My (mostly) horizontal life. Chapter 1. Some things I have been doing this winter

Imaginary qigong

I stopped doing my real qigong practice about 2 months ago when I had another crash and couldn't stand upright for any sensible length of time, but I kept going outside, lying down on the ground and doing it in my imagination anyway. Some people say imaginary exercise is almost as good for you as real exercise. That may be hard to believe, but it does help me feel less stressed, and it is something to do. Now I'm wondering, is the reason I am still only able to do qigong in my imagination, because I'm still too sick, or because I can't actually move in the amount of clothes I need to wear to go outside now? (one jumper, two puffer jackets, 2 beanies, a neck warmer, thick fluffy pants and gloves!) Happy winter solstice Tasmania!

Hey look, it snowed, it really was cold! 

Not going to my friend's winter beach wedding

Yeah, nah, it just wasn't going to happen with the squiddly little bit of energy I've got for travelling and talking, and the problems I have when there is too much noise and activity around me. Booo : ( CFS/SEID is a NO-FUN disease. I drew a picture for them but... 

(After another friend visited the other day with her baby, and I decided what I needed was a grown-up pram. That thing looked pretty comfortable!)

Going to the doctors and getting tested for all the things

More doctors, more blood tests, a CT scan, a heart ultrasound. Just making sure that most of the potentially treatable diseases are ruled out, before settling for the untreatable diagnosis of CFS. I did get to see pictures of my own torso in cross section, and that was pretty cool. I felt like a specimen from first year zoology on a slide. Like a worm. And I saw an ultrasound of my heart doing its beating, pumping, valves opening and closing heart thing. It was still going strong, despite all. Go heart! 

House sitting

House sitting - where I mostly get to hang out with my often challenging friends 'lonely' and 'boring', but life is easier because I don't have to deal with anybody else's mess or noise. 

Not eating any fun foods, like ice cream, or cheese, or bread, or cheese and bread together in an oozy, delicious cheese toasty....

BOORING. But a lot of people on the internet report they feel better if they change their diet, and especially if they exclude gluten and dairy. I haven't had much luck figuring anything out yet, and there are approximately one million different diets you can try, or foods that may be causing a problem, so I guess I'll keep experimenting, and not eating cheese toasties just in case. 

(Hey, how about that time it snowed heaps, and we wagged uni and walked up to The Springs and warmed our hands up and made hot gooey cheese toasties on the public BBQs and drank tea, then boogie boarded all the way back down again? That was the funnest snow day ever! Sigh.... I miss fun.....)

But I'm still eating plenty of delicious things, so its not too sad. And look at those little mid-winter home-grown ripe tomatoes! Woo! 

Wishing I was a barnacle

I was lying on the floor in the lounge room when my house mate gave me a bit of sushi seaweed to eat. That's when I decided I should actually be a bottom dwelling algae munching sea creature. Probably the best cfs animal to be would be a barnacle. I could just wave my tentacles in the water to grab food floating by when I got hungry, then when I got tired or conditions out there got a bit rough, i could just close tight my hard, soundproof, waterproof shell and have a nice old barnacle nap. It'd be cool to hitch a ride on a whale too. Did you know that when barnacles are youngsters they swim about freely in the sea, and it's not until they grow up that they settle down, cement their head to a rock, grow a shell and convert their swimming legs into retractable food grabbing tentacles? Does that sound like any humans you know too? 

Here's me and a few kids pretending to be a barnacles when I worked as a Discovery Ranger / nature guide at Freycinet National Park a few years ago. 

Painting watercolour birds. (When I can be upright for long enough.)

Mainly parrots

Crocheting things with this beautiful wool that my friend Emily dyed with native Tasmanian plants

  

Yay bushcrafts! I made the arm warmers for Michelle, who sent me a gift of veggies from her organic market stall, which are in the fry pan picture. Thank you Michelle! Also, let me know if anyone wants a beanie or a pair of arm warmers. I like having people to make things for : ) 

And, watching clouds

The sky keeps moving and changing, even if I don't : )

The end, for now. 

"Exercise" for the floor-bound humans amongst us

Healthy human bodies are designed to move, and being intolerant to exertion when you have CFS/SEID is a major catch 22. 

Still, there may be a few things you can do to keep your muscles and joints from becoming completely deconditioned and seizing up over time. 

