Tethered

I’m still recovering from a massive crash I had over the past month, which left me out of the office for weeks. I’m back at work, but still getting extra tired extra easily, and sleeping a lot. But better than I was in the worst of it.

I think that the thing I found hardest with this crash is that I got so physically exhausted that my mental health felt like it was at breaking point as well. I was struggling to just scrape by, yet it felt like people wanted more from me when I had nothing to give. And I wanted more from myself too – I always do. I got to the point where I was so exhausted that I would try to do things, but just end up in tears because I couldn’t function. It was one of the times I have felt most fragile and vulnerable in this whole sorry saga. And it exacerbated the feeling of going stir-crazy, being in bed day after day – I miss travel and adventure, but my body (and my credit card balance) seem determined for me not to have it, even in the most small-scale sense.

Thankfully after taking the time off I am doing better with my coping, but a big crash like that also leaves a big dent in my confidence – it makes it harder for me to imagine things improving any time soon, and more scared that I could make myself that ill again too easily.

At times like these I also feel like I’m in a state of shock. How did this happen? How can something that won’t show on tests be hurting me so hard?  How did I go from wandering around the globe and being amazed at my own ability to stumble upon interesting opportunities to being stuck at home feeling like life is often sticking up its middle finger at me?

I found myself searching on Google Maps the other night, just looking up places where I used to live and work. It was a compulsion more than a rational choice to be there, searching my old sharehouses, offices in the forest on the edge of Jakarta’s urban sprawl or hidden away in shopping malls, apartment blocks towering above flyovers, the grainy outline of roofs in Dili that I lived and worked underneath. It was like I felt if I looked hard enough at the footpaths I walked to catch the bus in DC, if I searched for plastic chairs I’d lounged in half sunk in Dili’s coastal sand, some kind of answer might appear.

Of course, it answered nothing. It made me reminisce. But mostly it made me feel tethered. A reminder that my adult life at present has two main chapters – ‘before I was sick’ and ‘after I got sick’.

As Jen Brea, who also has ME/CFS and has produced a documentary on it (and recently gave this fab TED talk) recently tweeted:

The highs and the crushing lows

I haven’t written on here for ages. Christmas was low key and relaxed – it was good to spend time with my family, read some books and dress the dogs in costumes. But I also really struggled with feeling depressed around new year – another new year’s eve at home by myself not doing anything, another new year being ill without any progress, nothing fun planned for the year ahead because I’m broke.

Dog photography = highly challenging!

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Once I got back to work though it was almost immediately insanely busy, which is always a good way to avoid ruminating on things. We hold our biggest conference of the year in mid-February, and every year it gets bigger, and my involvement becomes more and more. I’ve been working on weekends, working a lot, but with a pile of work for ‘after the conference’ that just keeps getting bigger as well.

The conference itself went well as usual, and I even presented this year and won in our ‘three minute aid pitch’ competition, which was fun. But it’s so hard. I’m always trying to not physically overexert, then wondering if people are looking at me like I am just fat and lazy for doing things like using the lift instead of running up and down stairs a hundred times. I did something to my back so was in heaps of pain the whole time. And I was just physically exhausted. It felt like my body was burning. I would have to sneak in lie-downs in seminar rooms, sometimes falling asleep and getting marks on my face from the tough low-pile industrial carpet favoured by offices and universities everywhere. I would straighten my hair and try to look nice, but look like a frazzled trainwreck approximately 10 minutes in to the day because of running around to try to fix some crisis or another. The whole time I was also trying to work – to get media, to set things up, to run social media, to answer emails, to answer questions, to try to help people, to coordinate volunteers, to be chirpy and friendly, to ‘network’, to take photos, to make everyone feel welcome. I barely saw a handful of presentations at the actual conference. In the days leading up, I was trying to lead by example while doing crappy conference prep things like making lanyards and folders, repetitive tasks which left me in pain, because others seemed cranky about having to help. All of these things take a lot of energy. It’s my third conference trying to cover up my chronic fatigue, and it becomes harder and harder every time.

Have almost survived our annual conference but look at those dark circles! Napping on a seminar room floor! #mecfs

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By the end, I was dead and could barely walk. My sister had come to help for the conference, which I was so grateful for, and was staying for the weekend, but was thankfully as always understanding of my energy-crashing and it was nice to have her staying with me. We managed to do brunch, and go to the multicultural festival for a short while, but by the time I got back to work on Monday I was still exhausted and sick.

Everyone in our family LOVES FOOD.

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So happy to not be in the office this weekend hahaha.

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I kept pushing because I have a ton of work to do, but crashed big time today – perhaps not helped by getting a massage yesterday. It helped my aching back a huge deal, but seemed to push me over the big-time-fatigue-crash ledge.

