Self-Care Tips From A Nurse Living With Multiple Sclerosis

With Invisible Disabilities Week upon us, we chatted with MS Canada Ambassador Imaan Waja, a labour and delivery nurse living with multiple sclerosis. Self-care has helped Imaan manage her symptoms, and we chatted with her to learn her top tips and gain more insight for Invisible Disabilities Week. —Noa Nichol

Hi Imaan! Please tell us a bit about yourself to start.

My name is Imaan Waja. I am a South African-Canadian Muslim woman born and raised in Northern Ontario, Canada. I am a daughter, sister, cousin, best friend and Husky mom and I have relapsing remitting multiple sclerosis. I love sports. You name it, I’ve probably tried it at some point in my life! I grew up on karate, skiing, cross-country running, swimming, soccer and tennis. In more recent years I’ve been more into yoga and Pilates. On the side, I’ve also delved into horseback riding, rock climbing and very recently surfing. I would really like to try my hand at freediving—we’ll see. I am also very artistic and musical. My friends would say I have too much energy. I am a little bit all over the place; I think I just have a very curious mind. I’m always reading. I’m interested in new perspectives, different ways of being in the world; I think I have a very growth-oriented mindset. I thrive on a challenge and new skills are always exciting.

Can you tell us about your MS story? When were you diagnosed?

I was diagnosed with MS on November 6, 2016, one day after my 24th birthday. I had just attended and worked behind the scenes at some shows in the 2015/16 Rome Haute Couture Fashion Week with Haute Couture Academy of Fashion, completed my final preceptorship in laborand dDelivery for my bachelor in nursing and written my licensing exam to become an RN. The day after my exam I took the Go train downtown Toronto to attend a travel nurse recruitment event. On my way home, I began to notice numbness and tingling in my left foot and lower leg. Two weeks later, that sensation was as high as about my fifth rib. My parents are both doctors, and I had given them permission to be involved in my health-care team, so my dad was actually the one to tell me I had around 30 to 40 lesions scattered across my brain and spinal cord. The diagnosis definitely changed the trajectory of my life in a really big way.

So, for those who don’t know, what is MS and what makes it an invisible disability?

Multiple sclerosis is the most common neurological disease affecting young adults in Canada. Interestingly, women are actually three times more likely to be diagnosed with MS than men. It is an autoimmune disease of the central nervous system, which includes the brain and spinal cord. The immune system becomes hyperactive and self-destructive. Specifically, it attacks the protective coverings of your own nervous system. This interferes with brain-to-body signals and vice versa. Think of wires without the plastic covering over them, the electrical signal either cuts out, is significantly slowed down or the message gets distorted en route, like broken telephone. MS is unpredictable. A form of Russian roulette of the brain and body. We cannot predict where the attack will be in the brain and spinal cord which means the symptoms vary from person to person. They can include anything from numbness and tingling, vision problems and impaired speech, to loss of balance, coordination, fatigue and loss of mobility. MS can be an invisible disability because many of the symptom presentations are not visible to the naked eye. My lesions do not bleed in a way you can see. For example, if we were to meet randomly on the street you wouldn’t be able to tell if the left side of my body was numb and tingly, but I would constantly feel it. You wouldn’t know how much energy and attention I spend attending to that information on top of all the other regular human things—unless I said something. It is invisible to the observer yet it constantly takes a toll on the individual. Over 90,000 Canadians live with this disease. About 60 per cent of those are between the ages of 20 and 49. So young. And approximately 12 more Canadians are diagnosed with MS every day, which is wild.

What was your experience figuring out how to navigate your diagnosis at a young age?

I think I was in shock. I cried. I feel like I had to mourn the life I was planning for myself at the time. Especially because I was fresh out of school. Then, as I came to accept my new reality my mind became more … quiet. I started to go more inwards, to assess what skills and ways of coping I already possessed that would help me face this new challenge. As well as, identify gaps where I needed more knowledge and could develop new skills to face this hardship. There was definitely a sense of relief. I had had so many little health concerns that we couldn’t figure out. The diagnosis gave me a name, a direction and actionable steps and research to hopefully set myself on a path of improvement. I felt like I had to be strong. Put on a brave face. For others, also for myself. I remember thinking, OK, what’s the worst that could happen? Well death obviously, but MS also comes with the very stark reality that all the things you love about your body and what it can do may slowly be taken from you one by one. I remember thinking that was worse. To slowly fade into a less vibrant version of myself. It definitely took me a while to process. Like months to years. I would even argue that I’m still processing. I did a lot of research. The MS Canada website was a really good resource to access information about MS as well as resources and services available. I moved closer to my faith-based teachings. I was raised in a Muslim family. A huge component of Islamic faith is that we are tested in this world. We are taught that God will not test you with any hardship that you cannot bear, and following every hardship comes ease. I surrounded myself with my community. My community being my massive, loving, supportive, kooky family and similar close friends. Having that energy around me as a distraction and a foundation was irreplaceable. I am eternally grateful. I also reached out to establish new communities by attending events like the MS Walk. Through those I was able to begin building new connections with people going through similar struggles and facing similar fears to mine. I think ultimately, challenges force us to improve and grow. They can be very lonely, very isolating. But, that’s where we really learn self-love and inner strength. The way I look at the diagnosis especially, but also when I was in the middle of my treatment, I view it as a redirect. It forced me to analyze my lifestyle, goals, and ways of being and replace what wasn’t serving me with better habits and deeper self-knowledge and understanding.

What lifestyle changes have you implemented to battle the invisible symptoms of MS?