I drew some pictures of some floor based exercises and stretches that I do when I feel well enough. It's much easier for me on the floor, as like many other people with this condition, I have developed orthostatic intolerance, meaning my body does not cope well with being upright. 

These exercises pictured are gleaned from having attended yoga and pilates classes over the years. Please be advised that I have no formal training in either of these disciplines. If you  exprience any pain, please scale back the movement or stop. However even just 1-2cm of gentle movement, or doing the movement in your imagination can be beneficial. If you have CFS/SEID, you must go slow, be gentle, have lots of rests between the exercises. If you experience any symptoms (for example, my neck and armpit glands tighten and become sore when I've done too much), or post exertional malaise the next day, SCALE BACK. It can be useful to monitor your heart rate, to make sure you aren't going to hard. DO NOT push yourself. Also, engage your pelvic floor whilst doing the exercises to protect your back and build core strength. (imagine holding in a fart). More ideas can be found by looking for recumbent exercises for POTS (Postural Orthostatic Tachycardia Syndrome) on youtube. Its good to try gently using all your joints, at least once a day. 

I also intersperse the exercises with restorative yoga poses, or just do restorative yoga if I don't feel well enough for anything else. A bolster is handy. 

If you are reading this because you also have CFS/ME/SEID, good luck xx

A letter addressing GET and CBT - two debunked and potentially dangerous 'treatments' for CFS / SEID still recommended by doctors today

My GP recently referred me to an infectious diseases specialist,  to see if they could think of any more greeblies to test me for. So I organised a lift into town with my mum, lay on the floor in the waiting room, recounted my entire life, health and travel history, went back to the pathology lab, gave more blood and also had a CT scan of my internal organs. Turns out, like most other chronic fatigue patients, besides an ongoing immune response to the Epstein Barr virus, there isn't anything detectably wrong with me. (Developing a simple test for CFS/SEID is still in the research stage, but there has been some promising recent progress in this field from both America and Australia. Much to the relief of many patients, it has officially been confirmed by science that there is definitely something wrong with us! http://www.medscape.com/viewarticle/871552).

The specialist wasn't a CFS specialist (there are very few of those in the entire world, let alone Tasmania), so once she'd ruled out several more infectious diseases, she downloaded a report from one of the most commonly used journals available to doctors, with the latest in CFS diagnosis and treatment.

Unfortunately, the top two 'treatments' recommended in this article were Cognitive Behavioural Therapy and Graded Exercise Therapy, which refer to a now debunked 2011 study. The publication of this study in major journal has caused much pain and suffering for patients, and its very unfortunate that this has not yet been updated in the literature available to doctors in Australia. Because I did not have the energy or mental clarity to argue this point in person, I have written this letter to have on hand to give to any doctors who recommend CBT or GET to me, with the aim of counteracting the misinformation.

If any of you out there reading this are also encountering doctors who are prescribing CFS or GET, feel free to modify and use this letter for your purposes, it's open source.

Concerns about CBT and GET recommendations in Up to date report: Clinical Features and diagnosis of chronic fatigue syndrome / systemic exertional intolerance disorder

I am writing this response because I am concerned that the top two treatments for CFS/SEID recommended in this report are Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). The reference is to a controversial 2011 study, which has now been revealed to have used a deeply flawed scientific method (1,2, 3, 4). It is the opinion of many CFS patients and doctors that these recommendations are potentially harmful, and they are connected to the now outdated misconception that CFS is a psychological disorder.

I agree that CBT may be useful for some patients in learning to manage the disease. Psychological management skills can be very important when finding oneself suddenly living with a debilitating chronic illness, however it is in no way a curative treatment, as the report suggests.

GET, on the other hand, has been very harmful for many patients, causing major relapses in their condition. I agree that when in recovery from a serious illness or injury, a graded exercise program is important. However if a patient had a broken leg, for example, therapists would make sure that the damage to bone was healed before any walking was allowed. However, for many CFS/SEID patients who have been forced to undergo GET, the underlying disorder has not been resolved, and the exercise has exacerbated and prolonged their illness, just as walking on a broken leg would do.

