Monday, 18 September 2017

Basket case

So this happens quite a lot.



It's not that I don't want to talk to people. It's just that when I stand up for more than a few minutes, I don't get enough blood to my brain and I can't focus on complicated things like words and language. Its a common symptom of CFS, called POTs (postural orthostatic tachycardia) or OI (orthostatic intolerance). I call it 'my being upright problem'. Its severity fluctuates with my other symptoms, but its generally been pretty bad for the past five months. I spend most of my time lying down, apart from when performing the essential upright tasks of daily living.

Feeling awkward about needing to act 'unusual' in public is a thing that many disabled people must come to terms with. Doctor surgeries or the welfare office (the only places I go outside the house) have been awkward for me, as I'm not even very good at sitting on a chair when my feet are all the way down on the ground. I prefer to sit or squat on the floor so my feet are a shorter distance vertically from my head. That's if I don't need to lie down.

I'm pretty sure the staff at the welfare office wondered if I was a basket case when I last had to go there. That day I was really sick, but there was no way out of that appointment if I wanted to keep my payments. I collapsed on the floor soon after walking in, and handed the attendant a note I'd written beforehand, explaining I was really sick, sensitive to noise and needed to lie down. But my body was malfunctioning worse than I had expected and I couldn't answer any of their questions. The three staff members who gathered around me didn't seem to know what to do, until my mum came in from parking the car.

Earlier in the year I had three separate dog walkers approach and ask if I was okay when I had to lie down on the grass in the middle of a park. My body couldn't make it the hundred meters to the beach that day. Of course it was an encouraging sign of community and human nature that they did so, but I really didn't have the energy to explain myself. And what does one say anyway? Yes but no, no but yes? I wished I had a little sign or note to show people. Maybe they thought I was drunk, drugged or mentally ill? "I'm not okay, I'm seriously sick, thanks for asking but there's nothing you can do. I might look terrible but I'm actually happy to be out of my house and close to the water for once. I just need to lie down".

Do other disabled people stay at home because they worry about what people think of them? I must admit at the time my largest worry was how I was gong to get back to the car, not what people thought of me. I wondered how many times I had made assumptions or been scared of unwell people acting strangely in public before? I know I will be more open minded and check my fear reaction in the future.

Because POTs is the most disabling of my symptoms, I've started taking medication that stops my kidneys excreting so much salt and therefore raises my blood volume. It might be helping. But not so much that I can say for sure. 

The inability to concentrate also occurs when there's other distractions, such as lawn mowers, music, other people talking nearby or strong chemical smells. 

Compared to a normal functioning human-being I am a bit of a basket case really. Or you could say I'm a crocheted beanie case. (I must have made at least a hundred over the past year). 

"When a given situation has no solution. It makes reference to someone who has lost their health and has no cure. It is said that people without cure to a mental disease used to be sent to a mental health care facility for life where they would manufacture baskets for the rest of their lives. " (the Urban Dictionary)

At least, despite my sometimes unusual appearance and actions, nobody has institutionalised me, and I still do have my mental health. I'm still okay. But I don't take it for granted anymore, like I used to take my physical health for granted. I consider it lucky that I'm still able to find beautiful moments, meaning, connectedness, peace and sanity in life, even with extremely limited mobility, and a physical illness that doctors can't cure. And I retain the ability to communicate my lucidity, and my struggle through the written word. 

Things could always be worse, and have been.

This talk of mental illness is very close to the bone for many chronic fatigue patients. Millions of people have been inappropriately treated for decades due to misunderstandings about the illness by medical profession. "Can't find anything wrong? It must all be in your head...." I am personally 100% sure this illness is not all in my head. But having an invisible, variable, chronic illness is such a mind-fuck that, even for me, doubt sometimes creeps in. I can't imagine how it would be if I did have a history of mental illness, or if doctors were thinking that I was just making it up to get attention. I am lucky to live in a time where patient advocacy has gathered enough momentum, and biomarkers for CFS/ME/SEID have been recently discovered by science, so it is far less likely I will be sent to a psychologist to 'cure' this invisible, physical illness.

In the meantime, come to think of it, basket weaving does sound like a nice gentle, contemplative past time achievable from the couch, floor or bed, while myself and other patients wait for the researchers to learn more about how to help us. So perhaps becoming a literal basket case shall be my next career goal. Stay posted :)






Monday, 14 August 2017

A snow day

There are two ways of thinking about what I saw when I woke up this morning. 






"Woooowsers, what a stupendously glorious snowy morning! Holy moly I'm lucky I get to see this crazy beautiful stunning mountain from my house!"

Or

"If I were not stuck in cfs jail I would totally be up there already, one of the first people climbing up the zigzag track to the deserted, road-closed summit, taking in huge lungfuls of crisp frosty air, glowing red cheeks, snow getting into my boots, snow falling off plants down the back of my neck, eating snow and throwing snow, with a bum-sliding bag and a thermos of hot tea in my backpack. But no, I'm here stuck on the floor in stupid boring CFS land and I might never feel that sort of life-full joy again. Boo ." 





(Fun-in-the-snow day two years ago)


Yeah yeah. And I berate myself when I feel the second and not the first. For dwelling on what I don't, rather than what I do have. And then berate myself for berating myself, because shoulds are stupid, and distract you from living in the moment too. And I know that even if I were healthy, I might have to go to work, rather than go snow-playing anyway. Or one of the many other million rivulets life could take me down.

But what if I'm allowed to feel both of those things? And all the other things too? All the sad and happy and boring things all together at the same time? Because I'm a human and life ain't black and white and binary.

And yes this post is a backlash against the 'fix everything by positive thinking' bullshit that is all over the internet, and its insidious denial of reality. 


Because you know what? I reckon I am allowed. Yeah. So there.

However I do sincerely hope the mountain snow brings delightful joy and laughter to many others playing up there today! xx J

Sometimes CFS feels like jail

















Thursday, 6 July 2017

The zones of CFS / SEID

Here is a little diagram I drew to try to explain why managing this invisible, variable illness can be so damn difficult.



(I've been having an unexpected few days of reprieve: clear headedness, less symptoms and I seem to be getting away with a higher level of activity than I have for several months. I talked to my housemates and had a good laugh for the first time in a month, and I even played the piano for the first time since Christmas! In the past I would've thought "yay I'm finally getting better!". But now I totally don't trust it. It's like if a cruel jailor suddenly starts being nice to you. I know Im probably pushing the boundaries and falling for the 'do too much when you feel good, then suffer later" trick. That I'm probably in the green and purple zone, rather than an expanded blue zone. But still,  I can't stop the hope that this improvement is for real from bubbling up....)

Friday, 30 June 2017

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. S
ome 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. 


Thursday, 29 June 2017

"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

Wednesday, 28 June 2017

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
  1. Bad science misled millions with chronic fatigue syndrome. https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
  2. 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
  3. Do graded activity therapies cause harm in chronic fatigue syndrome?http://journals.sagepub.com/doi/full/10.1177/1359105317697323
  4. Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity. http://phoenixrising.me/archives/17902
  5. Postexertional malaise in women with chronic fatigue syndrome. https://www.ncbi.nlm.nih.gov/pubmed/20095909
  6. 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