Introductions

ME, MYSELF AND THE GODDAMN EPSTEINN BARR VIRUS

Hello! I'm Jen. I was born in the early 1980s. I'm a Pisces. I have an irrational hatred of astrology. That picture is of me planting native plants in an old shopping trolley. I'm turning an old swimming pool into a frogprog. I live in Tasmania, which is why I am wearing a wetsuit. 

Just in case you are not my facebook friend, and a random stranger on the other side of The Internet who has no idea who I am (to tell the truth, I have only hazy ideas about who some of my facebook friends are), I thought I would introduce myself, because I the blogs I like the best are those in which the authors are most candid. I am quite awed by how brave some people are in putting themselves out there for all the world to see. I am quite open about having chronic fatigue, as I feel no shame in it, however there are many other things that I probably won't reveal, because there's people I don't want to hurt or embarrass. (Ummm, mainly myself). So here we go. The Great, but Partial Revealing of Myself to The Internet.

Oh what the hell, since I already put the effort into writing it, why don't I just copy and paste the paragraph I wrote about myself for an Internet dating site, 3 or 4 years ago, after the conclusion of a 9-year relationship that occupied the most of my 20s. (The half-hearted foray into Internet dating hasn't yet yielded any luck, but I have tried to give a few blokes a lesson on HOW TO HAVE A CONVERSATION. Bloody hell, there are a LOT of lame conversationalists out there. But that, is another story). So, “LOL”, here it is: 

What makes me happiest is living in Tasmania, getting outdoors, riding my bike, walking up mountains, sea kayaking and body surfing in the wild southern ocean. I also quite enjoy eucalypt forests in the mist. I love hanging out with people who care about sh*t and do things. I am alternative-thinking and concerned about the state of the world. I'm in into growing food, ecology, yellow gums, sustainability projects, transition towns, the post growth economy, community events, laughing, games, fun-for-free, food experiments, friends, sharing and looking at clouds. And yes, I have been known to hug a tree or two. I'm dressed and furnished from the tip shop and I'm not interested in being anyone other than myself. I'm down to earth, practical, earthy and always honest. I'm really quite happy - I've got lots of great friends, interesting projects, and I live in Tassie, my favourite place in the world! So apparently nowadays internet dating is the way to find something other than your trusty hot water bottle to keep you warm in winter. (Although I do have a fantastic hot water bottle cover. It was knitted by a CWA granny and its got spotted quolls on it). So here I am giving online dating a go. How awkward.  I much rather prefer hanging out with real people, walking on the mountain and going swimming at the beach than spending time on the computer, so sorry if I'm really tardy to reply. And please note, I'm not interested in anyone who doesn't compost, and I probably won't reply to you if you just say "Hi" in a message").

Ha ha! Hilarious. I thought about deleting the bits about hot water bottles and being awkward for this blog, but actually, I think they're quite funny, so I'll keep them there. (Ha ha! Take that awkwardness and embarrassment! You are revealed to The Internet!)

So until recently, life for me was all about having loads of wild, exuberant fun in the outdoors in Tasmania, trying to save the world through organic food co-ops, community gardens and tip shops, working as a track ranger in the wilderness, studying an online diploma of science teaching, wondering how I was going to find a new boyfriend. 

But now it's not just me in my life! I have a co-inhabitor! And no, its not the type I was hoping to find on the Internet dating site. Its a GODDAMN VIRUS! The Epstein Barr Virus! AKA glandular fever! AKA 'the kissing disease', and I didn't even get to snog anyone!!! Or at least it is remnants of “The Glandj”, (as I affectionately call it), in the form of post viral fatigue. And for reasons still unknown to science, I now have HARDLY ANY ENERGY and I feel sick when I try to exercise. I can't do any of those things that I used to use to define me as a person! Ha ha! How hilarious. Its like a great universal joke or something, except I don't believe in that sort of stuff.

