For the most part, I accept that I don’t know when I’ll be well again. I’m well some days, and on others I’m plagued with all sorts of aches, pains and my almost constant companion – exhaustion. My energy is like the Elvis announcement; he’s left the building. It’s there or it’s not. I can’t force energy to be there, I wake up and I pretty much know, ‘today I can drive’; ‘today I can do some shopping, but I’ll have to be quick’; ‘today I will not be able to deal with any social interactions without stabbing someone in the neck’. I can push myself, however there’s always a price for doing that, so I’m very careful as to which events are worth that effort of the inevitable aftermath. For example Dom’s mum was very unwell and I had a feeling it might be the last time I would see her so I braved the 2.5 hour drive to the central coast and somehow I rallied on only 3 hours sleep, but I was knocked senseless for the next three days. Clearly, I have some small amount of reserve, although there are days when I feel I wouldn’t have the energy to get out of the house even if it was burning down around me. The best way to explain it is that I can wake up feeling like I’ve just spent all day moving house; a house with 5 sets of stairs.
I went back to my doctor and he told me my heart monitor test was ‘normal’. He said my blood tests were ‘normal’. I hate that word. Normal. Pff. I sat in front of him in abject misery, with tears in my eyes. I said to him, “What is wrong with me??” he replied, “Sleep apnoea? Let’s get you a sleep apnoea test. Maybe chronic fatigue. I’m not sure yet. Let’s rule out the sleep.” He waved my results in the air and smiling widely as he announced in his strong Egyptian accent, “You look good on paper!” and he was correct. I also looked good on my CV and often I look good in person. I felt like I was a charlatan. False advertising. Lazy. I was tired of everyone saying how good I looked. I was tired of health being my only topic of conversation. I was tired of not being able to say, ‘Thanks! I’m feeling heaps better now’. I was tired of never being able to make plans. Some days, I’d wake up feeling so wasted my actual thought is, “How am I going to hold my head up all day, my literal ‘head’? It feels like a medicine ball.” Other days I wake up with enough energy to have an almost ‘normal’ looking day and live up to all the results of my ‘normal’ tests (and then feel guilty over feeling well). You would think these days are filled with joy. Well, they’re not. I am grateful, but I’m wary. I’ve learned to not get my hopes up. I’ve learned a good day can lead to a really bad crash if I do too much and a crash can last up to two weeks. I’ve learned that a good day is a random event. Then I go and ruin the good day by analysing it to death, just like I do with a really bad one. What did I do leading up? What didn’t I do?? What did I eat, drink, think, feel, touch, and smell??? Was it too much iodine? Not enough? Did I drink too much coconut water and poison myself with potassium overdose?? I will analyse it to death, I CAN’T help it and I spoil a good day and a bad day is made much worse. How can I feel SO good and then feel SO bad. My brain seems ok, but my body is not able to cooperate and this causes a form of depression on those darker days.
This picture is from my mood diary, and as you can see I had an unusually good week with four great days, and the following week an insanely good day, and then two weeks of bed bound misery. This is typical of what happens when I over extend myself. It’s like getting a monthly salary and spending it all in the first week. I’m now finding myself on an energy budget. So even if I have the energy, I must learn that I cannot spend it all at once, which is hard for me since I am the type of person who tends to work in bursts of activity.
People don’t seem to ask after me anymore it’s just assumed (and rightly so) that I won’t be coming to things. I feel like a bad friend, even though it’s out of my control. I rallied myself the other day to go to a family event, but I started to get unwell and we had to leave early. I’m no fun to take anywhere. I don’t like to be too far from home still, and I still struggle from 5pm onwards. I inwardly cheer when plans are cancelled.
I often think if anyone saw me standing in the line at Coles, they would not know the dialogue in my head, ‘can I keep standing? I think I’m going to pass out? How many more minutes? Should I call Bec to come get me?’ I look around with fascination at the people all around me, wondering how many are feeling as wretched as me. I envy the ease of the checkout girl able to stand the whole shift casually chatting to people as she packs the bags. I feel so freaking useless and then on a good day, I cannot help myself when I get some energy I go mad with it and I know I KNOW I should conserve it, but I just seem incapable when the illusion of health is SO real.. and then I crash. At the moment I’ll take the crash if I can have a day of being ‘a reaaaal girl’. If Elvis is in the building then he’s in the building. Why pretend he’s not.
