Millions Missing 2021

Content warning: Talk of bedridden sick people. Chronic illness. Mental Health.

This is where I spend a lot of my day resting.

Image description: Megan sits in their grey recliner. They are wearing a grey top, they have dark hair and are wearing rainbow glasses frames. Their face is partially covered as they are holding a grey cat up on their chest. They have a colourful crochet blanket on top of them and their legs outstretched underneath. You can see another black and white cat lying o them. Next to them is a trolley with some things on it. In the background is curtains and a shelf.

‘You only have to move a few things around and then you’ll be right’.

‘Sometimes you just need to push through’.

‘I know what that’s like, I’ve had it before’.

‘You know it’s hereditary, and it’s all about diet, I know all about it, my mum had it’.

‘Are you ready to go back to work yet?’

‘What you need to do is….’

As I contemplate the last three years since I was officially diagnosed with CFS/ME I contemplate the ridiculous, patronising things people have said to me.  My head is spinning now, I think it’s the LDN (Low Dose Naltrexone) medication that I am trying to see if it helps this illness, I have which has an unhelpful name.  Chronic Fatigue Syndrome or Myalgic Encephomyalitis. Chronic fatigue is a symptom, something you can get from very many things, it is not the same as Chronic Fatigue Syndrome which has a bone crushing exhaustion, likened at times to jet lag.  Thing is, it’s not simply about fatigue.  It’s about a whole range of symptoms that make up the illness and it’s diagnosed AFTER there is no known reason for why you are so ‘exhausted’ (honestly this word does not cut it as a description).  However, the lead marker of the illness is Post Exertion Malaise (PEM), which is basically a delayed exhaustion or crash, this happens after you have extended or gone beyond your energy envelope.  Other symptoms include Flu like symptoms; Sensory issues; Brain fog; Bad sleep; Gut problems and others that I can’t think of right now.

Thinking back, I’ve been sick for years and for about the last 13 years there was a slow unwinding of my health with one problem after another.  At the beginning of 2018 I hit the wall and never got back up.  I go to bed exhausted (again, not an adequate word) and I wake up feeling worse than what I did before I went to bed.  I have ongoing gut problems, and have a ridiculous amount of food intolerances which, if I eat the wrong thing range from a food poisoning type of response. Vomiting your guts up hours after eating until you feel like you have no gut lining left, through to other very nasty unmentionable things that happen to your gut when you can’t digest so many foods.   I constantly monitor my diet, and because of another health issue I can’t do anything horizontal for two hours after eating (my food needs to be out of my stomach), this includes bending over.  So basically, I must eat and sit and digest.  This is a pain in the arse, it means I must structure my whole day around eating and when I eat.

I go into a shopping mall and the lights hit me and suck up all my energy, the sounds blast into my ears and I can feel my energy drain as my heartbeat rises.  I have no capacity to block this naturally, so sunglasses inside and sound cancelling ear buds are the go. This is on the very rare occasion I might go into a shopping mall.   I hate shopping malls, horrible places. 

Last weekend I left the house on a rare outing.  I went to Bunnings with my partner.  I walked around and found the item I was after, then we left and looked in a couple of other shops on the way home, by the end of it I was hurting all over. I often use a walker, so I have a portable seat and it helps me when I get wobbly on my legs, but I didn’t have it that day.  The next day I was beyond doing anything much and that was basically it for a week in terms of going anywhere or leaving the house.

I mostly manage my health by pacing.  This involves wearing a fit bit and keeping my heartbeat below a particular number. 102.  It’s based on age.  It can go up to 120 just with a gentle walk, or if I lift something up and I’m not talking about anything a regular person would find heavy, I’m talking about a vacuum cleaner. A couple of hours above 102 and I can expect a big crash.  It goes above 102 most of the time when I leave the house.  So, I don’t.

I can do little housework.  I simply can’t. It’s too strenuous and I’ve found my hands don’t work anymore.  I can’t undo packets of things, simple things like packets of chips. Too hard, can’t do it. To help with the domestics in my house, I do the grocery shopping, online and the household budgeting and bill paying.  I cook the dinner, but we had to buy special light pans so I could lift them and even now I have problems.  I can do the cooking okay, but it can be hard.  Sometimes I put a stool in the kitchen so I can sit down with it, and I often use our slow cooker as it means I don’t have to stand around cooking. Standing is more energy draining than a slow walk.

