Eighteen months ago, I felt invincible.
Eighteen months later, I despise my body. And I despise myself.
I’ve never been a writer, just a thinker. I just hope to actually put something down in writing will help me deal with this point in my life where I feel lost and all the emotions which accompany it. However, I guess like many people who write about a difficult subject or situation they have had to endure in their lives, I don’t really know where to start.
My life at the moment is a mess.
That sounds dramatic, I know, but that is how I see things right now. There are many reasons for why I feel this way. I won’t go into all of them (I don’t have the time or the energy right now) but I will touch on one of the main sources of pain, confusion, anger, upset and turmoil – my health.
For those of you reading this 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 where the insulating covers of nerve cells are damaged by the immune system and, at present, it has no cure. I would describe my overall ‘journey’ with MS as rocky but, up until around eighteen months ago, the best word I could use to describe it would be ‘manageable’. Perhaps one day I will go into more detail on my life with MS but for starters, I will focus on the last four years.
In 2011, a year after beginning on a new disease-modifying treatment for my MS, I decided to take up distance running to raise money for charity. I recall one, probably dark, probably cold, day in January registering for the Inverness Half-Marathon which I aimed to run in the March, which I hoped would be followed by the Loch Ness Marathon in the October. I had thought about it for months and months but didn’t know if I could ‘do it’ and kept convincing myself it was unrealistic. I guess now, I had to find out for myself. Place registered, fundraising began. There was no turning back…
When I was younger I despised any sort of distance running (and I referred to distance running as anything over 200 metres, by the way) which during cross-country running season made for several long resentment-filled weeks. Little did I know, that beginning something I previously despised as a youngster would put me on a path to some of the best, most fulfilling, experiences of my life.
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 of my MS diagnosis. I didn’t need to fear this disease anymore. I was in control.
Since that day in October 2011, I have went on to complete three more running events for MS Society Scotland despite several lengthy absences. An operation (for non-MS related reasons) in May 2013 affected my running for several months. However, when I returned to running in the summer of 2013 I have never felt better, both physically and mentally. I again, felt firmly in control. During October 2013, I completed my fourth and fifth events for MS Society and loved every second. I felt good about myself for the first time in my life. I almost (and I never do) felt proud of myself.
I felt invincible.
My running felt far ‘easier’ and far more enjoyable in 2013 than it did in 2011. After recovering from my operation, I resumed running in July, starting from a very low base of fitness but managed to build up to training, on average, four times a week. I say training, but I knew there were no events coming up that I would be ready to take part in as they generally cease from October to early spring time. However, I still enjoyed being back out there and being able to take a responsibility for my own wellbeing.
Every Sunday morning, after pumping my body full of a winning pre-run combination of porridge, golden syrup and blueberries I would set off on a long, slow distance run. Breakfast consumed, ‘CamelBak’ on my shoulders, I would off I went to pound the streets for a few hours. It became a routine. A hobby. An undoubted passion which I became, for the first time since beginning running, something I could do to shut myself off from any negativity going on in my life. I was inspired by myself.
For those two autumnal 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 than I had during my marathon adventure in 2011 and, during running, I was planning my running goals for the following year once I had recovered from another, forthcoming operation which was coming up in January. However, unfortunately, and unexpectedly, one day in November 2013 would see the start of a rapid decline in my physical health, and as a result, my mental health.
Since that day in November 2013 where, at my work, without physically exerting myself, I experienced chest pains coupled with a shortness of breath. My diagnosis ranged from costochronditis to pleurisy until there didn’t seem to be a diagnosis in the end. The mystery illness affected my eating habits, with it constantly feeling like I had food trapped in my throat, my stomach, or somewhere in between. This has been the trigger for a cascade of different symptoms in various areas instigating a swift depreciation from the ‘healthiest’ I have felt in my life, to complete physical and mental anguish and disheartenment.
I am not going to use this post to ‘have a go’ at some of the doctors and some people within the hospitals whom I have come across in the past year and a half even though I certainly have enough ammunition to do so. Generally speaking, the only advice I get from my GP is anti-depressant medication (which have had no positive impact) as, in his 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 related’ and certain other medical professionals who play a role in team ‘not MS related’. 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. Also, as I said, I am continually given excerpts from some doctors saying that what is going on at present is ‘not MS related’ which, that phrase in itself, makes me think that it could be temporary, be brief, be fixable. However, I never get an answer of what it is that is causing these feelings which, unfortunately, makes me think it is. As I type this, along with the hip pain and the back pain, my legs feel like two long lumps of lead with an aching heaviness with every step I take and also when I sit or lie down. I used to get this sort of feeling after running and I knew I would likely recover in a few days. To get my head around feeling this way without being able to exercise is proving so incredibly difficult. So far, I have spent money on physiotherapy sessions, osteopathic sessions and Hyperbaric Oxygen Therapy sessions to try and improve my health but, sadly, all have had very little positive impact.
In terms of my mental health, I do not deny that I have depression. I also do not deny that it is at a very high level. I know that there are several complex reasons as to why I feel this way but I know that my health is up there standing at the top of the ‘podium of woe’, in first position.
Three weeks ago, was the time where I truly realised the depths of my depression and how far I have fallen in the past months. 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 the hospital and headed to work with a tear-filled bus journey sandwiched in between. That, for me, was when the depths of my despair hit me. I had always thought for a long time before then that things were ‘pretty shit’ but I had never been forced to sit and think about it and come up with something positive in my life. When I stared blankly at the doctor, I knew that was it.
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 can not recommend some form of exercise highly enough if this is a viable option. 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 despise everything about myself. 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. I’ve, as you could say, ‘lost my mojo’.
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 sadness, the crushing melancholy that 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 ran 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.