had the flu for six months on end. 

This year I also began to be able to do some gentle floor-based yoga and real life qigong (and I still do a lot of imaginary qigong to try calm down my easily-wired nervous system).. I really, really like being able to move my body. It’s a marvelous thing. Plus I regained the ability to take myself on short drives (under ten minutes) to beautiful nearby places like the waterworks, and do small shopping trips in south Hobart, socialize more, play piano and be less grumpy and noise intolerant. I was so wobbly when I first went to the salad bowl that I had to sit on the floor at the checkout, and go straight to bed when I got home, rather than carry my groceries in. But I don’t need to do that anymore. I’m very lucky. I still got a lot of help from my mum and others, with laundry, more strenuous cleaning tasks and shopping. This enables me to use my energy on other, more enjoyable things, and not make myself sick from overexerting myself vacuuming. I'm very grateful. I’ve been able to do most of my own cooking. I don’t need to sit down in the shower at the moment. And I was even recently able to take out the wheelie bins. Watch out world! 

Being a bit more physically independent has taken away some of the mental and emotional burden of having to organize a network of other people to do essential things for me like buying groceries, or communicate my limitations to everyone, such as apologizing to random tradies why I can’t go down the stairs to look at the hot water cylinder, or receptionists at the doctors that I’m happier lying on the floor than sitting on a chair. That was quite exhausting.

I attribute my improvement both to extreme heart-rate monitor pacing, and to the low-dose, off-label use of a drug called naltrexone, which I researched myself and asked my integrative doctor for a prescription for in March. It’s used in normal doses for drug addiction, as it blocks endorphin receptors so addicts don’t get high. But at about 1/25th of a dose it can do something to your immune system (“modulate”, whatever that means), and has been known to help some people with autoimmune conditions. I'm very lucky to be one of the ones it helps. It gives weight to the idea that CFS is, at least in some cases, or in part, an autoimmune disease. But nobody knows that yet. For the first six months it gave me hectic, stressful nightmares, but then I accidentally increased the dose by 0.5ml, and they counter-intuitively calmed down, phewph! I also feel it has caused my body to be a bit more forgiving when I accidentally overdo things, so I’m living less on a knife edge. Although I still have to be extremely cautious in my energy expenditure, there’s a bit more leeway. And I know my sick body better now, and can notice more subtle signals that I've done too much. Being slow, gentle, and always mistrustful of my body is my new normal. However  I’ve mostly slept well this year, and I live mostly without pain. Again, I’m a very lucky sick person.

The previous couple of years my share house was quite unsettled with heaps of people coming and going, but this year I’ve had 4 very excellent, generous, funny, caring, stable housemates and it’s been really wonderful. It’s been a nice house to be sick in, with winter sun and a wild, alive garden and our beautiful old mountain right there, under the sky. Friends attended another working bee to help keep the garden under control.  Again, I’m a super lucky sick person, to have a home at all, let alone such a nice one, in a time of housing shortages and rising homelessness in our city. I was also successful in appealing for the disability pension about six months ago, so I’m way less financially stressed than when I was on newstart. Again I feel so fortunate and relieved, as it’s really hard to get, especially with this invisible, poorly understood illness. 

I also think the longer the time since I’ve been able to do the things that previously brought me most joy, like bike riding and body surfing, the less painfully I miss them. I’d still not hesitate to regain those abilities, and to spend my summer time frolicking in scoparia and waratah-clad hills, and camping away from screens for days on end (I spend too much time on a screen). But I’m able to be pretty content, grateful and in-wonder, just sitting or lying in the one spot for hours at the waterworks, or in the bush out the back of my house. The world is immeasurably beautiful. And the changing seasons keep bringing new, very delightful things.

My housemates took me camping to Fortescue Bay in August, and did all the things for me like carrying the stuff and setting up the tent and cooking. Unfortunately it was still too much for my body and I crashed out really badly for more than a month after. Hence the miserable, lonely, crushed-hopes August, visible on my graph. It wasn’t worth it. But, lovely people brought me soup and children’s books again and I survived.

This year, as even more of my friends had new babies, I did some coming to peace with the likelihood I’ll never have biological kids, which is a thing that happens to many women, not always by choice, and for many different reasons. I’m less worried about being single than I was before I got sick. Sometimes I’m lonely, but more often I really enjoy no-people time. I’ve been pining for a dog to keep me company, and over the last week been practicing looking after a 16 year old pup. Although she’s very gentle and sweet and slow, the walking and pooing and weeing and cleaning up accidents is probably still a bit much for me on my own. 

In summary I am a very lucky lucky lucky fortunate fortunate fortunate broken record, and it’s been a good year, despite loss, despite an uncertain future, despite the third year of a life-changing chronic illness. I’ve got a bit better, I’ve had great people around me and I got to see waratahs in December on the mountain. Chronic illness has given me more gratitude I think. I try not to think about things that could overwhelm my capacity in the future, or my vulnerability to life not going smoothly. Just one thing at a time. I guess, a further insight that ‘hope’ is not about desperately hoping that unwanted things won’t happen to you, because that’s uncontrollable, but gently hoping that you’ll be okay, even if they do, and that life will have beautiful bits anyway. 2018 has been like that.

Thank you all xxx