So today I’ve been in bed all day, barely able to get out, and feeling miserable. When your body throws its hands up and says ‘I can’t do this’, it’s hard for your brain not to follow suit. And it’s hard not to worry and ruminate. If I can’t manage this, how can I manage other things? How can I recover from this properly when I have so many things to do and people chasing me down for things at work and outside work? How can I take a proper break when I am so broke and in debt and now my car is on its last legs and needs to be replaced? How will I ever achieve any of the things I want, in my career and personal life, when a two-day conference leaves me crippled? How will I ever be a proper grown-ass independent competent adult woman when this illness keeps kicking me in the balls, over and over again, no matter how hard I try?

I’m just really starting to wonder if it is worth pushing on things, when the come-down is so hard. But then what do I do? Be mediocre, lonely and bored? Go bankrupt?

Just so over it and wishing I could have my pre-CFS energy levels back. At the moment all these doctors are pushing me about my weight again and I’m feeling under all this pressure on that as well and feeling judged, but my biggest regret is the diet and exercise regime that caused me to get sick in the first place. Being several clothes sizes smaller for six months was not worth this. I just want my life and energy back.

Two years and then some

At the beginning of November, my two year mark of living with ME/CFS ticked over. At the time, I considered writing something down (similar to the piece I wrote at the one-year mark). Some sort of profound musing on what two years of chronic illness has taught me.

But you know what? I was too tired. That week, I was really exhausted, bloated and ill. The expensive integrative GP had prescribed me some kind of pancreatic enzyme that ended up making me progressively sicker and more tired for the two weeks I tried them, and then caused gut problems for more than a month afterwards.

And then Donald Trump won the US election which was just so anger-making.

So I just didn’t write anything.

Me, two years in with #mecfs this week. It’s still hard. I still struggle with the missing-outs, the bouts of extended loneliness and isolation when I’m too sick to do things. The boredom of being too tired to be entertained while just staring at the stucco ceiling in my bedroom. I still have days where I cry about it or feel mad. But I’m also proud of some of the things I have managed to do despite it. Sometimes I feel like I’m doing a great job of covering it up, sometimes I have to lift the lid and ask for help, sometimes it is etched in the dark circles under my eyes or the way I walk and isn’t an #invisibleillness at all. I wish it hadn’t made me gain so much weight, because I feel gross and it makes it harder to be taken seriously by some doctors, and that I had enough energy to be more social and have hobbies outside of work. Two years in though and I’m really starting to wonder if it is going to go anywhere – if I hit year 3, or year 4, it might be time to start planning a whole life with this. The support of my friends and colleagues, and especially my family, has been a life raft during those times when I’m really struggling. So thank you xxx #cfs #chronicillness #spoonies

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Then I went through a bad patch on the ‘dealing with it’ front – was feeling anxious some days, not sleeping well with stressful dreams, and feeling really down on others, so down I just wanted to sink into the ground and disappear. So when that was happening, I couldn’t summon the strength to concentrate or string sentences together. So I just didn’t write anything.

Now, because things have been a bit more social in the past couple of weeks as the year winds down, I haven’t felt like writing either even though I am feeling less blue (though still plagued by stressy nightmares), because I’ve been busy, and then too tired from being busy.

Today though, I am writing because I am completely physically knackered after two Xmas celebrations two days in a row (which were both very nice and enjoyable, but standing a lot and talking a lot and preparing food and so on exhausts me). Then today I have been trying to clear out my cupboard of clothes that don’t fit anymore thanks to CFS-related weight gain, which is physically and emotionally tiring. I’ve only gotten halfway through but now my back, shoulders and arms are hurting a lot, so I’ve had to stop. So I am writing, though my fingers are already starting to ache a bit from typing. But I’m looking around wanting to finish the closet clean out, wanting to start packing to go away for Xmas and to tidy instead.

So I guess the profound realisation after two years is: you can only do what you can do. There’s so often curveballs that derail the best intentions. But on most days (if not every day) I still always want to do more, and that is often one of the hardest parts. This illness is definitely never ever one that is about a lack of will or desire.

Some of the nice things

I’m in my hometown at the moment on a break to attend a wedding on the weekend that I’m very much looking forward to (though I still haven’t exactly decided what to wear…). I’ve been Instagramming the family dogs a lot, much to the boredom perhaps of my followers and the dogs themselves, who really don’t understand why I keep calling their names and waving a phone at them.

Excuse me, you appear to be cooking food and are not dropping any on the floor. #albury #malteseshitzu #winston #pogo

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But going through my Instagram is a great way to remind myself of some of the lovely things that have happened in the past few months, even though winter is always tough, and there’s been some particularly terrible things this year, like the sudden passing of a dear friend’s wonderful mother.