So here's most of what I spend my time doing nowadays:

1. Sleeping
2. Lying in bed
3. Restorative yoga (aka lying on the floor)
4. Crocheting beanies and jellyfish for my friends whilst listening to ABC radio national podcasts
5. Reading kids storybooks (adults books are way too hard and serious).
6. Sitting in the bush out the back of my house watching my chickens dust bathe, watching ants and sometimes pretending I'm sitting under the water in a kelp forest. 
7. Hanging with my housemate's dog
8. Looking through my binoculars at the mountain. Aka: Adventures on the mountain from Bed!
9. Sometimes, if I'm lucky managing to do the basics of looking after myself like shopping, cooking and cleaning.
10. Learning how to ask for help for the basics of looking after myself
11. Meditating, or trying to
12. Feeling frustrated and sad and scared and worried about having chronic fatigue
13. Feeling zenful and at peace about being a slow person instead of a busy person, and enjoying that I get to lie in the sunshine and I don't have to go to work, and that being slow and unbusy is kind of rebellious. 
14. Checking facebook on my smartphone a million times a day and wishing people would be more interesting
15. Writing things

(Here is me reading Lassie to Shasta the dog.)

Right now it is September 2016. This time round I got fatigued in March this year. Its been 6 months. But I've had it 2 times before.

The first time was during the winter of 2011, and I don't remember much about it, except that is was a stinking horrible flu that took 3-4 months to fully recover from. 

The second time in January 2015, when it was diagnosed as the Epstein Barr virus. That also took about 4 months to recover from – starting from when I first noticed something was weird: “ Hmm. I don't want to go swimming in the freezing cold Tasmanian ocean, which is usually my favourite thing. And I'm tired in a weird sort of way. Something is not right”, to when I declared myself fully better, as I was able to ride my bike all the way up the very steep Hobart hill that I live on without stopping, and feel awesome and only 'normal tired' at the top. (I'm not bragging, but you've got to be a pretty fit and healthy to do that : ) : ) ).

In between stints of “the glandj” and until this time too, I have been disgustingly healthy, charging about doing all sorts of ridiculously outrageous, adventurous, exhausting and fun things. Rafting the Franklin, volunteering on an organic garden project in Indonesia for 8 months, 3 weeks of nonstop bushwalking and swimming in the northern territory, sea kayaking around Maria Island, jumping on trampolines, riding my bike everywhere, playing games, studying, working, composting, gardening, having a lot of friends, swimming in the ocean, buying a house and turning an old swimming pool into a frogpond. 

Both previous episodes of glandular fever were pretty uncomplicated. I got sick. It took a long time to recover, but my progress was sure and steady. The second time I even enjoyed myself. “It's just like a holiday in slowtown, it's quite lovely, I'd even recommend it if you need a break” I said. Huh.

This year in March, towards the end of my season working as a track ranger, I started to feel the now familiar fatigue again. I assumed I'd just be down and out for 3-4 months again, maybe less. But 6 months in and I've probably just had my lowest, crappiest month yet. I am a Long Long way from Healthy. (You can read some of my other posts, especially the one called “The Worst of It”, to see how battered about I'm feeling at the moment.)

But I'm learning stuff. LOTS of stuff. And hey, what should I do with all my TIME, but write yet another Chronic Fatigue Blog for The Internet? Everybody with Chronic Fatigue is doing it! While some are mundane, several have actually been really helpful to me and I'm really grateful to their authors. It's reassuring to have my symptoms validated by other people, and to hear some really valuable insights and practical tips from others who've been down the pathways and pitfalls of chronic fatigue. 

So. There you go. That's me, my life AND the Epsteinn Barr virus.

Its nice to meet you, in an Internetty sort of way, and if anybody enjoys what I have to say, then I am greatly honoured : ) My best regards, Jen

PS. The three best CFS blogs I've read are

• Green Girl Fights Fatigue (practical)
• Turning Straw into Gold by Toni Bernhardt (Buddhist.)
• Health Rising (Science).

THANK YOU to their authors : ) 

The worst of it

Often I'm very positive about my experience with glandular fever / chronic fatigue. So today, because I've had a crash into the glandjy-pit-of-doom again and I'm totally over it, here is a post about the worst of it. (WARNING: This post is about Doom, Gloom and Shitful Flueyness)

Some people describe the crashes of chronic fatigue as feeling like you've hit a brick wall, and then sometimes the bricks fall down on top of you too.

Except I wasn't going nearly fast enough to have hit a brick wall that hard.

I was just minding my own business, dawdling along, resting, carefully planning and limiting my activities, asking for help for things I couldn't do, and only gently trying to feel where my boundaries were, every now and then.

I didn't hit a brick wall, a f***ing brick wall came out of nowhere and slammed into me!