People have no idea about energy until they get CFS or something similar.  EVERYTHING uses energy.  Including thinking and brain function.  Just trying to concentrate for a period also takes energy, about as much as physical exercise.  Fifteen minutes of concentrating is the same as 15 minutes walking, both are hard. Then there’s the brain fog.  It’s like words and ideas are swishing around in there somewhere but you just can’t retrieve them. It means you can’t think quickly, and you make lots of mistakes, or you seem to because you just can’t retrieve that information.  I recently bought some yarn online.  I thought I was buying 5 single balls, but then it turned out I bought 5 packets of five balls.  Lucky I’ll be able to use the wool somehow.

I am fortunate to have a lovely, supportive partner, who not only supports me emotionally, but she also supports me financially.  Without her I’d be fucked.  From what I see from government supports (in Canberra, Australia), I would find it difficult to get any kind of pension, this is because there is so little known about ME/CFS or Fibromyalgia (which I also probably have) and because they are chronic illnesses, who knows, I might get better next week (said with sarcasm, it’s highly unlikely).  I can’t work. I don’t have the physical or mental capacity.

I spend most of my time making art of some kind.  Sitting down in my recliner.  I can no longer sit at my sewing machine for a long time, it takes too much energy.  Most days consist of me getting up at around 10-30am.  By the time I eat breakfast and try and wake up it’s about 1pm.  I’m really not functional in the mornings. Sometimes I do ‘something’ between about 1 and 3 that takes energy, including mental energy and then by 3pm I’m usually resting again in my recliner.  I watch a lot of Netflix and I’m always crocheting or stitching.  I am grateful I can do these things.  I cook dinner, and then I’m sitting in bed by 9-30pm and asleep a bit after that.  I also use a CPAP machine, which is amazing, I can breathe now I have it. I wake up about 4 times a night and then wakeup again the next day at 10-30am.  Feeling crap. I never wake up feeling refreshed, ever. Rinse and repeat.

Every year in May there is a week of activism around CFS/ME, and the slogan is ‘Millions Missing’.  Missing because we go missing from our daily lives.  We don’t die. We disappear.  We go missing from all the activities we would have been doing. There is only 5% chance of full recovery from this illness and there is much stigma and a lot of outdated medical information.  ‘They’ used to say it was in our heads and prescribe graded exercise therapy and CBT.  Exercise beyond what we can do has proven to cause more damage than good with some people never recovering after they have pushed themselves beyond what they should.  It is not in our heads, it some sort of biological illness and there are people who have been living with this for decades.  

At its worst people are bedbound.  They lie in darkened rooms with eye masks and ear protection, because the tiniest bit of light and noise hurts.  They are thin and slowly wasting away because it takes a lot of energy for them to digest their food.  They have difficulty even sitting up.  They are truly forgotten by the rest of the world. Imagine trying to get out to go to a doctor if you can’t even sit up in bed without it making you sick for weeks.  At best, people can go to work, but always must watch energy levels.  I’m somewhere in the middle. I can only leave the house once or twice a week at the most and these days it’s usually to do things I have to do, like medical appointments.  If you see me out. I’m still sick. I’m not better, I’m out despite being sick. I look fine. Great even. But I feel like shit and it’s likely my heart is racing and I’m physically struggling.  So, if I don’t get up from where I’m sitting it’s because it’s too hard. If I talk at you, it’s because I haven’t seen a friend in weeks, months maybe.  If I seem vague, it’s because I’m struggling.  If I get facts wrong, it’s because I can’t remember, I have brain fog.

I’VE GONE MISSING FROM MY FAMILY because I just can’t see them enough and talking on the phone can be as hard as an in person visit.  Easier than leaving the house, but still draining because it all takes energy. My parents are ageing, and I am acutely aware of this. All their friends are dying or have died, and they are more reliant on me than they ever have been. I don’t have the energy to see my brother very often.

