Saturday, 10 June 2017

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.

Monday, 5 June 2017

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).

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.