When I first got fatgiuey-sick this year (the 3rd time), and last year (the 2nd time), I spent a lot of time contradicting those who said they were sorry for me, assuring them that I didn't really mind having glandular fever. I actually kind of liked it. It was like a forced holiday in slowtown. A somewhat inconvenient holiday (I had heaps of plans that I had to abandon), but apart from a short period of feeling fluey, it was really not unpleasant. A time for reflection, sitting still, watching clouds change on the mountain, noticing small things, soaking up the sun, and being forced to be the opposite of what our cultures tells us to be. Unbusy.

But the first time and the second time I got fatiguey, I never doubted that it was just a holiday. Both illnesses were about 4 months each (between noticing something wasn't quite right, and then again able to charge about and ride my bike up the long, steep hill I live on without stopping). Neither time was I given cause to doubt that I wouldn't regain my energy, my health and my life.

This time, however, this 'holiday' has turned into more like long-term, down-and-out unemployment. And sometimes turfed out of my home and beaten-up to lie bruised and battered in a stinking ditch unemployment.

Not literally of course. I'm sitting in my nice house that I don't struggle to afford because of housemates, savings from summer and centrelink. I'm surrounded by a supportive community who bring me food and flowers. Two wonderful friends have even come to just sit, read their book and pat my head during this latest crash, to keep me company and abate my loneliness, even though I can't talk.

But the 'turfed in a ditch' metaphor explains how shitful the crashes can be. During a crash I can't talk to or even smile at housemates. I can't do basic human things like deal with standing upright and dealing with being in the presence of more than one person at a time. I become a subhuman zombie, slumping along to the kitchen repeating “food, water, tea. Food, water, tea” to myself, so I can remember why I got out of bed. Its not that unusual Everybody gets the flu, and that's what its like. Except I haven't felt healthy since March, and during that 6 months I've had three major 1-2 week fluey descents into the pit of doom, and countless minor ones. I'm really really over it.

Between crashes I meander on alright for a bit. Perhaps I start to save up a bit of energy. Feel okay. Enjoy myself sitting in the sun and feel grateful for the opportunity of slow time. Maybe one day, I even start to feel a lightness and spring in my step, and begin to feel hopeful. Then bam, a brick wall comes out of nowhere and slams me back in a stinking oozing pit, robs me of all my carefully saved energy, and kicks me in the chest for good measure. I can't fight it. There's nothing to do except lie there, and wait until it passes. Wait until the shit drains away. Wonder how long it will be. Wonder if I'll ever get my health back. Wonder how many times I'll get slammed down again. Wonder if this time I have been stripped back to my core enough. Is this the rock-bottom from where I'll make my recovery? Is this the flare-up of sickness that will stimulate my immune system to actually do its thing and get me healthy again? Or will I just get weaker, with each further crash, fall deeper in the hole and lose my strength and capacity for recovery.

Chronic fatigue isn't the worst possible thing ever. It doesn't kill you, and I don't have the worst version of it. Be assured that, whether it is helpful or not, I have read far more horrendous tales on other peoples' blogs!

But it is really shitty, losing your health and not knowing if or when it will come back.

I am starting to feel like I'm on the other side of this latest crash (I'm able to type on a computer today). But..... I just don't trust my body any more. I am feeling hopeful about tomorrow and crawling out of this ditch. But I know that in order to avoid being disappointed, I need to let that go, and just feel grateful that today is okay.

Today is okay. Today is okay. F*** chronic fatigue, but today is okay. 

(NB. I haven't drawn a picture for this one yet, and googling "lying a ditch" turned up some pretty ugly results. Much uglier than chronic fatigue. However googling "shitty ditch" did come up with this website, if contemplating people worse off than you helps [I tend to think it doesn't, but anyhow]. Here's some of the shittiest jobs in the world! https://dilsantosh.wordpress.com/2011/03/18/do-you-like-your-job/).  

Me and Mr Toad

“Me and Mr. Toad”

As mentioned in a previous post, reading kids books is one of the nicest things about glandular fever. Kids books can be easier to digest, very clever, and often gloriously silly. Which is a good thing if you have brain fog and also need some distraction from bed-bound gloominess.

I recently borrowed The Wind in the Willows from the public library, and it was great. I'm sure it was read to me as a kid, but I had forgotten most of the whimsical location, storyline, and the endearing idiosyncrasies of its 4 main characters.

