Words Are Not Enough

Some days, I can feel everything at once. Other days, I can feel nothing at all.

I don’t know what’s worse: drowning beneath the waves or dying from the thirst.

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I’m not feeling great at all.

It’s mid-afternoon. I’m slumped in the corner of the soulless café at my local hospital watching the world go by. Pen in hand, needing to transfer my feelings from mind to paper with the irritating sound of coffee machines and conversation jarring in my head. Happiness is everywhere. Or so it seems. I’m watching people bustling along, seemingly happy and content, while I sit in what feels like an isolated mental bubble. My mind feels like it’s on fire. So many thoughts, feelings and emotions in need of release but not the ability to put them into words. Twenty minutes pass, I manage to finish my lukewarm drink but the paper beside me stays empty. And I could not have described it any better.

For those reading this who either don’t know me or have not yet read my previous posts, twenty long months ago I was not like this. I felt physically strong, mentally in control with credit, in a large part, going to the escape I found through distance running, which I began in 2011. Don’t get me wrong, I was hardly ‘swinging from the rafters’ as I have, for as long as I can remember, been prone to bouts of low mood but taking up running gave me more than I could ever have imagined. Being diagnosed with Multiple Sclerosis at fifteen years old was a blow to say the least but I had finally found something that made a positive impact on my life and the lives of others through the fundraising that followed. I had a purpose, I had drive and motivation to achieve things that I would never have thought were realistically possible. Right now, I have none of this left in the tank. Things, these days, both in my body and my head, feel so, so different.

Physically, I continue to be plagued by a catalogue of symptoms many of which have a proven mechanical cause. To name a few, I can accept (or should I say, understand) that I have acute lower back pain due to a herniated disc, that I have sciatica crawling down my right leg due to ‘piriformis syndrome’ and I have persistent hip pain due to one side of my pelvis being smaller than the other. These all make sense. There is a cause. It’s logical. I like those rare occasions when things make sense. There isn’t enough of that these days.

One of the most frustrating things is that I cannot get my head around my legs. I’ll rephrase. What I mean is I am still no closer to finding out why both my legs feel a dead, tight, heavy pressure which has plagued me for the last year and a half and made a return to running, or any heart-rate heightening exercise, unachievable. I continue to, however, be told that, despite there being no new lesions in my recent MRI scan, these ‘new’ symptoms are MS related. I’m thoroughly infuriated with the consistent decline in my mind and body and mystified by the mixed messages I continue to receive from health professionals and the several ‘stab in the dark’ style misdiagnosis’ on the way. I feel confused. I feel weak. I can hide it though. I’ve managed, in the most part, to disguise how drained I have felt over these last couple of years. That’s a positive…

Or is it? A few days ago, I was privileged enough to step inside 10 Downing Street for a reception with the MS Society as a reward for my fundraising efforts for the charity since 2011. I’m stood there, sinking endless glasses of white wine making polite conversation but hoping no one will ask about what I have done to be invited to an event like this. I’m uncomfortable. My ‘story’ is relayed from person-to-person and I am congratulated for my achievements and, inevitably, I hear the ‘I’ word which, these days makes me feel so uneasy.

“You’re an inspiration”.

I smile nervously, say thanks and bury my face back into my glass and hope that another sip can switch the focus of conversation off of me. Just like my glass, my self-loathing is topped-up again and again.

The room feels too small; the number of people too great. It’s noisy. Smiles and laughter all round. I’m doing the same, to be fair, but mine is painted on over a deep unhappiness and a desperate longing for things to be different. One of the loudest voices in the room is my own mind. The internal chatter in my head is deafening – two voices within one person constantly debating and arguing.

“You should be here. You’ve raised almost £38,000 for this charity. You have tried, as best you can, to raise awareness of MS”.

“You shouldn’t be here. You haven’t been able to handle life for two years. People are inspired by the old you, not the current you”.

The overwhelming, louder voice wins. You shouldn’t be here.

I’m stood inside one of the most iconic buildings in the world feeling like a fraud. In my opinion, ‘inspiration’ is a word that is so lazily overused these days but, despite not allowing myself to hear it at the time, perhaps the Stuart circa 2011 to 2013 was inspirational. For people to still be ‘inspired’ by me these days, particularly when I basically, as the voice in my head told me, cannot handle life at the moment makes me sick. I try to tell myself I’m privileged to be standing here but ‘that voice’ wins again. This does not mean I’m ungrateful for the invitation, in fact, the absolute opposite. I’m so appreciative, but I do not feel I deserve to be there taking someone else’s place.

Eventually I get home to Inverness and I want to switch off. I’m tired, I’m cranky and I’ve had a realisation that I am severely depressed. Far more than what I realised or, perhaps, was willing to admit to myself.

