Running the chronic fatigue marathon
Living with an invisible illness
Imagine this: waking up everyday feeling achy and exhausted, like you haven't slept at all.
Imagine everyday tasks making you feel like you've just run a marathon, not being able to wash your hair without feeling like you've just bench pressed 40kgs, making lunch and having to rest afterwards because of the effort.
Imagine your brain getting foggy when trying to have normal conversations with friends, getting words muddled and confused, even though you've used them a million times before.
Imagine not being able to send texts, emails, or even read because it all feels like it zaps any energy that you do have right out of you.
This is the reality for chronic fatigue sufferers, and this became my reality.
I was your typical go-getter Energizer bunny. Working in bars while studying at uni, partying when I wanted to, hitting the gym five times a week, but I started to notice I wasn't bouncing back as much as I used to.
I casually asked the doctor to check my iron levels and other energy-related things at a check up, and when everything came back normal I put it down to "getting older" at the ripe old age of 25.
So I carried on, getting my degree, moving to a new city, getting my dream job at a highly renowned advertising agency, smashing myself at the gym, socialising, and living a normal busy lifestyle.
Except for the fact that there was always an underlying tiredness that I just couldn't shake. I'd give myself a pep talk saying this is how busy people feel and to suck it up sister.
Then it all hit me and everything came crashing down.
I got something that resembled the flu that I couldn't shake for over a week.
At that stage I was fed up with feeling like this and wanted to be back to my normal bouncy self who could juggle a million different activities and still feel a million bucks.
Doctors hadn't helped.
I was getting in my car at the end if the day and driving home in hysterical tears for no other reason other than sheer exhaustion.
By this stage I was beginning to realise that this probably wasn't normal.
It was around my 26th birthday so I asked mum to give me a naturopath appointment as my pressie. This was to be the start of my Chronic Fatigue journey as I now know it.
My first naturopath pick was a disaster. She guided me down the path of having "Leaky Gut Syndrome" and advised me to start a specific and gruelling diet to cure it, which subsequently made me faint on day six.
At this stage I had already taken a week off work and didn't want to take any more being the newbie and still wanting to prove my worth so I was pushing through the pain.
Getting dizzy and blacking out sent me a message that I probably shouldn't be doing that.
So I sent a rather angry email to my naturopath and went back with boyfriend in tow for moral support to say how unprofessional it was putting me on such a severe diet without the right advice or support to go along with it.
She realised that I was far more depleted than she initially thought and uttered the two words that would finally put into place all that I'd been experiencing emotionally and physically for the past six months. Chronic fatigue.
Work needed more than a naturopath's opinion to validate my new found illness, and even with all the faith I have in naturopaths, to be honest so did I.
So I found a new doctor, who asked questions, took bloods, poked around a bit and came to the same conclusion.
So it was confirmed.
Work wasn't so convinced.
After three weeks off work and a note from my doctor, they kindly sent me to a psychologist picked by them, just to make sure I wasn't bluffing.
Great, I thought, not only am I completely and utterly physically spent, now they think it's all in my head.
The reactions from people when I told them what I was dealing with was a mixed bag of confusion, inquisitiveness, dismissal, and sympathy.
There was a lot of "I'm pretty tired, maybe I have it too!" or "But you look great!" along with a forced laugh from me and a visualisation of a karate kick to the jokesters tenders. I know the best intentions were there, but I still wanted to junk punch these people.
The benefit of the psychologist was that she worked with our wonderful health and safety liaison to organise reduced hours to ease my way back into working.
I started doing two hours a day. The week after I increased to half days (the crying car escapades continued) and the week after that I went back to full time, convincing myself I was strong enough to do it. I wasn't. After a week and many discussions with my very understanding boss, I finally decided to choose my health and wellbeing over my budding career.
That was the hardest and best decision I ever made.
But I still wasn't giving up without a fight.
To keep my sanity and feel like I was still a normal, functioning human being I decided to work at a less demanding job in a friends retail store two and a half days a week. This lasted for about three months before I finally caved and gave in to the fact that nothing is less demanding with Chronic Fatigue.
At least that's how I saw it at the time, like I was giving in, giving up.
Looking back I wish I had let go of my worries about my career at the first utterance of Chronic Fatigue Syndrome. Hindsight is a beautiful thing.