At one point in the story, Mole, Ratty and Badger decide that something needs to be done about their generous, but reckless friend Mr Toad. Toad has a new obsession with new shiny motorcars that go “poop poop”. However he is constantly terrorising the roads, crashing, and getting in trouble with the law. His friends decide they need to lock him in his room and keep watch over him until the addiction to speed wears off, he repents his ways and he promises to be a more humble, responsible Toad.

But Toad is a sneaky conniving amphibian and he escapes out the window. Once free, he cannot help himself from stealing a motorcar and careening off to the open road, feeling the wind rushing past his face, going faster and faster, feeling mightily pleased and congratulating himself on what a clever, daring and handsome Toad he is. It is only when he is thrown in jail that he descends into gloom and misery, bewails his ostentatious ways, and berates himself for having been so arrogant. Although when he escapes, he immediately begins composing over-the-top self-congratulatory speeches and songs again.

With chronic fatigue, discipline is the main tool needed to save up and store energy for recovery. Careful, mathematical pacing of activity is the only proven way that people have used to get better. Alhough it doesn't work for everyone, it has a much greater success rate than any magical and expensive vitamin mix on the Internet. So even if I feel healthy and strong one day, I need to rest. The rules say so. A very common thing with chronic fatigue is that the response to exercise is delayed. (This is known as post exertional malaise) . At the time you might be feeling great and having fun, and so you don't notice any subtle signals that you have done too much. Its not until the next day that you get a very clear signal that you overshot the mark. For me, I can't get out of bed and the yucky fluey feeling is coursing through my veins and hammering around inside my glands.

But, discipline is so BORING! It denies all the and fun and joy and vigour in life! When I think of “discipline” I imagine a teenage boy (sorry for genderism) on detention after school. Its a glorious sunny afternoon, and all he wants to do is run and playfight with his friends outside, kick balls and romp about being a major buffoon. But he got caught doing something naughty and rebellious in class, and now he is glowering at the teacher and feeling utterly resentful, angry and caged in. Discipline sucks!

I am like Toad, in that on days when I feel good and I get a whiff of freedom and strength, I get all self-congratulatory. “This must be it, Jen. The start of your recovery. You've hit rock bottom and it's all up from here! Well done for being so sensible and good at looking after yourself that you're getting better now! You are an awesome health machine! Wooohooo, what shall I do with all my energy tomorrow?? Watch out world!!! Poop poop!”

And then, “tomorrow”, I can't get out of bed and I'm like “Jen, you complete idiot. You are like a stupid dumb monster blundering around with your eyes closed and falling into holes all over the place. How many times has this happened before? You know you need to tread carefully, because you are just too dumb to see when you're about to fall in a hole. You got too cocky, you crashed the car and you got turfed in a ditch again.”

If you've broken your leg and are now wearing a plaster cast, it is to protect yourself, from yourself. It may be frustrating, but you can't break out of it without considerable effort. But when you need to impose the rigid cast of discipline on your activities, and it's not actually a real, tangible constraint, its just made-up, best-guess sort of stuff (no more than 2000 steps a day! Have a rest every afternoon!), then its really hard!

And so I thought yesterday, that I need to change my attitude towards discipline.

Not as a stupid mean old teacher putting me in unfair detention.

But as a kind and loving friend who cares about me more than anything. Like Mole, Ratty and Badger, locking obstinate old Mr Toad in his room. Discipine is kind. It helps me, it protects me, it keeps me safe. I need it.

"Discipline, my dear kind friend, may I always recognise your wisdom and your support, and be able to distinguish you from fear and imagined limitations. "

No more "poop pooping"

The "I'm not Here Hat".

I live in a busy, social, 5.5 person, hippy sort of share house, and it's had some pretty fun times. But it is a big challenge with chronic fatigue. I do really like most of my housemates most of the time, and I also rely on them to bring home veggies from the farmers market, cook food, do dishes and cover my share of house-jobs when I'm feeling really low. However there are many days when I just don't have the energy to talk with actual real-life humans. (On days like that, I only talk to dogs and the internet) I'm sure that other chronic fatigue sufferers would understand. Or just imagine how you feel like talking when you have a rotten flu. Some days I can only grunt in greeting whilst I heat up a frozen meal on the stove as quickly as possible, then slump back to my room to eat it and lie back down again to recover from the exertion.

It feels really rude, it happens quite a lot and I stress about people misinterpreting me as a grumpy-bummed people-hater. 

