Heros of chronic fatigue

Lots and lots of people have been super helpful and lovely during this 8 month (and ongoing) period of illness for me. In this blog, however, I would like to introduce 4 of my

In no particular order..... 

This is Gaby. Gaby is 70 years old and recently bought an electric powered tricycle so she can ride down the rivulet track wearing a helmet that looks like a watermelon. She goes to the local cafe to pick up their coffee grounds and compost, which she feeds to the monster silverbeet in her garden, that is taller than her standing on a step ladder. 

Gaby has done food shopping for me, has made me magic soup with vegetables from her garden, and comes around regularly to give me head massages. Thank you Gaby 

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This is Millie. When times are tough, Millie puts on her sparkly pink and yellow crises management outfit and goes out to meet the challenge. She likes planting both metaphorical and literal asparagus, watching her free range guinea pigs, drawing pictures, telling stories and devising a manifesto for a more awesome world. 

Millie is the leader of the asking for help cheer squad. She is also one of the chief cfs understanders, because her husband Garth has had it for 8 years. Even though Garth can get very tired, and grumpy when he tries to fix his CFS by eating only cabbage for weeks at a time, she married him anyway. Millie reckons that if we all were less stubbornly independent and asked for help more, it would allow our friends and neighbours to be generous to us, which would give us all warm fuzzies, and we'd all live in stronger better communities. She has also brought me vegetables from the farmers market, patted my head and always cheers when I ask for help. 

Thank you Millie :) 

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This is Qug. What Qug really likes doing is rowing her boat in the tanniny waters of south west Tasmania, looking for her favourite birds and pulling into small sheltered beaches to admire the driftwood and sea beans. She also loves posts cards, membracid tree-hoppers, copepods and pet rats. 

When Qug was a kid in the 1980s, her mum had CFS. This was back when it was called the yuppy flu, and lots of people thought you were just pretending to be sick because you were lazy or wanted attention. During these years Qug and her mum lived mainly off bottled fruit and yoghurt. 

Qug is the Number 1 bringer of quality children's literature to my bedside, and was the lead-coordinator of the league of helpers and headpatters when I was bed bound. 

Thank you Qug :) 

(Qug's mum got well after 10 years of fatigue and now enjoys a life full of singing in choirs and snorkelling.)

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This is my mum. She likes gardening, knitting things for her grandchildren, orienteering and teaching orienteering to school kids. 

Mum brings me home made chicken soup, low-carb muffins and many other miscellaneous things from the outside world like brocolli and avocados. She does my laundry for me, she took away all the grotty, greasy tea towels in our house and made them properly clean again, and she bought me new underpants and threw out my old ones with out asking, because she is a mum. She changes my bedsheets, and she does my job in my share house far better than I ever did (cleaning the bathrooms). She drives me to the doctor and is all all round good mum. 

Thanks mum :) 

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And thank you all heroes of chronic fatigue, big and small :) 

My top ten possessions, before and during chronic fatigue

I wouldn't describe myself as an overly materially-motivated person, especially not when it comes to new and shiny gadgets, or anything fancy or shiny. However I must admit that several material objects have given me great pleasure to possess, and there are some that have provided great assistance to my life as a fatigue-ee.

Before I had chronic fatigue, my top 10 favourite possessions were:

Now I have chronic fatigue, I am really grateful for:

So hooray for things and stuff, sometimes they make life a whole lot better and easier. 

(And I guess I should mention the ipad that has enabled my new non-active form of entertainment, digital finger painting and blog posting). 

My flavor of chronic fatigue, illustrated

From reading the internet i have learnt that everyone's experience of cfs is unique and special, just like a snowflake. This is because 'chronic fatigue syndrome' isn't actually a real disease. Rather, its the fallback label for when, after a barrage of tests, nobody can figure out why you are stuck in sick and tired mode. 

It could be caused by a multitude of different maladies, as it can manifest in many different shapes and forms, aches and pains, aversions and limitations, but the primary symptom is persistent, debilitating fatigue. For me it has been weirdly comforting to read of others symptoms on the internet - I guess it validates my experience, and makes me feel like I'm not just weird, alone and making this stuff up in my head. So to describe my own experience, here are some metaphors and similes, accompanied with some dodgy finger drawings done on an iPad. 

The first and foremost point is it is not a healthy 'had a big day' tired. Its a sick tired. The tired that you get with the flu. 

Interestingly, I think my first symptom this year was that I rather suddenly became a mega introvert. I felt an painful aversion to interacting with people. I just wanted to hide and protect myself and I could feel really strongly how interacting some people drained my energy. (However my previous episodes of fatigue did not affect my social energy, only physical.)