One of the main, defining symptoms of CFS is post exertional malaise (PEM). Basically, this is an inability to repeat previous exertion. It has been demonstrated through exercise trials on consecutive days, and can clearly differentiate CFS patients from healthy controls, and sufferers of other diseases such as MS (5, 6, 7). PEM can last for days to weeks after the exertion, manifesting in worsening fatigue, flu-like symptoms, cognitive dysfunction, sleep disorders, pain and orthostatic intolerance, among others. The exertion needed to trigger PEM varies between patients, and at different times of the one patients' illness, and can be as little as showering, talking for ten minutes, or walking to the toilet. The onset of PEM can be delayed 24-72 hours, meaning it is not immediately obvious to the patient when they have exceeded their safe energy envelope. (Anecdotally, many patients are finding pacing with a heart rate monitor a good way to limit their activity to within safe levels (8))

Therefore, I believe that any psychological or exercise therapy must be undertaken by CFS/SEID literate practitioners, familiar with the unique challenges of this disease, and it must not be assumed that these treatments are curative. It would be good if references to the flawed 2011 trial were removed from the literature available to doctors in Australia.

I understand that research into the underlying disorder that causes CFS/SEID is continuing, and hopefully a real cure for this real physiological disease is on the horizon. In the meantime, it should also be noted that many CFS sufferers, desperate to gain back some health and functionality, may be interested in trying more experimental treatments The disease can be so debilitating, and recovery rates so low, that patients may deem unconventional treatments to be worth the risk, if the practitioner is willing.

In the mean time, I believe that several more appropriate resources for clinicians treating CFS are:

• “Chronic Fatigue Syndrome Myalgic Encephalomyelitis, Primer for Clinical Practitioners” by the International Association for CFS/ME

• Beyond ME/CFS: Redefining an Illness: Report Guide for Clinicians. By the Institute of Medicine of the National Academics.

• Dr Charles Lapp: An Overview of ME/CFS Diagnosis and Management: https://www.youtube.com/watch?v=RTzfWs6Fhl4

References

1. How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890

2. Bad science misled millions with chronic fatigue syndrome. https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
3. Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment http://journals.sagepub.com/doi/full/10.1177/1359105317707216
4. Do graded activity therapies cause harm in chronic fatigue syndrome?http://journals.sagepub.com/doi/full/10.1177/1359105317697323
5.  Post-exertional malaise. http://me-pedia.org/wiki/Post-exertional_malaise
6. Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity. http://phoenixrising.me/archives/17902
7. Postexertional malaise in women with chronic fatigue syndrome. https://www.ncbi.nlm.nih.gov/pubmed/20095909
8. Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope. http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope

I miss being tired!

Post card from sick-town

Dear friends, 

there is a feeling that I have now realised you should really appreciate, if you have it. And that is being tired!  

Yeah, but I've got chronic fatigue syndrome, so I'm tired all the time, right? 

Yeah, I am really tired all the time, but I'm sick tired, stressed tired, wobbling on the edge of the scary abyss tired. I'm sure we all know this feeling, from times of being sick or over-stressed. Its quite different to healthy tired. That good, sweet, delicious tired, like when you've gone for a massive swim in the ocean and you get out and into your warm dry clothes, wrap your hands around a steaming mug of tea, and drive home with the heater blasting in the car to a big hungry lunch and then an afternoon nap in the sunshine. 

Or you've been bushwalking for a week and you get home and watch all the muck run off your legs in the shower and have a little wimper because all the scratches sting and the bruises hurt, and you dump all your stinky wet gear in a pile outside to deal with tomorrow, and tuck into eating a meal of fresh vegetables and summer-fruit and ice cream, and sleep like a baby in your soft, warm bed, then wake up the next morning a bit sore and limpy, but also fit and refreshed to your core. 

Or when you've just organised a big event with heaps of people, spent all day running up and down a hall, serving food and washing dishes, dealing with minor emergencies, and you've just packed up the last bit of equipment with the last remaining volunteer, and you don't want to speak to anyone else or think at all any more, but it was heart-warming and satisfying, and you'd do it all again the next year. 

In retrospect, I probably used to spend most of my life chasing that lovely, sweet, exhausted tired feeling. That having-lived-life-to-its-fullest tired. 