So I came up with the idea of the “I'm not Here Hat”. I sent the following message to my housemates:

“Dear housemates and frequent-dropper-innerers. It is time to introduce the "I'm Not Here Hat". Its blue and white and stripey. It is not an unfriendly hat. Its simple message is that 'I'm not here. It's not that I don't love you, nor wish that I could talk with you or clean up dishes or do things, its just that my energy gauge is very close to zero warning lights are flashing about current, or impending crashes into the Fatiguey Pit of Doom. I'm only out of my room because I need a cup of tea / food / to go the toilet'. If I'm wearing the hat, you can act like I'm not here. If you'd like to communicate with me, try sending a text message, just like I wasn't here. When things get dire I'm still usually able to text message.. Of course, if I'm smiley and chatty whilst I'm wearing The Hat, I've probably just forgotten to take it off, and you don't have to ignore me, that would be weird. And it does not apply to other hats I may wear, they might be to keep the sunshine out of my face”

I was quite proud of my hat idea, and wish I could have thought of it when I was under the pump doing assignments and lesson my teaching degree online last year, and the only desk in the house was in the shared lounge room. 

But then the next day a neighbour-friend dropped around. I heard him from my room. I sent him a text message saying: “I'm too sick for humans today, but help yourself to a cuppa and whatever”.

Done.

Boundaries.

Communication.

And then I began to feel terribly lonely.

I had just asked my housemates to pretend I didn't exist.

What a stupid idea. I'm not not here! I am here! I am real and I'm a whole real person and I don't want to be ignored! I just temporarily don't have the physical capacity to speak or interact with anybody. Especially anybody who wants anything normal, like conversation or a pleasant smiley interaction. It sucks that the the only solution I felt was possible was to isolate myself from people and ask them to pretend I didn't exist. It's not the “I'm not Here” Hat. It's the “I'm a really really really sick person hat”. 

So I updated the message. But I'm still not sure how to deal with intense feelings of isolation and loneliness that accompany the severe energetic limits on my interactions with real life humans. Chronic Fatigue can really suck. 

The Bravery of nondoing

What do you first imagine when I say the word “bravery”?

The image that comes to my mind is of a person running into a burning building to save a child. Or perhaps somebody standing up on a bus and speaking out against racism. It is usually an act of doing.

In the midst of this culture that cries “Yolo!” (You only live once!) and glorifies busyness, I'm guiltier than most of trying to pack in as much doing as possible into my life. I used to silently scoff when people said they did 'nothing much' on their weekends, when I'd rafted a wild river, mulched the garden, explored a few kilometers of new trails on my mountain bike, been to a party, attended a meeting and written a grant application for our local food co-op.

And so, it is a big challenge to face up to all the non-doing that chronic fatigue has brought this year. And I have come to realise bravery it can take.

For example:

- The sibling, or warring country who doesn't retaliate in conflict.

- The quitting smoker who resists the addiction time and time again, hundreds of times a day.

- The counsellor who listens and gives space to what somebody needs to say rather than pushing in with their own advice or agenda.

- The parent who doesn't interfere and allows their child the freedom to hurt themselves and learn.

- The sick or injured athlete who postpones their desires and waits until they are properly healed to dive back into training.

My small example, that inspired this line of thought, was that I chose not to go away to a lovely little place on the East Coast this weekend.

At the moment I stay at home and rest most of the time. Only it was harder to do so this weekend, because the option to do otherwise was so nearly achievable. I almost could have gone. It wasn't a bushwalk or a sea kayak or even a walk down the street, which are all pretty laughable propositions at the moment. It was to a peaceful cottage, where somebody else could have driven, others could've cooked and I could have rested.

Except it was three and half hours drive away. Three and a half hours of sitting upright, swaying and bracing with the corners, seeing the world rush by at high speed, and feeling the temptation to participate in alert car conversation with more than one person at a time.

But how I wanted to go! Not to be able to jump into the freezing, exhilarating ocean. Not even to be able to walk on the beach – I was open to that being too far for me. But just to leave my house, and to hear the waves and to smell the ocean. And to be around others. (Even if my fatigued state make hard to interact with more than one or two people at a time at the moment.). It can be lonely having chronic fatigue.

I got “FOMO”. The fear of missing out. And anxiety about feeling stagnated from spending another weekend at home with only my own company, again. The temptation of a fresh, sweet coastal breeze and fresh company wafted past my nostrils and tugged at my heart.

