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

Allow Yourself to Grieve

I trudged on in complete denial for the first four months after the shock of my MS diagnosis. Overloaded with a host of new symptoms, I felt angry for being sick. A guilty narrative played over and over 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 complete sensory overload. I became so 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 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. Everyone’s lives were curtailed. It was through the highs and lows of lockdown living that I started to reconstruct my life. My symptoms have subsided (mostly), I have changed medication and I try to live my life with MS in the periphery, as much as is possible. But there are a few things I wish I had been told at the start.

Beware The Google Rabbit Hole

Often neurologists are so used to dealing with the clinical side of MS, they can tend to forget about the confusion and loneliness come with such a life altering diagnosis. I was told to stay on medication but offered no information 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 people with MS, from exercise to diet. I encourage others to learn about your condition. This does not include doom scrolling MS! Sometimes too much information can be a bad thing. I limited my browsing to websites like MS Trust. Find blogs written by those with MS, like MS Together which 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, is a British MS charity providing support on healthy lifestyles.

Take Control of Your Health

What has really helped me has been medicine, good nutrition and healthful complementary therapies, like acupuncture, reiki, reflexology and meditation Speak to a dietician and get advice from a fitness professional if you’re making any big changes. Make sure you get plenty of Vitamin D -I take supplements. I still tend to busy myself at 9pm to make up for what I didn’t do earlier in the day. Sleep is definitely something I can’t emphasise enough. 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 got too much.

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.   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 if we don’t end up miraculously better like we think others are.  

Slow and Steady is the Name of the MS Game

Take your time and try not to push yourself too hard. It is all very overwhelming so take incremental steps and celebrate the small victories. It can be frustrating navigating the flipflopping of feeling fine one day to feeling unwell the next. The longer you allow yourself to recover, the better you will feel. It is 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 are going through, how you feel and what your triggers and symptoms are. 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 becoming more able to cope. It took me 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.

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