I’VE GONE MISSING FROM FRIENDS for quite a while now. People stopped inviting me to things because I never went, and clearly, they saw it as lack of interest.  I got a real kick in the guts one time when all the people in my burlesque group were talking about a party they had been to the night before for one of us.  I wasn’t invited. (That was years ago.) Most friends don’t have the patience to hang in there with me. It takes months for me to catch up.  So, I’m slowly letting people fade away. I just can’t do it. I can’t ‘reach out’, because it takes so much energy.  I listened to Toni Bernhardt’s book ‘How to be sick’, best book ever. She has CFS.  She talks about friends and how you will lose them unless they are very willing to hang in there with you.  I’ve tried telling people how to stay in touch with me and that the odd ‘how are you, thinking of you’ message on Facebook or email means the world…but few people do it.   It means the world to me when I get these little interactions, because I don’t see anyone other than my partner (and many of us don’t have that). I don’t see work colleagues; I don’t see random people in the supermarket. I don’t see people when I’m driving somewhere or on the bus.  Think endless Covid restriction and social isolation.  That is my life.

I’VE GONE MISSING FROM WORK I can’t work in paid employment. I’ve been trying to sell my work as an artist but that has not been fruitful.  My paid work was an area where I always felt confident, it was an important part of my identity.  This has ended and now I can’t do this work, even in a voluntary capacity because it would require me to do too much reading and I can’t read more than a couple of pages before the page starts swimming in front of me.  Audio books are good, I can listen to them for about 15 minutes before it gets too hard.  I still have lots of knowledge about lots of things, but I’ve been treated like I’m clueless in recent times and been replaced by younger people (ageism, a whole other area of discrimination).  My 20-year career in the community sector as an educator, advocate, teacher is now feeling meaningless. There is no where for me to express my knowledge.  It’s a catch 22, I can’t work, but I can’t volunteer either because I can’t think clearly enough or keep up with reading. I can’t think quickly in meetings to be able to contribute at the time, even if it is a zoom meeting. It takes longer.  A job interview a few months ago proved I can’t work. It was for two grades lower than what I had been working at when was restructured out of my last employment and I struggled to answer the interview questions. I didn’t get the job. It was both a relief and demoralising and a massive blow to my confidence.

I’VE GONE MISSING FROM MY QUEER COMMUNITIES … I came out late in life, was very involved in my queer communities, but these days I can barely get to any events and I have little interaction with my queer friends.  It’s like you don’t matter once you can’t get to events and be part of the ‘scene’ and given that I once gave an awful lot to my communities it feels like people don’t care when you can no longer give to them. I am not around people who help me validate my queer identities often.  It’s like being forced back into the closet.  I have found some Queer Crip friends online, but we all struggle and making contact is hit and miss. When it happens its gold.

I think many of us live in a constant state of grief over the things we have had to give up, or the things we will never do.  It seems that we just get used to one thing we feel loss over and are hit with a new one. It’s very hard emotionally.

I AM MISSING FROM THE STAGE  I have been a performer, drag king and burlesque for many years.  However, for half that time I was gradually getting sicker.  This meant I couldn’t go to social events or shows, and I missed out on doing a of workshops and things.  This meant that gradually I was left behind.  Performing is very important to me. It’s key to my identity expression.  I still try to perform sometimes now, however most producers are clueless when it comes to disability, and spaces and people are hard to negotiate.  We usually must educate show producers, making it even harder for us.  Also, for me at least, it can involve revealing some very personal things, about body function and mental health and this is hard if you are not close to the producer.  I do my best and occasionally perform.  It’s always a joy when I manage, however I do miss out on the other half of performing which is being able to be sociable with the rest of the cast.  I’m usually battling with my body needs; I can’t be the social butterfly.  It is always good to be around queer affirming people though.

I MISS BEING ABLE TO PARTICPATE AS AN ARTIST.  I simply can’t leave the house much, so I miss going to art exhibitions, even though they are one of the most accessible things I can do.  Quiet space and often darkened spaces make them easier to navigate than other spaces. I also miss opportunities as an artist.  I can’t go to workshops, or take up opportunities to participate in things, because, if they aren’t held at bad times of the day, the energy involved is too big.

Basically, I can do about 10% of what I did before I hit the wall and became too sick to go out much.  I don’t ‘push through’ which is the worst thing I could possibly do, as this could make me seriously unwell, with no recovery.  I’ve learnt from other people with ME/CFS.  Our lives become very small, and it really comes down to enjoying little things (which everyone could do really), like watching the trees outside the window change with the seasons, having pet cuddles and being able to quietly crochet each day.

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