But on Thursday I was exhausted. I decided not to go. It was too far. I knew I could have pushed myself and gone, but I also knew that was attached to the very real possibility of a major energy crash, further setting back my recovery.

And that was when I recognised the bravery of discipline. I told myself that if I save energy now, it will go towards to healing in the long run. That might not be true, but I choose to believe that right now. Pushing myself sure hasn't helped, so far.

I texted my decision to my friend.

And I thought, sarcastically, that people pay to go away for silent meditation retreats, to sit with themselves and all their shit, with no distractions, for 10 days and more! And I get to hang out with myself, without distractions, for yet another weekend, FOR FREE! LUCKY lucky me! Huh!

I almost changed my mind on Friday as I was feeling a bit better. I even composed a list of what to bring. But then I lay down and let the fatigue catch up with me again. I closed my eyes. I didn't get up to pack.

I guess, in the long run I hope to be be grateful for this opportunity to lean into the hard stuff. That's where the learning happens, they say.

And perhaps it wasn't the actual trip I was craving, but the feeling. The feeling of freshness, into my very slow life.

______________________________________________________________________________

Its Sunday night now. I had a fine weekend. It wasn't very exhilarating, or interesting. But it was fine. I rested a lot. I helped my good friend write a job application. I ate lots of cream cheese and I had nice conversations with some friends over the Internet. I watched some quality comedy on ABC Iview while crocheting a beanie.

On Saturday there was some lovely warm, light rain. I opened my window during the night and awoke to a gentle breeze wafting in. I went and lay in the scrappy, weedy bush out the back of my house. I listened to spring-time chattering of the wrens, robins and rosellas. I watched a beam of afternoon sunlight cut through the clouds that were hugging the mountain, and highlight the wings of a small swarm of hovering insects. I breathed in the sweetness and the freshness of the damp soil.

It is okay, not to go anywhere or do anything. It is possible to feel joy, even. I think I even felt it. Its free and available, when I sit still and pay attention.

My weekend was fine. Things are okay. And I am not exhausted and sick-feeling now. Thanks to discipline. Thanks to the freshness of the rain. And thanks to the bravery of nondoing.

Giving up "Hope"

I had a minor energy crash again yesterday. I spent most of the day in bed, all brain fogged with my glands prickling and swollen, and feeling pretty despondent about being kicked back down the hole again, when I thought had been on a slow, steady upward trajectory the last few weeks.

Why did it happen? Who knows. Maybe I did too much on Saturday, even though it didn't feel like it at the time. And why am I okay-ish again today, when the last crash fully flattened me for 2 weeks? Dunno.

Anyway. I've been wondering about hope.

It all likelihood, this won't be a long term illness for me. Maybe a year, give or take a few months. Most people don't get super long term chronic fatigue from glandular fever. But the people who do are the ones who continue blog and write about it and dominate the web forums! Once they get healthy they stop blogging and get on with their life! However despite its unlikelihood, I'm still pretty scared of the spectre of long term illness. Like 10-15-20+ years. It happens. To lots of different people.

And so I realised yesterday, that for all my 'acceptance' of being fatigued, I have been clinging quite tightly onto the (albeit fairly reasonable) hope, that I'll be one of the people who's only sick for a short time. That before too long I'll re-enter the world of the healthy and energetic, with a few lessons that I learnt in slowtown packed away as souvenirs in my suitcase, and a better person for it.

The (very small) chance that I won't get better is a scary boogeyman in the corner that I am afraid to look at.

This hope is like a life buoy that I am grasping onto, providing the buoyancy to my sense of wellbeing.

What would happen if I let it go? Into the wild, stormy ocean?

Would letting go of hope enable me to more truly 'be here now', and more truly accept my limitations?

Would it release me from the despondency and disappointment that happens when I think I'm on the path to getting better, and then for no apparent reason I get kicked back down again?

If I let go of hope, would I then be less inclined to get excited when I am feeling good, and (usually inevitably) push myself too hard and overdo it?

Perhaps, if I let go of hope, my view could instead be: “I feel good today. I'm grateful for that. However I cannot expect tomorrow will be the same”.

And conversely: “Yes I feel tired/sick/sad/lonely/frustrated today. But I have no reason to expect that tomorrow will be the same”.

Embracing the transience of both joy and suffering.

Of course, if abandoning 'hope' meant abandoning self-care, the will to live, to learn, to keep researching and carefully trialling different health experiments, then that wouldn't be so great.

