Blurred notes to self

10446626_493205107477168_3492364098128049118_nSunday evening, as always a short look forward to the coming week, and a long goodbye to the past three weeks. There’s the usual MS fatigue and some added black-and-white-being-fed-up always having to repeat myself. In other words, today has been, and still is, all about ‘out with the old, in with the new’ but not before letting off some steam.

In a recent post for the blog of the Irish MS society, I used one of my favourite quotes by Lewis Carroll, “I can’t go back to yesterday because I was a different person then.”

I wrote about being a different person pre- and post-diagnosis. Being diagnosed was a super-charged emotional rollercoaster ride, the ride hurdled forward by the passing away of six family members (including my only sibling, Nana and stepdad) the following 3.5 years and by turning single again. Let’s just say that before being able to get up and crawl on my hands and knees, I was knocked sideways again, six times over.

In the end, it didn’t matter how I got through it, the result was that it made me stronger than I ever imaged myself being. Being strong doesn’t however equate to always being chirpy and seeing and hearing continuous pastel birds fly around my head. Everyone’s allowed to get cross for whichever reason. If or when the reason is valid enough, we contain the situation, talk it through and move forward. If you happen to live in a healthy body, you go to bed, sleep on it and wake up refreshed the following morning.

Contrarily, add issues on the home front, professional and personal stress to the unpredictability of living with MS, and you get a vault of emotional challenges that will try to test you every day. It’s very, very important to add that in MS, emotional challenges are not always caused by negative, outside events, as MS itself can be the trigger.

MS, being a physical illness of the brain, spinal cord and optic nerves, can cause damage on these parts, and hence create behavioural changes (and challenges). Also, side effects of certain medication like steroid treatment can also be a reason why your attitude 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. If or when you’ve been living with MS for a while, and you find yourself feeling emotionally challenged, having to face up to your emotions can be a stumbling block. It’s necessary to sit back, take stock and look for help.

If you’re lucky to live in an area where an MS society is active, joining them on Newly Diagnosed Days or Coffee Mornings can be a real help. If they don’t organise these, perhaps you can ask them to help you plan such events. You meet others who are sailing in the exact same boat as you are. If your emotions take you one step further, don’t hesitate calling your GP or MS Nurse, or perhaps a hotline for people with chronic illnesses or hospital. 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.

Having a backup plan also helps. I have a “Feeling Better Already” box with the name of my favourite film or rugby game, some chocolate, warm socks, poems, names and contact details 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 feelings. Sometimes it also serves as a “Just In Case Box” when I need it most, and for those days I just want to see my qualifications, advocating efforts and meetings. It might not help me, but knowing others can reap the rewards, is all I need to know.

And remember, it’s perfectly OK not to be OK.

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

3 thoughts on “Blurred notes to self

  1. you are becoming adept at so many things.! always two sides of the coin…sounds like an awful lot of losses in a short period of time.. so glad you made it through… Who knows how much better things can get… ?

  2. It is absolutely OK not to be OK! I found myself getting more muscle fatigue recently, said to myself “this is ridiculous”‘ and in the next breath said to myself “remember, you have Multiple Sclerosis!’ And gave myself a break… I am a retired Health Care Professional, I know the theory, but somehow when it’s you, you think you are different, and immune!!

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