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  • Writer's pictureDearbhla

Eight Things I Wish I Had Been Told When I Was Diagnosed With MS:

Allow Yourself to Grieve.

The shock of an MS diagnosis in the midst of moving countries meant I trudged forward in complete denial for the first four months, which led to two hospital trips and vats of steroids. Replete with a host of new symptoms, I felt angry for being sick. A guilty narrative played in my head like a depressing Moby track: If only I had taken better care of myself, ‘I’ wouldn’t have created more lesions. I remember going to a restaurant and having a complete sensory overload because I became overheated. I had to strip off in the loo and splash myself with water like a complete lunatic. My excursions were curtailed somewhat after that, which inevitably made me depressed. In a strange way though, when the world shutdown, I was forced to deal with my grief. I no longer had FOMO because I was too sick to join in. Everyone’s lives were on hold. It was through the highs and lows of lockdown living that I started to reconstruct my life.

Beware The Google Rabbit Hole.

Often neurologists are so used to dealing with the clinical side of MS, they tend to forget about the confusion and loneliness that accompany such a life altering diagnosis. I was told to stay on medication but offered no holistic advice around lifestyle, mental health or diet. Without any guidance, I fell down the wellness internet trap in the quest to ‘heal’ myself. It is well established that a healthy lifestyle is essential for MS from exercise to diet so do learn about your condition but doom scrolling MS is the void best avoided. Sometimes too much information can be a bad thing. I recommend limiting browsing to websites like MS Trust. Find blogs written by those with MS, for example, MS Together is a community comprised of young people living with MS. Healthline is a health and wellness website vetted by medical professionals. I also follow Overcoming MS, a British MS charity providing support on healthy lifestyles.

Take Control of Your Health.

Incorporating medicine, good nutrition and healthful complementary therapies, like acupuncture, reiki and reflexology, and meditation has really helped me. If you want to make serious changes, speaking to a dietician and seeking advice from a fitness professional could be beneficial. Make sure you get plenty of Vitamin D, somewhat challenging in Ireland so I take supplements. I have a tendency to busy myself at 9pm to make up for what I procrastinated doing earlier, which means I am even less productive the following day. So, sleep is definitely something I can’t emphasis enough. Lastly, taking control of your own health should not be to the detriment of your recovery. At one point my weekly calendar was filled with things that I thought were going to make me feel better but juggling all of these ‘wellness’ programmes inevitably got too much. Don’t put pressure on yourself to change your lifestyle straight away.

Comparison is The Thief of Joy.

MS is different for everyone so don’t beat yourself up if you have a flare up even if you have made what seems like monumental life changes. At the end of the day it is trial and error. Choose what works for you – MS isn’t one size fits all. It is helpful to learn about what others are going through but it can also be anxiety-inducing as sometimes if we don’t end up miraculously better like they are, it can be quite dejecting. As MS is often invisible, it means we never really know what others are experiencing.

Slow and Steady is the Name of the MS Game.

Take your time and try not to push yourself too hard. It can be very overwhelming so take incremental steps and celebrate the small victories. If you are impatient like me, this will be a bitter pill to swallow. MS doesn’t really adapt to your timeframe. Unfortunately. So, you have to change your pace to adapt to it. It can be really irritating navigating the flipflopping of feeling fine one day to waking up feeling like your brain has been stuffed with cotton wool overnight for no apparent reason. The longer you allow yourself to recover, the better you will feel. It’s inevitable that we have flare ups but recognising triggers and slowing down is the best thing to do.

Create a Support System.

Relying on others can be hard but asking for help is part of taking care of yourself. If you choose to divulge your diagnosis, make sure people know what you’re going through, how you feel and what your triggers and symptoms are. I know a few people who have chosen not to reveal their diagnosis because they are worried about repercussions, how work may treat them, how friends might react, or how it could impact their dating and social life. I recommend telling at least your close family and friends. I have learned that taking control of my narrative has been empowering but choosing when you feel comfortable to speak about it is the most important factor.

This Too Shall Pass.

The limitations of MS can be incredibly frustrating when you have a relapse. Try to remember that a relapse is likely to be temporary (for the most part) and flare ups tend to dissipate with sleep, stress relief and relaxation. Even if it doesn’t seem like it, with each day you are definitely becoming more able to cope. It took me over a year. For some, it may take longer. Listen to your body and get to know your symptoms. This is so important as it means you can avoid full on flare ups or relapses by taking time out and reducing inflammation.

‘If You Have Good Thoughts They Will Shine Out of Your Face Like Sunbeams’

You can’t control what goes on around you but you can control how you respond to triggers or circumstances. Our brains are wired towards negativity so as difficult as it may be, try to focus on the positives, reduce stressors and set realistic goals. Prioritise yourself and surround yourself with people who make you feel good. MS doesn’t take away from who you are as a person. If anything, it has made me more resilient. It can be a lonely journey and it takes time to build yourself back up. Once the initial stress of the diagnosis wears away and you gradually learn what works for you, the small successes becoming more meaningful and you will slowly begin to feel better.

This was originally written for MS Ireland


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