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From invincibility to despair

This opinion piece is almost 9 years old
 

Stuart Rose was just 15 when he was diagnosed with MS, here he explains how fighting health problems and an inability to exerices has affected his mental health

Eighteen months ago, I felt invincible.

Eighteen months later, I despise my body. And I despise myself.

My life at the moment is a mess.

That sounds dramatic, but that is how I see things right now. There are many reasons why I feel this way but one of the main sources of pain, confusion, anger, upset and turmoil is my health.

For those of you who don’t know me, I was diagnosed with Multiple Sclerosis (MS) ten years ago when I was fifteen years old. MS is a chronic, unpredictable disease of the central nervous system. I would describe my overall journey with MS as rocky but until around eighteen months ago, manageable.

In 2011, I decided to take up distance running to raise money for charity. The 2nd of October 2011 will, until I get married (if I ever do…) or have a child (if I ever do…), be the biggest day of my life. On that day, I completed my second running event for MS Society Scotland, completing a marathon seven years to the month after my MS diagnosis. I didn’t need to fear this disease anymore. I was in control.

During October 2013, I completed my fourth and fifth events for MS Society and loved every second. I felt invincible.

For the next few months it clicked into my head that I was doing something that, with a fluctuating condition like MS, many unfortunately are unable to do. I wanted to push myself even further and I was planning my running goals for the following year. However, unfortunately, and unexpectedly, one day in November 2013 saw the start of a rapid decline in my physical health, and as a result, my mental health.

Suddenly, at work, without physically exerting myself, I experienced chest pains coupled with a shortness of breath. The mystery illness affected my eating habits and was the trigger for a cascade of different symptoms instigating a swift depreciation from the healthiest I have felt in my life, to complete physical and mental anguish.

I am not going to have a go at the doctors I have come across in the past year and a half. However, generally speaking, the only advice I get from my GPs is anti-depressant medication as, in their eyes, I am “looking to find anything that’s wrong with (me) to take (my) mind off having MS”. A magnitude of physical symptoms continue to be unresolved, and meanwhile I feel like a ping-pong ball being batted back-and-forth between team MS and other medical professionals.

The plethora of symptoms I have had, and continue to have, have culminated in symptoms which fill me with fear and trepidation – problems with my legs. I appreciate with MS, this could be the nature of the beast. However, this is not something I am able to accept right now and probably never will. I cannot imagine anyone would be able to.

Three weeks ago, while at a hospital appointment, a doctor said to me : “What gives you pleasure in life, Stuart?“. I was dazed, unable to think of a response. My head was completely blank. I sat frozen for around fifteen seconds trying to think of an answer. Nothing came. I looked back at the doctor and muttered, “I think that says it all“. I walked out of the hospital and headed to work via a tear-filled bus journey. That, for me, was when the depths of my despair hit me.

I feel like a ping-pong ball being batted back-and-forth between team MS and other medical professionals

I can not recall ever feeling as low as I do right now. I try to emphasise to people that this stems from my poor physical health and my resulting inability to exercise. I realise now the incredible gains I acquired from regular exercise and the resulting, much-needed, boost in self-esteem. Running simply made me feel good about myself. It made me feel like I had some form of control over what was going on in my life. It gave me hope.

Now eighteen months later I have a deep-rooted anger inside of me which I cannot seem to relieve. An anger at the abandonment of the medical professionals who are meant to assist me but, if anything, have been in the driving seat as I have hurtled towards this dark, dead-end I find myself in. I have lost a sense of purpose. I’m permanently uneasy. I’m never content. Everything feels like a chore.

Despite living with an unpredictable disease, I never could have predicted such a swift decline in my health. I am struggling to deal with the crushing melancholy that comes from knowing I may never experience the emotion and euphoria of completing a running event again. That is, amongst other things, something I cannot accept. Perhaps that is a character flaw, perhaps that is an understandable reaction to the hand I have been dealt. You decide.

One thing I do know is every single day I think and I dream of experiencing these highs again. With MS, and its fluctuating nature, who knows if that is achievable. I could have run my last mile. I could have many more miles left in my legs. I just hope I can go to where I want to be. A place where I can be happy.

Eighteen months ago, I felt invincible.

Eighteen months later, all I want is to be understood, to be helped and to be content.

This is an edited version of Stuart Rose's blog about his experiences. The full article is available on Stuart's Wordpress blog site.