I now have had Chronic Fatigue (pet named "the chron fat") for about a year and half, and have not been working for about eight months.
It has been a rollercoaster ride of emotions, energy levels, discoveries and learning.
I have been through acupuncturists, doctors, osteopaths, and naturopaths trying to find a cure. I now know there isn't one outright cure (again that beautiful hindsight) and that time and rest are the best healers.
I now have a wonderful naturopath who has helped me through the past year with support and advice, and a doctor who has an understanding of the illness and its debilitating effects and supports me by providing medical certificates for financial assistance.
I have a far deeper understanding of the body (mine in particular) and how it works, how to listen to it, and how important nutrition is to the healing of your body, as well as the prevention of illness.
The support I have had from my family and boyfriend has been invaluable and unwavering, and I know that going through this without them would have been a great deal harder.
I count myself lucky, as I know there are people struggling with illnesses who don't have this kind of support, and I feel for them deeply.
Although this has been the hardest year and a half of my life, I wouldn't change it as the lessons I have learnt far outweigh the struggles I have been through.
I know I am on the path to recovery, slowly but surely, actually slower than slowly, but I know I'm on the way up and that keeps me going on the days I can't get out of bed (which are far less frequent, but still there).
I still find it hard and frustrating that I'm not my energetic bubbly old self, that I can't exercise without feeling like I've been hit by a bus a few hours later, that I can't socialise like I used to or that I can't work as my energy comes in sporadic roller coaster waves. Like anything in life there are good days and bad days.
But there are glimmers of hope that keep me going. When I go for a walk and can don't collapse in bed for the rest of the day, when I do the grocery shopping without having to rest afterwards, holding a conversation with friends for an hour without feeling like I've lost all my vocabulary and smarts. These are all high five moments in my battle to beat the chron fat.
And I know that there are people in the world going trough worse, more painful and trying times than me and that I should count myself lucky.
With all that I've learnt over the past year and a half, there are some things I wish I'd known at the beginning of my illness that would have helped me through the darker moments, that I'm going to share as my guide to goodness, in no particular order.
1. Acceptance is key.
I still remember the day (about six months into my diagnosis) that I finally accepted the fact that I was sick. It sounds strange because I'd known it for a good six months, but the difference between knowing and accepting something is huge.
After finally accepting the fact that I wasn't the same person physically that I used to be, and that I wouldn't be for a while, I felt my body let go.
I didn't fight my body when it was tired, and sore, instead I listened to it, acknowledged that it sucked but went with it rather than trying to push against it. This is the point I believe I started to heal as I was letting my body do what it needed to get back into healing mode. Which leads into my next nugget of knowledge.
2. Let it go.
Disney's got it right. Letting go is the first step to acceptance. For so long I was mourning for my old life, my fit body, my energy and vitality.
I got sad sending my boyfriend off to parties without me, got jealous of people living normal healthy lives, being able to work and go to the gym without consequence. Once I let go of that life and realised that wasn't going to be my life again any time soon, I stopped getting FOMO (fear of missing out) and discovered the joy of missing out.
Listening to friends complain about hangovers I'd relish in the fact that I wasn't spewing my brains out or trying to combat the effects with fast food. On a Friday night in (yet again) I would get joy out of not having to decide what dress I was going to wear or how I was going to do my make up.
These things that I craved and missed soon became things I enjoyed missing out on, and realised that I wasn't actually missing out on all that much. There's nothing quite like seeing a night out with sober eyes to make you get see the JOMO.
3. Realise that health is wealth.
Our society seems to have this warped value system that puts job status, expensive cars, houses and clothes before putting our bodies on the top of our priority list. I know I used to.
Even though I ate pretty healthily and worked out at the gym, I would never choose to buy vitamins, supplements or the pricier organic produce over getting that beautiful leather jacket that is three weeks pay that I've just got to have.
I'd rather spend less on groceries and have more money left over for seemingly more important things like socialising and looking good.
My how things have changed! I have a beautiful array of clothes in my closet with nowhere to wear them. The importance of what we put into our bodies is immense, and it's hard to realise this level of importance until the control you have over your body is taken away from you.
