Indeed, the diagnosis of MS turns your world upside down – but any big news turns your world upside down, doesn’t it? If you want to continue your journey as smoothly as possible, you need to become a professional manager of your energy. Despite the fact that in my early years of diagnosis I lived my life as “go with the flow” (see my previous post), I’ve learnt some things that I – after 15 years of living with this scary little monster – would like to modestly share with the vast world wide web (and highlight all these points with the most intense fluorescent marker I have for my future-me, when I might lose my way again).
1. You have to do exactly those things you think you are not able to (a girl’s gotta do what a girl’s gotta do) …
First, you have to consider your general physical abilities (depending on how much your MS has already nibbled on you). It takes real skills to set your goals correctly; make sure you consider both what you can and what you want. These goals have to be just low enough that you can achieve them, but at the same time also high enough that they are a challenge for you. The most important thing with the “out-of-this dimension expertise” is that you listen to your body. Not to your lazy-self or your overambitious self. Remember – you can set your goals as high as you want but learn to forgive yourself if you don’t achieve them (and read points 3 or 4 in this post).
2. … and give yourself and your body TIME.
I realized my body needs time only after experiencing my last relapse in 2018 (which BTW scared the shit out of me) when I wasn’t able to move my toes (along with a really bad vertigo and lack of balance). The first evening when I slid across the hospital room in my slippers to somehow get to the bathroom, I was completely devastated by how much effort it had taken me to get dressed in my PJ. The next evening this otherwise everyday routine went more smoothly (i.e. my nails didn’t get stuck in my trousers and I was actually able to keep my leg in the air for two more seconds than the day before). Finally, something to smile about! The third day it almost became a well-established process.
I had to push myself forward but at the same time also give myself and my body the time needed to recover from the relapse – even if the planet outside was moving so fast and I badly wanted to be part of this spinning wheel.
We live in a terribly busy world, where it seems only acceptable to do everything quickly. But you should know that life with MS is slower paced: you are slower, recovery from relapse is slower, morning routine is slower, conquering the world is slower. And that’s why I like the advice “just take it day by day,” so much.
3. You are allowed to say “NO”
Being kind to yourself means taking time for yourself. Be a little egoistic. You are allowed to say “no” when you feel tired or just not in the mood for company. Now it is time to put yourself first, because the catch here is: you need to take care of yourself first before you can tend to others. “No” can be said very kindly. Nobody will resent you for being honest (if they do, then maybe you should consider if they are worth your time at all). Indulge yourself in that secret stash of chocolate, read a book, treat yourself to a glass of wine that you’ve been saving for a special occasion.
4. Live your life to the fullest
I am quite sure you’re already aware of what it means to live to the fullest: don’t take anything for granted, enjoy the little things in life, be grateful, be present, blah blah blah. This is not something life coaches are selling just to make us feel better in this world of materialism or to just spread “inspiration porn” on social media. This is something that will help you see the bright side of life, keep you motivated to experience more, to dare to try new things, to meet new people.
The biggest point of living life to the fullest is that you learn from bad experience. That you learn to see the positive side. Yes, MS sucks. Yes, I am not grateful for having this disease (“Never! I’d rather be ignorant but healthy!”), but I am grateful for everything I have learnt from it – I have become more attentive to my thoughts, my feelings, my decisions. I’m taking more pride in every achievement and am more aware of what I want from life (“Oh, do you?”).
5. Stick to your interests and follow your visions but make sure they are suited to your abilities.
So, what do I want from life? I want my life to be as normal as possible despite my disabilities.
I want to travel (“Please do, but don’t go on a Himalaya expedition!”). I want to enjoy nature (“Please do, but don’t go too far and don’t get lost, because you know it will take you a lot more energy to get back.”). I want to work (“I agree, but please do it part-time!”). I want to eat healthy, locally-produced food, home-cooked meals (“Okay, you’re good here – you’ve found yourself a partner who can cook.”). I want to be useful to society (“Become a volunteer?”). I want to ski (“Hmm … A ride on a sled sounds more plausible, don’t you think?”). I want to go to more rock concerts (“And go crazy with the others in the front row? It’s totally possible!) – when this stupid coronavirus finally lets us, of course.
6. Don’t be a prick
Having a chronic illness like MS (or any other chronic condition) is difficult (“No shit, Sherlock!”). Leading “the good life with MS” is even more difficult. Sure, we are all angry: about global warming, about the system, about the unfair treatment of marginalized groups … And all of us who suffer from chronic diseases worry even more by continuously asking ourselves: “How is this going to affect my future?”, “Why the hell did it pick me?”, “What did I do wrong?”, “Will I get better and why not?”. But by doing so, we are only wasting energy and becoming more and more bitter which affects our overall view of the world and consequently everyone around us. This bitterness can quickly turn into anger and hatred. But don’t be mean to others, they are not against you. It is you who is against the world.
7. Tell your story
Talking openly about what multiple sclerosis is, describing my feelings about it, how I cope or don’t cope with it, what means to live with invisible symptoms, what these are and how they impact my life … It made ME more self-aware, and it made THEM (my friends and family) more aware what is like to live with chronic illness. Speaking openly made my life and their lives easier. I’ve become more not-so-egocentric (“Really? Well, yes, I’ve learnt that people around me need to go through a similar process of coping with my disease.”), and they’ve become more empathic to other people with disabilities.
By telling your story you will empower people, not just the ones with the same condition but also all those who suffer from other diseases or just with life (name one who didn’t get hit by the mighty Life!). People will understand you and your situation. They will know your needs better and will try to help you. Like by offering you a hand if you need support climbing the stairs, by helping you find a job that is more suitable to your condition, by improving your living quarters or working environment etc. This is what makes your life with MS easier, so don’t be ashamed to ask for help.
8. Take note of the zillion pieces of advice on how to cure your illness
Like how some random guy from the same apartment building where your grandmother’s cousin lives cured himself of his MS by drinking celery juice and being on a strict diet of only lobster and wild garlic (“– and air.”).
The thing is that everyone you know will try to help you. That’s perfectly fine; learn to listen (patiently) to other people’s stories about what has made them feel better, but take everything with a grain of salt. It’s important to keep a healthy attitude towards all the new things you want to try out, because even if this thing worked for someone, that doesn’t mean it’s going to work for you.
You need balance in everything; do not exaggerate with sports, alternative treatments, the so-called superfoods, listen to your body and what it needs. What you need. And before changing your habits, routine (or even life), remember to do your research. Don’t be afraid of the unknown but prepare yourself for it properly.
9. Don’t be embarrassed to use that damn stick.
And make sure to get yourself a cool one!