Tuesday, 10 May 2016

Hannah's perspective: The 10 unexpected blessings of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

As I have got to know Hannah, I have been blown away by her positivity and enthusiasm for life. It therefore was no surprise when she chose to write about the 10 unexpected blessings of ME/CFS. Hannah doesn't deny the harsh reality of this illness, but recognises that trials sometimes bring out the best in people, even if we wish that they had never happened in the first place. I am thankful for Hanah's unique perspective on this topic.

Myalgic Encephalomyelitis (ME), more commonly known as Chronic Fatigue Syndrome (CFS), is a complex, multi-layered, neurological illness. It has many symptoms and can affect almost all of the organs, including the brain and spinal cord. For all sufferers in one way or another, their life has been completely changed. Currently there is no ‘test’ to diagnose ME/CFS and no cure. This makes it incredibly hard for patients to be diagnosed and treated. As well as this, lots of sufferers look really quite “normal”, leading to lots of confusion and misunderstanding surrounding the illness. An estimated 17 million people worldwide suffer from ME/CFS.

I’ve had ME/CFS for just over three years now, and it is without a doubt one of the hardest things I’ve ever had to deal with. It’s something I wouldn’t wish upon anyone, your life as you know it is completely turned upside down. The simplest of tasks like; brushing your hair, driving to work, going out with friends, having a shower or exercising can be unbearable and even impossible. The last thing I want to do is understate how awful this illness is, but I’m also a huge believer in the saying “With every bad, comes some good”. Sometimes life sends us blessings in very strange ways (very strange!) but all you can do is learn from them. ME/CFS has certainly taught me some incredible lessons, and blessed me in weird and wonderful ways.

So here is what I call- ‘The 10 unexpected blessings of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’:

1. You appreciate the little things. For most people life is so busy, everyone is rushing from one thing to the next, focussing on the next big thing, task they have to achieve, or holiday. I was exactly the same. Being a perfectionist type personality I was always thinking about what could be the next thing I could achieve, would get super excited and focus on the next “holiday” or “adventure”. Which is great and I love that part of me, but on the other hand I just wasn’t appreciating the simple little things right in front of me. Illness forces you to notice these things, as the big picture stuff just isn’t there anymore. You’re focusing on survival, and you realise that the simplest of things can bring you joy. It sounds very corny, but every time I drive home from somewhere now I notice how beautiful Mt. Dandenong looks. Because for months I didn’t leave the house, now there’s not a day that goes past where I don’t look up at those mountains. A chai latte can bring the biggest smile to my face, or just simply listening to my family laugh around the table, because for so long I was in my bedroom and couldn’t join in. Now I can, and I think that’s one of the best feelings in the world.

2. You grow an enormous sense of empathy and compassion for anyone else suffering. There’s no way you can go through so many awful experiences with health, and not feel enormous empathy for someone going through a similar experience. I am hopeless now, even if I watch a T.V show on someone I’ve never met, struggling with their health I can easily shed more than a few tears!

3. You learn who your real friends are. This is probably one of the hardest, but most rewarding things I’ve had to go through. When you’re chronically sick you really learn who’s there for you at the end of the day. Unfortunately there will be friends that you thought cared, and some of them probably do, but are just way too caught up in their own busy world. The friends that still invite you (even though you’ve had to cancel the last three times), that still send you a message to check how you’re going, that cook you a meal or drop off some treats for you, that offer to drive you to appointments or social events- they are absolute treasures! They’re true friends. I can only count my true friends on one hand now, but I know that whatever happens they’ll always be there for me and I’ll always be there for them. I’m the luckiest girl in the world to have them in my life.

4. You will hit rock bottom, but from there the only way is up. There’s nothing worse than being sick, you don’t feel like yourself, you can’t do what you used to be able to do- let’s be honest it sucks! But once you hit that very horrible low, the only way is up! You develop a very strong sense of persistence and hope. One of my favourite quotes from Bob Marley sums this up beautifully “You don’t know how strong you are until you have no choice but to be strong.”