A lot of my Instagram is food-related, but grabbing breakfast or a coffee and reading a book is a real small pleasure that helps me get through feeling unwell. It seems a little indulgent when I am #broke, but it’s really my main indulgence, and I think its worth it.

Just one of those mornings where toast seems too difficult to cook. This is the Eighty Twenty breakfast wrap. #canberrafood

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Instagram is also a reminder of the incredible support I have from friends and family. When I was having a mid-winter rough patch earlier this year and was feeling pretty depressed and disappointed and very ill, some of my friends sent me some lovely things to cheer me up. And they were there for emotional support as always.

And my sister was there for support and fatigue-friendly fun when I travelled to Sydney for appointments.

Sister hangs #thegrounds #groundsgrams

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Another #zumborons shot. @cynical_coffee did an excellent job of picking flavours. #macarons #sydney

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#sydneyharbour #sydney

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My colleagues are also such an important part of my life, and in amongst the big big busyness that always engulfs us, we’ve had some real joy this year with some babies arriving and some nice social gatherings.

Friday hangs with Maeve. Thanks @mrojasrusque for the cuteness loan! #babymaeve

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So as much as my mad social media-ing might sometimes be laughed at, and as much as there might be research showing it contributes to FOMO (fear of missing out), it’s also a great way to remember the happy moments, and helps me feel connected even if I’m stuck in bed or people are far away.

Kicking furiously, getting nowhere

I haven’t really written on here for a while, and it’s because there hasn’t been much to say. Things have just been kind of shitty. I’m always sicker in winter. Everything aches. I’m always exhausted. For several of the past few months I felt like I barely managed a full week of work. I ended up with a severe case of bronchitis that had me out of the office for a week and a half, coughing up my lungs and running such a fever that I was drenched in sweat and disoriented for days. And then there’s just been various disappointments – I’ve tried to chase new opportunities, but since I fell ill (nearly two years ago now), it sometimes feels like things just don’t work out for me anymore. Sometimes I feel like I’m becoming an increasingly dull and uninteresting person, and I just can’t see a way forward. It’s like I’m trying to swim and kicking as hard as I can, but I’m not moving, and I’m just getting tired without making progress.

When your ‘invisible illness’ is not being so invisible. #mecfs #invisibleillness

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But thankfully the weather is getting warmer now, which always helps. Everyone comes out of hibernation and I feel less alone. Muscles ache less, and just being outside is a simple joy that can be easily added to even the most ‘paced’ of schedules. Today was sunny and warm, and I caught up with a friend for brunch and it was all really nice. Two long weekends back to back have also been really good – but a reminder that I’d probably do better if every weekend was a long one.

I’m still trying to find answers for my illness, but its still a tough process with lots of heartache and failed experiments.

A few months back I went to Sydney to see an integrative GP who is apparently a specialist in CFS, and a herbalist who friends fervently recommended (cue more exhaustion, and my parents having to cough up $1000 to pay for it). I’ve been taking the herbs as directed, without improvement. So far the ($160 a month) probiotics regime recommended by the integrative GP hasn’t yielded results either, but it did help when I was taking antibiotics for the bronchitis, stopping the icky stomach sick I usually feel if I have to take them. There’s a lot of evidence emerging about the gut biome and its connection to everything so I’m willing to keep trying with that. I haven’t been a convert to that doctor’s recommendation that I eat stewed apples every day though to reduce gut inflammation – an allegedly ‘scientific’ paper on it, that didn’t even seem to be peer reviewed, was unconvincing, and I just can’t be stuffed to cook them all the time. I also never trust a paper that has a rhetorical question in the title that never gets answered (see Betteridge’s law of headlines)! I’m trying to act on all the non-apple-based advice, but there’s been no magic transformations.

I’ve also been to more specialists, who requested tests that have all come back showing how normal I am, and who have then told me that I should perhaps get half my stomach cut out as living off pureed food for the rest of my life is probably the only way I will ever be able to lose weight, and maybe major surgery like that will fix my CFS because… weight? Oh, and they also dropped a casual reminder that I have approximately three and a half years before my fertility declines, so I’d better think about that too. It’s not that the specialist was cruel about it or anything, they were quite nice, but it’s just that a) I like solid food and don’t want to have surgery and b) I’m hyperaware of what the consequences of this illness dragging on could be on many facets of my life and c) I hate my body with a vengeance, especially at the moment because I have put on weight due to not being able to exercise and various other things connected to the illness.

So on the one hand I feel like I’ve been pelted with apples, on the other I’m feeling stabbed by little ‘evidence-based’ knives. I feel disgusting and hate looking in the mirror, but I’m still pushing on, even though I’m starting to wonder if there’s much point in all these appointments.

So that’s basically been my winter. I’m so glad it is getting warmer.