I couldn’t agree more. Life without a chronic, degenerative illness is often compared to a rollercoaster ride, but it certainly is a wild one when diagnosed with MS. In fact, you can’t go through daily life unscathed when you deal with chronic pain, immense fatigue, lack of sleep, relapses and many other symptoms. Add issues on the home front, professional and personal stress to the unpredictability of living with MS, and you get a deep vault of emotional challenges that will try to test you every day.
Personally, since being diagnosed ten years ago, I’ve seen so many feelings pass by that at one time, it earned me the title of being a “walking disaster zone.” In the months following my diagnosis, I felt anger, stress, grief, anxiety and a morning mood that lasted over a month. I can safely say that ten years post-diagnosis, many other feelings popped up, but that today my mood is stable. It wasn’t plain sailing though.
Emotional challenges are not always caused by negative, outside events, as MS itself can be the trigger. When there are changes in the brain area that make you feel or react, behavioural changes (and challenges) happen, i.e. laughing or crying at inappropriate times. Side effects of certain medication like steroid treatment, can also be a reason why your behaviour and emotions change.
This is a lot of take in, and it adds extra layers of emotional challenges. Knowing which emotion is which, why they happen and how to get past it, is a hard task. As unsettling and stressful this can be, as important learning to sail past them is. Nobody makes it past the first hurdle unscathed when you’re just diagnosed. If or when you’ve been living with MS for a while, and you find yourself feeling emotionally challenged for the first time, having to face up to your emotions can be a stumbling block. It’s necessary to sit back, take stock and look for help.
Attending Newly Diagnosed Days, or Coffee Mornings are very important in this case. You meet and greet others who are sailing in the exact same mental boat as you are. If your emotions take you one step further, don’t hesitate calling your GP or MS Nurse, or the MS Ireland Hotline. Feeling anxious or depressed can be difficult, but remember that you are not alone, so don’t languish in silence.
Silly enough, that was what I did last summer. I felt depressed, but didn’t want to admit I did. Since depression often travels with feeling self-conscious, I kept it to myself. Eventually the truth came out, and by expressing my feelings, I felt emotionally better already. What mattered most was that I opened up about this, and that subsequently others were able to support and help.
Following Lewis Carroll’s mindset, of course I was a different person the day of my diagnosis, and the many years that followed. Of course I’ve been on an emotional, mental and psychological learning curve that to this day, still makes me trip over my own two feet every now and then. What matters now, though, is that whichever emotion challenges me, I address it head on with the support of my family, friends, MS society and many, many others.
Whether it’s anger, depression, grief, denial, anxiety, fear, stress or hurt, check in with others and talk. Also, having a backup plan helps. I have a “Feeling Better Already” box with my favourite film or rugby game, chocolate, warm socks, poems, phone numbers of loved ones and some feathers from my duvet and pillow to help me remind that I need to relax and retire for the day.
Taking time out with the help of the FBA box helps settle my mind, and it feels like a small celebration each time I am on the way of conquering new feelings. Sometimes it also serves as a “Just In Case Box” when I need it most. And remember, it’s OK not to be perfect, and not to be OK.
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