5. You will appreciate those who love you, on a completely new level. I have always been way too lucky and had the most incredible, supportive family, boyfriend and friends. I’ve always loved them to bits, but being sick means you can’t do an awful lot for yourself, and you become very dependent. You’ll see them pull up belief and strength when you thought there was none left, they’ll pick you up when you just can’t do it anymore. Without them I would not be anywhere near where I am today, I owe them everything. Thankyou doesn’t even cut it!

6. You learn to accept help. There is no way you can deal with this illness alone. You learn that it’s actually not weak to accept help, that it’s strong. I was involved in the Yellow Ribbon Program at school (an initiative encouraging people to ask for help when they were struggling). Now a few years down the track, I suddenly realised what they were going on about, it’s extremely hard to ask for help! But eventually I did, and found the best physiotherapist, psychologist, and specialists who still help me today. I also learnt that you can’t do everything yourself (damn unfortunately I’m not superwoman!) and that people actually want to help you. For example my beautiful Mum and Dad. Dad can’t cure ME/CFS for me or take away the pain, but he can make me a beautiful cup of tea. Mum can’t cure it either, but she can drive me to the shops and help me buy some clothes. And guess what, they actually want to because it’s something practical they can do to help.

7. You will discover new hobbies, likes and passions you never knew you had. With a big change in your capabilities, you have to sometimes adjust your hobbies accordingly. Before I got sick I knew nothing about yoga and hated cooking. Now I am obsessed with both! I also discovered vegetarianism, and absolutely love coming up with yummy meals and raw treats to make. Out of a lot of boredom and loss of independence, I also started my own little crafty business ‘Little Big Gems’. I make handmade soy candles, jewellery and ring bowls whenever I’m up to it and sell them. I really believe that without getting sick I wouldn’t have discovered these beautiful things, either that or it would have taken me years to find them!

8. You realise how important it is to judge your self-worth not on achievements, but on who you are as a person. Society today is pretty obsessed with our exterior. This is something I didn’t even notice until I got sick. When I became unwell, suddenly all my ‘exterior’ was ripped away from me. I couldn’t attend uni anymore, I couldn’t work, I couldn’t help out with local charities, and travelling like most normal young adults do was out of the question for me. I felt a huge amount of loss and sadness, I didn’t feel like me anymore as everything I was once able to do was either non-existent, or there in the tiniest amount. It wasn’t until my psychologist actually pointed something out to me, and she said “You’re still you, you’re still Hannah, you actually just have to start judging yourself not on your achievements and what you can and can’t do, but on who you are as a person. At the end of the day that’s all that matters.” She was so right, I no longer felt embarrassed when someone asked me “What are you up to darling? Are you studying, working, or travelling?” Because I realised that those things are great, but they certainly don’t define you.

9. Your resilience will be rock solid. People can be extremely kind, and unfortunately some can be very na├»ve and judgemental. I’ve had people say to me “Did you know ME/CFS is actually caused by emotions you haven’t let out?” “Oh so are you just really anxious or depressed?” or my personal favourite “Ooo maybe I have ME/CFS? I’ve been feeling so tired lately.” Sometimes you’ll feel so vulnerable and you’ll feel like crying, kicking and screaming all at the same time. But in the long run, you will develop the thickest skin ever, and you’ll become the Resilience Queen or King- not much will be able to knock you down.

10. You have a chance to make an even healthier version of yourself. Not many people experience a health event like this that is so big, and still get a second chance. ME/CFS shakes you to the absolute core, but gives you a chance to completely re-invent yourself, including your health. Treatments for the illness are still very trivial, and what may work for some, might not work for others. But overall a healthy diet, stress management, and gentle beneficial movement can help so much. In the long run, if you combine this with treatment options that work for you, you will be so healthy and happy!

Sending love to all the spoonies out there, and their carers. I hope these unexpected blessings can bring a tiny bit of joy and comfort.


Thanks so much to Hannah for writing this blog post, you can find her online at @healing_han on Instagram.

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