In my last episode of fatigue,  my first symptom was an aversion to what is usually one of my favourite things: cold water swimming. Being cold nowadays is a very unattractive idea. 

When I'm healthy, exercise gives me energy and endorphins, like the alternator in the car recharges the battery when you drive it. I usually need exercise to feel good physically and mentally. When I have fatigue, exercise just drains out my energy without recharging it. Its like I have a broken alternator. 

Or maybe its like I have a leak in my energy fuel tank that drains out as fast as I fill it. 

Or perhaps the pipe from which 'energy' comes from is blocked and its only dripping through very slowly into the fuel tank. I need to rest for a long time after exertion to fill up again. 

Or I have really cheap, low quality batteries. They indicate they are fully charged, but a few minutes into a gentle walk, they are suddenly empty, I am exhausted and the distance to get home has become very long. 

Sometimes I can be quite wired, as my body relies on adrenaline rather than 'proper' energy to get things done. This can make winding down hard, and sleep unrefreshing. I wake up groggy and sluggish. Luckily this time I have been sleeping well, but last year I got a dose of the 'wired and tired'. 

Brain fog makes thinking feel like pushing your bike uphill with the brakes on. 

Sometimes just standing up from lying down feels like:

Last time I got better in a linear fashion, but during this latest recurrence Ive stumbled upon a lot more falls and setbacks along the way. Its like I've fallen some of the way down a very deep hole. Its a long way up. I don't know how deep the hole is and it is scary to think. The only way out is to feel my way very very carefully, taking very very slow steps. If I rush I may lose my grip, or cause the walls to crumble, and I could tumble and crash even deeper. I'm on a precarious ledge and I'm finding my way by touch. How much I keep trying to climb out, and how much I am patient and wait, is a constant dilemma.

But sometimes when I am waiting there are nice things like butterflies to look at. 

And the truth is, as I can't really see my way around down here, I don't actually know what the terrain is like above or below me. It could get worse. It could also get better. And the internet also tells me that, while there is no silver bullet, 

(I have enjoyed and found inspiration from listening to the collection of audio interviews with cfs recoverees, on Dan Neuffer's website "CFS unravelled".)

Saying No

One of the things I have been forced to do a lot this year is ask for help. 

There are a range of things I ask for help for. At the moment, I need help with some very important things, like going to the shops to buy food. Then there are semi-important things to do, like cleaning out the chicken shed or vacuuming the floor. They can can get by without being done, but I don't really feel good about leaving the chooks living in huge piles of their own poo, and having a clean floor just makes life so much more pleasant. Then there are things that probably aren't that important, but I feel a societal pressure to do, like keeping the lawn vaguely under control. And things I just want to get done, such as planting more flowers around the frogpond, because it would look nice and make me happier. 

Figuring out the line between where I need to let go of control, and where to ask people for help can be hard. Food is obvious, the others more ambiguous. 

A lot of people are really easy to ask. They will bend over backwards to help, but sometimes at their own expense. 

Sometimes people agree to help, but only grudgingly, without pleasure. Sometimes people don't reply to my messages. And other times people give very long winded excuses and exhausting apologies as to why they can't help, and I need to spend a lot of energy reassuring them that i's okay, don't feel bad, I understand, etc. etc. 

Being the asker can become a very exhausting occupation filled with self doubt. I don't want to take advantage of and overwhelm the overly-generous people. Yet receiving a grudging yes or a really long winded apology, immediately sends me down a pit of worry and regret. "Maybe I shouldn't have asked, maybe I'm being too presumptuous, trying to control things too much, asking too much. Maybe I didn't phrase the request very well, maybe they don't understand how sick I actually am..." 

I thought that asking for help might be a whole lot easier if everybody was better at, and felt okay about saying no. Saying no, without feeling guilty, and with only a simple apology and a simple excuse, if at all. 

Even if we didn't understand why, we could all trust that our family and friends, had their reasons to say no and accept them. 

Anyway, Millie, the asking for help expert, drew a cartoon about it for me. 

Making friends with lonely and welcoming boring as my interesting companion

Making friends with 'lonely' and welcoming 'boring' as my interesting companion.

I haven't written much lately. Maybe because, truth be told, a lot of the fatigued life can be just plain, well, boring. What is there to say about being housebound for the past 2 months, not doing very much and mostly keeping myself company?