I have spent countless amounts of money on prescriptions, supplements, appointments and treatments over the past year and a half, and I would spend it all again plus some if it meant I was better.
You can't put a price on your health. Invest in your health, buy the more expensive spray-free fruit, and choose buying vitamins over your daily coffee. In the end your body will pay you back, and you'll realise that health is invaluable. But in saying that...
4. Do buy some nice comfy clothes.
If you're a chron fat like me, and you've gone through the acceptance stage, you know you're going to be living in your tracky dacks more than anything.
So to save yourself feeling like a total and utter slob, treat yourself to a nice pair of trackpants and a comfy top or two that doesn't make you feel like your living in a trailer park. When you feel like you look semi decent, this can go a long way when you're actually feeling like death. Without the energy to put on make up or do your hair, a little thing like the right track pants can go a long way in making you feel semi-human.
5. Understand that not everyone is going to understand.
It's hard to understand a situation you haven't experienced yourself. Imagine trying to understand what it's like to live in Kenya when you've lived in Manhattan your whole life. It's just not going to happen. The same can be said with illness.
I used to go into such detail trying to explain Chronic Fatigue to people, particularly the non-believers and the "I'm tired too"-ers.
It would exhaust me and I'd come out of the conversation frustrated that they still don't understand what I'm going through and that they think I'm just tired, or worse; lazy.
But then I realised that I didn't understand what Chronic Fatigue was until I experienced it, and never knew it was on the level that I have now experienced.
By understanding that it's hard to understand, I stopped wasting my energy trying to convince the unconvinced and focused on using the support of those who understood and/or accepted what I was going through as a very real and very debilitating thing.
I knew what I was going through, and so did those I loved, which is all that really matters.
6. Know that you will get through this.
Whether it's one year, or five, there is a healthy glowing light at the end of the long tiring tunnel. It's so important to know that, as it will keep you out of the deep dark hole of despair.
It's ok to not be ok some days, and to cry and get the sadness out of your system. I thought I was emotional before this journey, I am now a seasoned crier.
There's nothing like a good cry to help you let go of some emotions, just make sure you don't wallow in it. Have a cry and a complain to someone willing to listen and not judge and give you a cuddle, but then let that go. Focusing on the sad, frustrating stuff is only going to hurt you more.
7. Go with your gut.
Your head can trick you with rationalisations and your heart can trick you with lusts, but your intuition and your gut will never lead you astray.
If you feel like a doctor isn't quite right, dump them and find another. If you feel like you might need to try alternative medicines or treatments, do it. You've got nothing to loose by listening and giving things a shot. Speaking of guts...
8. Be a flexitarian.
With all this listening to your body you will be doing, make sure you do this when it comes to food as well. No doubt you will be eating lots of fresh healthy foods to help your body bounce back to its old self, and give it the nutrients it is most probably lacking which is super important. But when it comes to meat and fish be flexible and eat what you feel like eating, if any at all.
I have found since being sick I eat a lot less meat, not because I like it less, but because my body isn't needing it as much. I'm listening to it and what it wants which seems to be veggies, veggies and more veggies, and sometimes meat. Each day will be different so listen, go with it and be flexible rather than sticking to a strict diet or set of meals.
Last but not least, remember this; you are not alone. There are an estimated 20,000 Chronic Fatigue fighters in New Zealand and over a million worldwide. Because of this it is becoming far more recognised as a serious illness and has come a long way from being called the "yuppie flu" in the 1990s.
A great thing I did was find friends going through the same or similar experiences through mutual friends and connecting via a Facebook group we created where we could post and share new information with each other, post inspirational or funny quotes, support each other and ask advise or just have a good old vent.
Knowing that I wasn't the only person experiencing the chron fat and sharing those experience with people who knew first hand what I was going through was and still is a huge reliever.
So whether you have Chronic Fatigue, or whether you are a pillar of health, the underlying point I'm trying to get across is to be kind to your body. Listen to it, and value it above everything else.
Without it you wouldn't be here, and here can be wonderful when you slow down and listen. Whether you're taking away a new knowledge, understanding, inspiration, or just a new point of view on Chronic Fatigue, my journey has all been worth it.
So thank you for taking the time to listen to my story, and I hope that your life is full of health and happiness and a whole lot of energy.
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