So can I still care for myself (and the world), whist letting go of hope? For some imagined, future vibrance? For something other than what is my experience right now?

And contemplating this question more today, I realised that my hope is a very stubborn thing. (Or my attachment to hope / fear of the bogeyman / fear of the wild ocean is). How does one let go of hope, if indeed it is a wise and brave, rather than reckless move, to release ones grasp on ones lifebuoy?

Be careful my dear healthy friends! Becoming a HAVING A REST cheerleader...

Its a new experience for me, not being able to trust my body to be strong and reliable and resilient.

I remember getting a medical for a bus license when I was 21, and the doctor told me I was 'disgustingly healthy'. I had felt pretty proud of that until recently.

“I'll just push through this head cold / sleep deprivation/ hang-over / over-exertion / stress at work. I can't afford to stop. I'm strong. She'll be right”.

Now I get nervous when I see so many people doing that around me!

Don't trip your switches guys!

But most people don't. They just keep pushing through and getting away with it. But for some reason I got a fuse got blown and the power supply cut off!

Sometimes I wish I had rested more when I was busy active Jen. I even wish I believed in a god who forced us all to have full days of rest on Sundays. Not relentless adventuring, projects and fun! No! Forced rest and reverence for you little humans!

But I also don't regret acting in the best way I knew possible at the time. Chronic fatigue was just not on my radar, as a thing that could affect 'disgustingly healthy' me.

Anyway. Now I now see the value of rest. And of space.

Fires need air spaces between the logs to burn, my dear active friends, and although you probably won't accidentally CFS yourself, please keep that in mind! All your relentless working hard and playing hard and sleep when you're deadding is making me nervous!

[NB. I am also aware that it is probably not my fault in the slightest and that I didn't “CFS” myself. It just happened, like things do in life. Here's me nipping little thoughts of self-blame in the bud ) ]

Here is a poem by a lady called Judy Brown: 

FIRE ~ Judy Brown

What makes a fire burn
is space between the logs,
a breathing space.
Too much of a good thing,
too many logs
packed in too tight
can douse the flames
almost as surely
as a pail of water would.

So building fires
requires attention
to the spaces in between,
as much as to the wood.

When we are able to build
open spaces
in the same way
we have learned
to pile on the logs,
then we can come to see how
it is fuel, and absence of the fuel
together, that make fire possible.

We only need to lay a log
lightly from time to time.

A fire
grows
simply because the space is there,
with openings
in which the flame
that knows just how it wants to burn
can find its way.

Observations from a sunshine connoisseur

For a long while I've been of the opinion, that the 1st of September was a rigidly artificial, superficial and arbitrary time to joyously declare "Springtime!". The daffodils and wattles have full-heartedly blooming for months already, and we all know it can, and most likely will, snow, blow, rain and freeze upon our little mountainy island right up until December and beyond.... However, during this Winter of convalescence I have become quite an astute and discerning seeker of small and transient pools of solar-light, where I dare to bare as much skin as the changing air temperature allows, in order to soak up the healing, warming powers of Winter Sun. And it was on the 1st of September when I did notice a distinct change in the quality of light. It felt a little burny. It got too hot inside my brain and i so woke up groggy from my nap on the sunbed. I had to move. And now, today, I am a shade sitter and I am allowing more validity to calender time, clock time, and its regular tracking of our orbits through space.

The great chronic fatigue prison?

Some days chronic fatigue feels like a prison, with cruel gaolers who promise small freedoms (a trip to the beach!), then take them away again (oh we changed our minds. Actually it will be all day in bed feeling crappy for you today!) and the more I struggle and rile against being locked up, the tighter and more painful the invisible constraints get. But some days I let the fatigue be an all-consuming excuse to be kind and gentle and loving with myself and to allow myself to be here right now, open to whatever is. Did I ever allow myself to do that before?

"YOU DO NOT NEED TO GO ANYWHERE OR DO ANYTHING TO BE HAPPY"

What do I miss?

The tallest mountain in the south west! 3-day trip with two of my housemates to Mount Anne, this time last year

I've been reading a few chronic fatigue blogs, and its reassuring to have my symptoms, especially some of the vague ones, validated by other peoples' experience. Although I do get scared when I read about people who've been sick for years and years, and and I've only been 5 months and I'm holding onto a hope that I”ll be better by summer!