But CFS makes you sick, fluey tired, with a side serve of bodily-anxiety. I'm not anxious in my mind, but my body if often very stressed, just from standing upright, or needing the find the mental-energy to follow a conversation when there are other noises going on. And despite the exhaustion, I often can't even sleep properly at night, just because a lot of the systems in my body are whacked, including the hormones that regulate sleep cycles. 

This is one of the main reasons many people with CFS really hate the term CFS. Too often the response from others is 'yeah, I get really tired too'. When we're not just chronically tired, we're chronically sick. A new, and I'd say much more appropriate name for this illness is Systemic Exertional Intolerance Disorder (SEID), which I will try to begin to use instead of CFS. 

In conclusion, a reminder that next time you feel healthy, good tired - please appreciate the delicious sweetness of that feeling xxx 

Having a rest on a clump of buttongrass, on the rather muddy track leading to the Western Arthurs, 2011. Yeah, I was tired. But I also got up again, walked another four hours through the mud and rain, drove three hours back home whilst sitting upright and talking to my companions at the same time, showered, ate and went to bed and slept like a log. With CFS I've had a good day if I can achieve the showering and eating bit! 

Balance and bandaids

“Hello, I'm here to see the heart specialist, and....ah I feel a bit dizzy....ah, umm.....I'll just squat down here for a bit”.

Walking in to the reception desk from the drop-off zone outside the hospital had been a bit much for me.

As the receptionist hurried to offer me a glass of water and a seat, I tried to explain that squatting on the floor was actually a lot better for me than sitting on a seat. It's true. My heart rate monitor shows at least ten beats per minute less when squatting as compared to sitting. Fortunately, the doctor appeared, and let me into the examination room early, where I could lie down. He carried my bag and helped me take off my shoes. He was a nice doctor. 

After recovering, and recounting my history and symptoms, I stood up again, and the doctor measured the changes in my heart rate and blood pressure. The former rose, and the latter fell, even though I did not move. We continued to chat, until at five minutes, my body hit the wall, as it had done when I reached the reception desk. “Ah, I'm starting to feel a bit uncomfortable now”, I said abruptly interrupting the conversation.

I lay down again, but from the five minutes of data, in which my heart rate had reached 110 beats per minute, the doctor could diagnose me with a pretty clear case of Orthostatic Intolerance, or what I usually call my "being-upright problem”. It is a common symptom of chronic fatigue syndrome, and possibly the most disabling. The diagnosis of OI is useful, as it is a recognised condition on its own, and this may help my case with centrelink. It is also treatable.

I left with a prescription for a drug, a hormone that will increase the amount of salt retained by my kidneys, and therefore increase my blood volume and hopefully allow me to stand upright for longer without my heart racing, my stress-response kicking in, and me feeling sick, anxious and woozy. The doctor was very optimistic it would help, and also that I would probably get better from CFS.

I left feeling scared, hopeful and knowing I needed to brace for disappointment all at the same time.

I'm scared of the drug, and the long list of unlikely, but possible side-effects. There's no doubt that even if it helped just a little bit, it would greatly improve my quality of life. But the stubborn hippy in me really wants to eat clean, pace and meditate myself better instead. I want to get better from the core, the root cause of this disease, not just take a drug that ameliorates the symptoms. In theory I'm totally against the pharmaceutical band-aid solutions that our world is biased towards. I'm scared of masking my symptoms, and making the underlying problem worse by messing around with weird drugs and synthetic hormones, especially when no one really knows what is wrong with my body in the first place.

But in reality it's been over 14 months of gradually getting worse despite all my best efforts of the above, and I am also scared of how much worse it could get. Underneath the mountains of deep-green organic kale that's passed through my digestive tract, and the hours of self-healing visualisation audio-meditations I've listened to on youtube (hey I've gotta fill my long, brain-fogged horizontal hours somehow), and in the complete absence of gluten, dairy, sugar and fun from my life, I'm still not winning. So I decided it was time to take a slice of humble pie and seek more advice from modern medicine. 

I am aware how remarkable modern medicine is and how many lives it saves. I'm aware of its patchy track record and the many tragic mistakes it has made along the way. I'm aware of the placebo effect. I'm aware of the nocebo effect. I'm aware of the exhaustion and despair of many cfs patients who have spent too much precious energy, money and hope on visiting specialists and trying treatments that help only a tiny bit, for a short time, or not at all, or that have ultimately been harmful. I'm aware that sometimes, some treatments do work well for a small subset of patients, even if they do nothing for the majority. And I'm also aware of the incredible utility of band-aids, both in preventing further physical damage and in preventing pain and psychological stress, which are harmful in themselves. I would not decline painkillers in the interim between developing a toothache and seeing the dentist. In fact I would love the absolute shit out of those painkillers. 