The gift of semi-wellness
You know when you get the flu and you call in sick to work? Well you know that day that you are semi-recovered? You don’t have the energy to work and so feel justified to be off sick but you are still able to actually enjoy doing a few things at home? Well that’s kind of where I’m at (on a good day), but with a much larger window.
My dad used to say, to be happy in life, and think back to what you loved to do as a child. For him it was cars. As a toddler his first word was ‘car’ and he worked with cars in one way or another for his whole life, and I can honestly say he is a deeply contented man who loves what he does. You really can’t say that about most people. He subscribes to the notion, ‘do what you love and the money will follow’.
I was always good at art. I loved to draw and create things. I eventually became a graphic designer but after a period of staying at home when I had children I got slow and no one wanted to hire me after I’d been out of the game for 10 years. I continued to do little bits and pieces free for good causes, but I kind of lost interest since it took up a lot of time and I couldn’t make much money from it.
My dad would always say, “What are you doing with all that talent?” I would reply, “I can’t make money out of it. I have lots of other interests.” He would insist that if it was what I loved, there would be a way to make a living from it and I disagreed with him on that. ‘Lots of people can draw,’ I’d say, ‘all the stock art has made illustrators like me obsolete, graphic design has become mechanical and boring.’
Dad said, “What got you going as a kid?? What really got you going?” and it’s only recently I realised I hadn’t gone far back enough. I’d gone to my teen years of wanting to be a graphic designer, but further back, much further back to when I was in year 1, I wrote a book called “The Lost Hill” it was a silly little story about a hill that had no friends and different animals and creatures came along and in the end the hill had many friends. I wrote it and drew all the pictures and the teacher went crazy about it. Really crazy about my talent and how clever I was, she gave me full marks and my book got added to the school library and it was literally the proudest moment of my life. I have always had a fascination with children’s books. With illustrations and funnily enough with stickers, business cards and greeting cards… but books, kids’ books really float my boat. I’d had a few tries over the years writing and illustrating and looking for publishers but I gave up too easily, mainly due to my lack of confidence in myself. When I had kids my excuse was having no time, and to some degree that was valid! But I know I could have done a little bit.
It’s as though at this point of my life, the universe is saying, no excuses now. You have the confidence. You have the time. You have energy on a good day. You have the means (self-publishing is so easy now) and so, I had begun the journey of being true to my inner calling, regardless of the fear. The universe was providing in such a bizarre way. It’s now or never. I’m 45. Last week I had pain in my thumb joint and you know what I thought? If that’s arthritis, and it may well be, then I don’t have forever. None of us do. If I don’t start being true to myself now, then I’ll look back in 20 years and hate myself. They say the best time to plant a tree is 100 years ago. The second best time is now.
So, I made a decision to use this semi-wellness window in my life to be creative, instead of what I’m currently doing, which is researching sickness. If someone asks me what I do, instead of saying, “I’m recovering from health issues”, I will now say, “I’m working on writing a children’s book”.
My acupuncturist mentioned chronic fatigue 6 months prior to my psychologist and Doctor suggesting it. He’s an exceptionally intuitive man, and I actually think he knew I was well on my way, however, that was something I didn’t want to hear so I ignored it.
I was in the first stage of grief, ‘denial’. I was able sit in the comfort of denial for another few months until my psychologist said to me, “Leonie I’d like you to consider seeing a GP who specialises in Chronic Fatigue and it would be good if you could get hold of the book by journalist Leigh Hatcher called “I’m not crazy, I’m just a little unwell”. She told me he had spoken at her church and there was a lot of misunderstanding around what Chronic Fatigue actually is. My understanding was this, my cousin had it and she couldn’t physically get out of bed for about 8 years. So I can’t have it. Full stop. Additionally I didn’t want to get it either it sounded bloody awful.
