There was a question posed on the ME Association’s Facebook page this week from someone asking how you get through the days with chronic illness and remain sane. Good question! There is no one size fits all answer, however, because we’re all different and motivated and made joyful by different things. Just like any situation in life you have to find a solution that’s right for you and it may not be the solution that someone else would choose.
Six years into having ME I realized I was going to be ill for the rest of my life (I had no idea at the time I also had Ehlers-Danlos and mast cell disease). I had a lightbulb moment and it was this: I had to stop fighting my situation. The disease and I were now one entity and we had to learn to live together. I finally relaxed into the illness and adapted my life around it. I started to live again, not just exist. I bought a computer, got in touch with other sufferers and took on some voluntary work from my bed.
Now, fourteen years later, I am happier than I’ve ever been despite a very challenging physical situation and not a huge amount of support. Here are some of my personal strategies on how to not only survive, but thrive, with chronic illness:
- I live in the moment. Yesterday is done. None of us know if we’ll see a tomorrow. The only time that exists is now.
- I do what works for me even if it flies in the face of what works for other people. For example, I sodding well hate meditating. It’s BORING. Yet when I study a flower in order to photograph it, the light, the form, the colour……….I can get lost for hours. This is where I find my peace, my joy and my spirit, not sitting painfully cross-legged, with my back killing me, breathing through a blocked-up nose trying to not think about thinking 😉 .
- If I’m feeling low, I ask myself the question “if a doctor today tells you you’re terminally ill and have 2 months to live, how would you feel?”. It makes me look at the world in a totally different way. I cherish the sunset. I cuddle my dog more. I truly appreciate my warm, comfy bed or a soak in a hot bath. It’s always the little things, not the big, which give us the most pleasure and which we totally take for granted.
- I have hobbies. Things I feel passionate about and which bring me a sense of joy and achievement. When I was bedridden this was designing a newsletter for an ME charity and crocheting. As I’ve improved I’ve enjoyed gardening and photography.
- I won’t tolerate bullshit. I have dumped my boyfriend, close friends, family members and anyone else who either doesn’t support me or causes me grief. It’s been totally liberating. I won’t put up with drama or constant negativity, as it robs me of very precious energy.
- I don’t care if someone likes me, or doesn’t like me, or is totally indifferent to me. I really don’t give a toss whether anyone approves or disapproves. I live MY life.
- I learned to say no. It was life changing. I haven’t attended a single community event in my small village since I moved here 10 years ago. The neighbours mostly think I’m weird and anti-social but I couldn’t care less. I hate group events like Sausage Sizzles or parties and I’m not using my extremely limited energy on things I can’t stand. This is where having a chronic illness is a total bonus – I can just say I’m not well enough to go and people can’t argue with it 😉
- I have always had rescue animals during my illness. Cats when I was very poorly and a dog now I’m well enough to cope with one. They give me a reason to get out of bed in the mornings and their unconditional love and acceptance brings me joy every day. I have never smiled and laughed as much at anything as I have my dog.
- I’ve physically adapted my life around my illnesses. I struggle to read, so I bought an ipod and listen to audiobooks instead. I can’t walk far, but love being outdoors, so I bought a 3rd hand mobility scooter. I struggled to lift the kettle, so I bought a kettle that doesn’t need lifting. I’m not a martyr and find the easiest way to do everything.
- I am accepting. I don’t fight life. If a situation can’t be changed (like my health) or my life is affected by things beyond my control (like my best friend walking away) then I accept that and move on. There is no other choice. Let it all go.
- I have a purpose for every day. Even if the purpose is just resting so that I won’t get too sick.
- I am happy in my skin. My looks are fading, I’m losing my teeth and I’m going grey and I absolutely don’t care. I am unique and I am special and so are you.
The biggest lesson I’ve learned is to live a life that works for me. I love being amongst nature. I love animals and watching wildlife. I don’t care about my appearance and will probably end up like an old bag lady 😉 Stuff isn’t important to me. I do the housework when it’s critical (this from a person who used to be a complete control freak and perfectionist!!). I quite like solitude and I’m really not a big people person.
It’s more difficult than you think to live your own unique life when we live in a society which constantly tells us what we should own, buy, be. A society which celebrates youth, beauty and health and makes anyone less than physically perfect feel like they’re worthless. I watch the Real Housewives who have everything we’re told makes us happy: botox enhanced youth, magnificent houses, pretty children, obscenely wealthy husbands and enviably flat abs. But not a single one of them is happy. They are not fulfilled. They are not joyful. They do not have inner peace. And if it were a choice between their lives and mine I’d choose mine every time, illness or no illness.
“Strive to be happy”