1. I no longer feel guilty for prioritizing self-care. It’s not selfish. The more you fill your own cup with love, nourishment, kindness, sleep, exercise, silence, mental clarity and resilience, the better you as an individual can show up for yourself and for those around you.
2. Just like the earth, the body goes through periods of high production and activity, think spring and summer, and periods of rest and rehabilitation, think fall and winter. Both periods are needed for balance, both are needed for optimal functioning. The more we ignore those rhythms and cycles of life the more we suffer. And I don’t like to suffer. So now, I try really hard to live my life with respect to those cycles. I am aware of and work within my energy on a daily basis, sometimes that means slowing down.
3. I try my best to communicate my needs and create a safe space for others to do so as well. We cannot help each other heal if we don’t know there’s an injury. We all function and grow in relation to each other, humans were not built to live life alone. Part of living in your community is that healthy level of communication.

What’s your self-care philosophy? What sorts of things do you do to make a positive impact in your overall mood and energy levels day in and day out?

My self-care philosophy is glow through what you grow through. So, we all suffer through the struggle, just make sure you self-care through the suffering. That way you come out on the other side of growing … still glowing. My mom is going to cringe at that comment! The biggest thing that I do that makes a positive impact on my overall mood and energy levels is I talk to myself as if I am my own Hype Team. Because I AM my own Hype Team. Like if I do something well, or on time, or just check something off the eternal to-do list. I am the first one to hype myself for a job well done. I am the first one to celebrate. And I make sure to celebrate the small wins ESPECIALLY, because they add up into the big wins:

• I slept for over seven hours; ugh gorgeous.
• I made the bed first thing; dance party.
• I cooked myself a great meal; gold star baby!
• Drank a full liter of water; girl you are GLOWING.

It’s a vibe. Everyone should do it! Hype yourself up, because that glow flows into everything and everyone your life touches. Lastly, all you can do is your best with the energy you have in each moment and then have faith. Your best is often more than enough, but you have to believe in it.

Speaking of the daily, what meals do you like to prepare??

I eat primarily whole foods. Which to me, means a very “farm-to-table” mentality. I consume very minimal amounts of processed and deeply fried foods. I have really eliminated foods with high added sugar content, preservatives or lengthy “shelf-life” foods. I try to eat seasonally as much as I can. I am also a lot more mindful of the habits we build surrounding how we eat. For example, regarding the timing of meals, how quickly we consume a meal, what fluids we drink and how much in relation to the quantity of food. I am very intentional and specific in my choices. Which may sound overwhelming or like “too much effort” to some but it’s become so habitual to me that I don’t balk from the change anymore. There is peace in it simply because my body is so much more in tune and at ease than before.

What are your favourite movement sequences for morning/night

Routine and consistency are difficult for me because, as a registered nurse, I do shift work. I try to establish a routine for when I’m on a set of shifts and a routine for when I’m off.  My morning routine when I’m off set is waking up before sunrise. I drink hot water with lemon to rehydrate. Of all the prayers the one I try to accomplish the most consistently is the morning prayer. I follow that with meditation, journaling, and 30 minutes of yoga to get out of my mind and into my body.  Then I take my husky for a run to get us both out of the house and into nature. Then home for an online Pilates class, breakfast and carry on with my day. That routine of nourishing my mind, body, and spirit before I allow the rest of the noise of the world in has really worked wonders when I’m able to stick to it. I don’t have the most well-established pre-night routine just because I often work night shifts. I am much more distractible as the day goes on. I find it harder to stick to routine. I would say that one is a work-in-progress for sure. It’ll probably be similar; more yoga and breathwork.

What mindset shifts have you had to explore upon your diagnosis and how has that helped her reframe her illness?

The biggest mindset shifts have been:

1. Recognizing every individual is on their own journey and we’re all at different points in our plotline. You might have just been dealt an inciting event; I may be coming out of a heavy character build. It doesn’t mean either of our stories are better or more successful, it’s just how life is. So understanding that concept and just trying to meet ourselves and others with patience, kindness and curiosity makes living our respective stories easier on everyone. It also helps me mentally deal with the idea of being “behind” where I should be in life. With this mindset, I always feel like I’m right where I’m meant to be in my story.
2. Understanding that in this life we are gifted only one body. And Every Body is different, with unique superpowers and faults. What works or did work for another body, may not work the same for your body. Your relationship to your body is the longest lasting relationship you will ever have. So as much as you focus on other relationships, as much as you listen to others and learn from others – build that same level of connection, give that same energy and time to the relationship you have with the body you are in. Listen to it, learn from it. Your body is constantly communicating with you. But you have to shut out the noise from the world to actually hear what it’s trying to tell you. Often our bodies know what they need, we just have to hear it to be able to accept it and then be willing to give it what it needs and asks for. 
3. Organizing my days based on energy instead of time. The MS has made me hyper aware of my energy on a daily basis. If you’ve heard of the Spoon Theory, this mindset shift aligns with that theory. Instead of asking myself, “How much time do I have to get all these tasks done?” I ask myself, “Do I have the energy this task requires today or would it be better shifted to another day?” In this way, I am aligning the to-do list with my body instead of trying to align my body to the to-do list. It’s a work in progress but overall has been working well so far.

What are the top things you’d like people to know about MS, and about invisible disabilities?

I think overall I would just want to remind myself and others that we have no idea what inner or invisible struggles others are facing on a daily basis. So whether it’s in the home, workplace, or the line up for coffee—communicate kindly.

Kindness is free.
It helps. It heals.
It’s the biggest and easiest gift we are all capable of giving.
Sprinkle that sparkle, everywhere.

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