I slowly started to open myself up to a different view of what it meant to have chronic fatigue. I bought the book and sure enough I could relate very closely to a lot of things in it. Leigh Hatcher made sure to stress that everyone’s experience of CFS was different, but there were many similarities.
Chronic fatigue, cellular fatigue, ME, post viral fatigue, whatever label you want to give it, is a nebulous label for a monster with many heads. The name doesn’t do it justice; it should be more dramatic, like Cell Devastation Disorder or Mitochondrial Obliteration Syndrome. My Mitachondria mighta -‘gone’dria ..Sheesh, why not give it a name it deserves. Some other conditions, with only marginally less suffering have much more imaginative names, like pernicious Anaemia, or being morbidly obese, or having a myocardial infarction’ but Chronic Fatigue? how insulting; why not just call it ‘Fairly tired Syndrome’ and minimise it some more.
It’s HORRENDOUS. It’s not just about tiredness. It’s a total failure of the body to be able to produce energy and so much more. It’s feeling like you permanently have the flu, it’s aching and feeling toxic all over from head to toe, it’s getting dizzy out of nowhere, it’s never being able to make plans because you don’t know whether you might be having a good day or not. It’s headaches, it’s anxiety attacks, nerve pain, depression, it’s hanging on to your sanity for dear life, it’s eating hourly, it’s crashing and reeling without warning, it’s feeling like you might die at any moment and its feeling like you might black out from exhaustion half an hour after you wake from an 8 hour sleep, if you were lucky enough to be able to sleep. It’s feeling like your head is as heavy as a medicine ball perched precariously on top of your neck. It’s schlepping your body around the house like a carcass that you have no control over, and it’s living in fear that something else is quietly going wrong in your body and waiting for it to manifest itself in much the same way that you got sick in the first place.
It robs you of your life and your confidence, comparable to a domestic violence relationship, sometimes it’s real nice to you and other times it beats you down for weeks at a time. There is no rhyme or reason for the bad days and you become deeply suspicious of the good days because you are intimate with the pattern.
It’s interesting to note the idioms people use when they’re in distress. The term ‘tear your hair out’ is an interesting one. I notice when I hit a major low and I’m in a really toxic state, I grab my hair in two great handfuls and pull on it, it feels good, to stretch it away from my scalp. I don’t believe the saying came from people actually pulling their hair out, but I do believe our scalp, face, jaw, neck and shoulders carry an awful lot of our stress. Think of other sayings such as, ‘carrying the weight of the world on your shoulders’, ‘face ache’ and ‘all choked up’ or to ‘be beside oneself’ is interesting, I’d never really considered it until I became unwell and the act of being in my own dysfunctional body and mind was so painful that I literally wanted to escape and be ‘beside myself’ but I had to make my peace with that, as there’s no escaping oneself unless you find a substance to abuse and when that wears off you are right back where you started..or worse. Wherever you go .. there you are. This all led me to explore the other four stages of grief, as I exited stage one – denial.
Anger: I hate this illness, how dare it pick me, no one understands, God’s picking on me that’s what he does. Smite. Smite. rage rage rage
Bargaining: Maybe if I eat perfectly. Maybe it’s because I have been a bad person. This is punishment. I’ll be so good from now on. Honest. I’ll get rid of all stress, I’ll eat right, give up my morning coffee anything! Just give me my health back!!!!
Depression: What’s the point?? It’s been MONTHS I’ll never get better. I’ll get worse. I’m boring. I only talk about my health. I’ll never work again. I give-up. What job can I do that requires no energy??
Acceptance: This is how it is for the moment. Progress not perfection as a friend of mine says. This will too shall pass, be patient. Be kind to yourself.
Somehow by the Grace of God, although I am still a regular visitor to anger, bargaining and depression, these days I find myself able to arrive more frequently at the stage of acceptance.
*** If you enjoyed this then keep an eye out for my upcoming book on the realities of living with chronic illness. This article is a chapter from that book.