I read a post the other day about what the author missed the most about being healthy. Her number one thing was spontaneity, followed by variety. And I thought, hmmm, – sure its a bit annoying I can't really be very spontaneous at the moment– but I can plan my days, its not that hard! Actually, I get to spontaneously pull out of dates and appointments all the time when my energy takes an unexpected turn for the worse - spontaneity ain't always that great! And variety – well – the clouds and seasons are always changing out my window and I had so many different people bring me meals, so I've had plenty of different things to eat, so I guess I'm pretty lucky in that regard. Anyway, it got me thinking about what are the things that I miss the most.

1. Exercise. Exercise, exilaration, exuberance, wild outdoors adventures and endorphins and feeling alive, with your heart and blood pumping, face flushed, cold skin. Swims, body surfs, bike rides and walks up hills and wild alive joy and FUN that involves running around and silliness.

Wild sea kayaking ladies on Maria Island! 

But. I'm learning to sit still and be where I am right now, and still feel joy from being alive among the other life around me, and notice small things in the world. And that is often quite lovely.

2. Being able to do things like carry rocks and dig holes and build fences and make my garden more like the permaculture paradise I wish it was, instead of the half-done work in progress.

Permablitz at our house 2 years ago

But. My housemate built a fence and carted some mulch, and I'm carrying back one small rock a day from the bush where I go to sit. Over the weeks I have made real progress in lining the swimming pool edge with natural rocks, creating more habitat and less straight-edginess. And I've got time to plant flowers and do tiny minor pottering jobs, and also scheme and dream and observe and contemplate, instead of charging into doing things, and/or being overwhelmed by the scope of my plans. I'm learning how to break the big jobs into little jobs. One rock at a time.

3. Feeling useful, like someone who can volunteer and give back at least as much as what I take – to my sharehouse, with my friends and in society. 

Me creating habitat for frogs in our old backyard swimming pool

But maybe now I have time to learn to be less judgemental of others, more compassionate, and also learn the art of nondoing rather than reactive doing. To learn acceptance and trust that things often will sort them out for themselves, even when you don't interfere. Fully realising my interdependence in this world, fully letting go of the myth of independence, allowing people to help me and finding also self-worth beyond doing.

4. The rest of Tasmania. Sure I live in a pretty nice house with an awesome view, but I do miss the rest of Tasmania and all the other places I love on this island.

Wooo! Hardcore Mount Anne circuit walk 3 years go

I guess I'm learning to love this one place more deeply then. And the rest of Tasmania will be more vibrant when I do visit it again, because I have missed it and I I will see it with fresh eyes.

5. Being able to distract myself from myself doing things and going places. Some days I get pretty bored and sick of my own company!

I've already spent a lot of time by myself, working 5 seasons as a track ranger on the Overland Track

But even when we're healthy we've got to put up with our selves all day every day. Its good to learn to be as kind and gentle with ourselves as we can be with others.

6. My identity. How I like to see myself as an active outdoors, wild adventure-having, silly- laughing, bare-skin kayaking, mountain climbing, bike riding, nature-nerding, garden-building and reliable doing-lady. What if all the new people I meet think I'm really boring, unreliable and/or just plain lazy? I'm not boring! I'm an adventure lady! I'm a doing lady!

Travelling in Nepal, aged 18

Ha. Identity and ego. That old chestnut. But it turns out this slow, nondoing person is me as well. And perhaps in this quiet, slow time, I have the space to connect with a more fundamental part of being, something more core, that exists beyond all the transience and busy-ness of doing. Maybe.

So, despite all the things I miss, I'm still quite well and as you can see I've been having my zen moments. I still rate my wellbeing pretty much the same as always. Around a 7-7.5 out of 10. Hardly ever below 6, sometimes up around 8. (Apart from when I was struck down with the flu, which I'm not even going to bother to try to be positive about). At my current energy levels (I'd say I'm currently about 7-8% of my 100%, which I rate as 'riding my bike up mount wellington'). I can still do lots of really nice things, like talk to people, look at really beautiful things in nature like wattles and blue wrens and flame robins, spend time outside with the tassie breeze blowing into my face, soak up winter sunlight and crotchet people beanies. If I didn't have those things, I think I would struggle a lot more. So, so far, this glandular fever seems to be a very gentle illness. And despite all the things I miss, many days I am grateful for this new perspective and the stuff I get to learn.