In the mornings I wake up and faff around on the internet for far too long. I could get out of bed, but I need to rest, right? Then I go outside and sit in the paddock and watch the wind swirl mesmerizing patterns through the long grass and do some gentle exercises in the bush. I've been learning qigong on YouTube and I think its helping. And my backyard plant species list is up to 34. About midday I make a very vegetabley breakfast and then I have a rest. I lie in bed and read kids books. I stress about small things in my share-house, like who and how do i ask for things I can't do right now. I faff about on the internet even more, looking for distractions. I do small things around the house. I lie on the floor and fall alseep listening to audio meditations. I microwave my dinner and faff on the internet some more.

Im hoping that being patient with my energy expenditure now will help me recover in the long term. And there have been some improvements. This last week I've been able to walk about 200m up the road slowly, play piano and weed the garden a bit, and talk to my housemates some more. But there are no leaps and bounds here. Just very careful edging along, with some better days and worse days. I'm acutely aware of the precarious cliff edge I'm walking on. If i cross my energy boundaries I feel sick, and also teeter on the edge of the fatiguey pit of doom, which I've fallen in too many times already.

The boredom or loneliness cant really be cured by having visitors over for a cup of tea, or by doing things, because my energy limitations are such that I just can't. There was a lovely dinner party at my house the other day, but I took refuge outside on my own, as multi person gatherings bombard me with too much sensory input for my fragile system. I'm often exhausted just from day to day interactions of sharehouse living, sharing space, soundscapes and negotiating chores. Im often not very good company, especially for my housemates who see me at my gloomiest, and when I'm operating in a stressed-out edge zone. Cranky and grumpy, only forced smiles, struggling to cope with being upright, asking them to turn the music down or stop their incessant cheerful whistling.

But nothing is terrible. Some things are quite lovely, like watching the grass in the paddock. But there are no real moments of really feeling alive. I laugh much more rarely. Internetting is an addictive distraction. Its okay, but it's not quite 'living' really. Not like swimming in lakes, riding up hills and laughing with friends. Being Ok is a lot better than terrible i suppose. Its just a bit 'meh'.

Lonely and bored. I know they are just negative responses to aloneness and lack of variety, which are not automatically bad things on their own. Many people actually crave these states. And it is not as if they are new feelings. In fact, I've known them for most of my life. Usually they are great motivators to go out and do new things and see people. But at the moment I can't run away from them. Exercise, my old feel-good escape is on the other side of the fence of the cfs fence, as are the many incidental social interactions of the non-energy-limited human. I can get stuck in my own head, worked up over small things, without daily exposure to the bigger picture.

I recently got caught up in negatively spiraling aversion to the aloneness and same-sameness. Apparently people who are easily bored are more prone to depression, which I haven't experienced so far. However with thoughts like "what is even the point of a 'meh' life and 'how long do I have to endure this?', it's probably the closest I've come to understanding it. And the simple fact of being alone can become "I'll just get lonelier and lonelier. My life is boring and I find social interactions so hard, eventually I'll loose all my friends. I'll never find a life companion, I'll never have kids, I'll die alone, a lonely old spinster who no one who cares about".

Loneliness and boredom. My regular companions and yet I realized how often I fight them. I say rude things to them, like, "rack off, you stupid feelings, you're not allowed to be here. How could you possibly be bored when you are such a miracle of existence and there are clouds and ants to watch and wind in the grass? Only boring people get bored. Plus you're not allowed to feel anything like sorry for yourself as so many people are worse off than you. You'd better Shut up because nobody likes a complainer, or a needy person."

I fight them because I'm scared of them.

They respond by tightening their grip.

A while back I fought an early morning battle with loneliness where I eventually became so tired that I gave in. And I allowed it to be real. I talked to it even. Hello loneliness. Alright alright. I see you. Come in. What do you need?

And that's when it softened and stopped twisting itself up into tighter knots in my guts. The story loosened its grip and unraveled a little.

It turns out that part of me that was sad just really wanted to be seen and acknowledged.

And so I tried that trick with boredom yesterday.. hello boredom. Hello fear of boredom. I see you. You're allowed to be real. Come in. Welcome. Tell me about yourself. What do you need?

And suddenly there was a loosening of the story that doing nothing is bad, and that time needs to be filled with anything other than existing and breathing....

Yeah it seems weird. To, in your imagination, invite the nebulous concepts of boredom, loneliness and other fears in, so you can look at them more clearly. But. Try it, I'd say. Its worth a go. Stop fighting. Perhaps the fears are not so bad once you shine a light on them and allow them to be real.