I am going to try the drugs. 

After the appointment, the flame of hope which was fanned by the optimism of the doctor, battled with the rationality of knowing I also needed to brace for disappointment. I want my life back, but I've been on the hope - disappointment roller-coaster for too long now. However the fantasies of getting better still bubbled up. In fact, they bubbled up and grew so much, that they hit a place where I suddenly became scared of getting better. If I get better, I'll have to start work again, and what will i do with my life? I probably couldn't be a track ranger, a bushwalking guide or a teacher any more, as those professions take far too much energy. My world has become so small over the past year, and my days so simple (sleeping in, reading, crocheting, preparing food, recovering from eating), that the prospect of living a big, busy life again seems hugely daunting. Then my rational brain kicked in, and told me to stop being stupid.

"If, and only if, you do get a bit better, what will you do Jen?"

"Well, let me think...... I might do my own laundry. I might not lie on the floor in the doctors waiting room. I might talk to my friends have fun and laugh more. I might go to the shops and buy my own food. I might go to the beach. I might even go swimming or ride my bike again one day, or....and...and....and... "

Of course the idea of working is overwhelming from the perspective of someone who can't stand even up for five minutes.

One day at time Jen, one day at a time.

For now, I continue the arduous task of finding the right balance between hope and disappointment, humility and stubborn belief, and between trusting and being appropriately sceptical of those who have far more medical knowledge than I, yet operate in a world that does not yet understand the root cause of CFS/ME.

I'm still here

This is a short post to document that I'm still here. Still alive, still breathing. Just not quite winning yet. Here's a graph of my number of steps per day in 2017.

This is numerical proof from my wrist-band pedometer that my fatigue and other symptoms got worse around the end of April, for no clear reason that I've deduced. So I've been stuck horizontal a lot more, and the only exercise I've been achieving is imaginary qi gong (imaginary yoga is still a bit hard, and I can't even imagine having the energy to do imaginary star-jumps). I also haven't had the mental power and clarity to convert my thoughts, feelings and scrawled notes into something I feel okay about publishing on the internet. To be honest, one of the main reasons I write this blog is because I am very socially isolated by this disease, and I want to call out to the world that "I am still here!". Any 'raising of awareness' about CFS that I can achieve is really a side-benefit. But I also don't want this blog to be just more boring ramblings of a sick, desperate, lonely person. There's enough of that online already.

Even though I haven't really written or drawn anything I deem worth publishing, I still have a lot to say. Ideas swirl around in my head. Themes around the topic of being physically, mentally and socially straight-jacketed, by a completely unexpected and disabling illness in my early 30s. One that, despite my best efforts at pacing, doesn't appear to be going anywhere soon.

Hopefully one day soon I'll be able to write something again. It's on my to do list every day, along with 'get out of bed', 'have lunch', 'wash up' and 'rest rest rest rest rest'. I have more than a dozen story ideas.

In the meantime, here are two cartoons that demonstrates the rapid variability of this illness. How people with ME/CFS can occasionally look and act okay, and then can completely and rapidly wilt into an puddle of swollen, aching glands and brain fog on the floor, usually when the person we are talking to has left, and we no longer feel the need to hold ourselves together.

(Source unknown, sorry)

I don't know how to copy and paste those little moving gif pictures, but here is a link the second one (just scroll down the page a bit).

CLICK TO SEE ANIMATION

And, here is my interpretation of the above experience, which comes from the fact that one of the most frustrating things about having such craphouse batteries, is not that I can't do my favourite happy-making things, like go bodysurfing, climb mountains or hang out with friends, its that I can't clean. Its sooooo frustrating. And imaginary cleaning just doesn't quite cut the mustard.

If only I could visit my past self, standing at the sink, grumpily banging around pots and pans, and say "Young Jen, you can stand up long enough to do the dishes. You have so much to be grateful for!"

Oh well. 

Next time Gadget, next time.