Depression is, like another certain word, a term that gets thrown around way too easily. Lots of mentally healthy people will claim to be depressed, when really they’re just experiencing what are normal human emotions, and they’re back to ‘normal’ fairly quickly. These people don’t truly suffer the immense emotional pain and huge energy drain that depressed people do. They don’t understand that it’s not “I don’t feel like getting out of bed today”, but instead when you are depressed it can often take every bit of willpower you can muster just to get up to go to the toilet. A lot of these people think depression is something that can be cured by a bar of chocolate and a day on the sofa watching a funny film…

Of course, anyone can feel a bit down or tired for a day or two – stress at work, late nights, whatever but that isn’t clinical depression. You can ‘snap out’ of a rubbish afternoon where you’ve accidentally deleted that urgent file you’ve been working on for a week. You can’t ‘snap out’ of clinical depression; the kind of hopelessness that builds up inside and can feel like an expanding black hole. Depression is not about being happy or sad. In fact it has almost nothing to do with happiness, or lack of it. It is about hopelessness and despair. A very different prospect to feeling ‘a bit sad.’

The best way I can describe depression is to liken it to an oil. A thick, black oil. On a good day, you get one or two drops staining your clothes and you brush it off and continue as ‘normal’. On a bad day, it swamps you, it engulfs everything, and you have to fight to keep from getting submerged and drowning. As time goes on it gets harder and harder to fight, it takes every ounce of your willpower just to keep going. The oil becomes so tempting, so thick, so black, and so easy just to relax into and disappear.

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My own brain is constantly chatting. It’s relentless. A flood of emotions on some days and complete numbness on others. That voice does not give you an opportunity to think straight, to focus on work or even the most basic tasks. It just keeps on talking, at pace, until you can manage, if you’re lucky, to fall asleep at the end of the day. The headaches never seem to leave, you just try to ignore it until you can’t ignore it anymore and you find yourself in a bathroom, bedroom or behind a wall releasing all that emotion quick enough so nobody will notice. Then you’re ok for a while. You let it out, all that pain and worry, and you’re stable. You’re fine now. Until it happens again. It could be five minutes, five hours or five days. Like the calm before the storm. Will the next storm be a light bit of rain with a rainbow or will it be a tsunami of never ending sadness you can’t control, not knowing where it came from or why it came? You can’t breathe. You can’t even speak. Slow down. Why are you talking so fast? Slow down. There is nothing you can do to control the shaking, the worrying or fear and you can’t think of anyone to contact despite having a social network and a contact list full of names and numbers bursting at the seams.

Why would you want to burden them? They don’t care. They’re busy doing their own thing. Sure, they say they’ll be there, they’ll always be there, right? If you ever need anything, they’ll be there. Isn’t that what they say? Whatever. You can already see them laughing about how pathetic you’re being. You’re just attention seeking. You’re a mess. You don’t want to burden anyone anyway, so it’s all good. They’re all busy. Look at you, you’re just a loner. You’re being dramatic. You’re just being weak and need to ‘man up’. That’s what they’ll say…

Despite writing this for the world to see, a lot of my friends do not know what is going on.  Deciding who I tell has been a particular, and sometimes surprising, selection process.  Some people who I thought wouldn’t ‘get it’ turned out to be the most useful and understanding. But, until now, I have only told a very, very select few. One of the reasons is I am ashamed. I hate feeling fragile, feeling like I’m a failure and that I often cannot cope with the most basic of tasks. That’s what I don’t like about being this open. I feel exposed, ‘baring all’ and as I sit here every word I type pains me but I find it so tough to describe how I feel and this is the closest I’m getting. I hope that, eventually, writing about this will be a release and can give me some sort of peace.

Some of the causes of my depression are obvious. Being diagnosed with a chronic illness since childhood would, I would imagine, test even the strongest, most resilient individuals. As I said I know I have, for as long as I can remember, been prone to periods of unhappiness, insecurity and worry but my emotions now are at a whole new level. So far it’s prevented me from pursuing a career, going to university, or from thinking realistically or constructively about my future in most of the normal ways. It’s held me back in relationships, been a burden on them, and made me unwilling or unable to commit. It’s worn down my self-image. It’s prevented me from getting any pleasure or pride out of many things that used to give pleasure and pride so easily. It’s sucked all enjoyment and activity most days of my week, and most hours of my day.

There is no doubt in my mind that these feelings have accelerated rapidly in the past two years. And the catalyst behind this has been, without question, my decline in physical health. For so long now almost every waking moment has been shadowed by this inescapable feeling of failure and worthlessness; that I’m too weak to deal with problems that a lot of other people face every day, and that I deserve to feel like this.

My drive and focus have left me. The regular dose of adrenaline and satisfaction I used to get from running has gone. Running, particularly at this time two years ago, used to make me feel ten feet tall but that all seems a distant memory now. I have come to dread a sport I once adored. My life feels pointless.

The physical pain I feel, coupled with the indescribable feeling in my legs, consumes me every single day. My leg symptoms are supposedly MS related according to my neurologist despite no new or active lesions in my brain or spinal cord. However, since I last saw him in March he seems to have changed his mind on the cause of my symptoms more than he has changed his socks. Like I said, his current stance is the feeling that my legs are going to explode is to do with MS and I have to learn to accept that. As you can probably tell; I can’t. It doesn’t quite seem to add up. I tell him that exercise, of which these days consists of walking to work and a bit of swimming on a ‘good back day’, is one factor which aggravates the feelings in my legs. I question a blood flow issue, I question ‘compartment syndrome’ and other things that have been suggested to me by various people but all fall on deaf ears. Right now, I do not know if this is something non-MS related and potentially treatable or if it is, despite the lack of evidence, MS related. Either way, my decline in physical health and inability to exercise has shattered me more than I could ever put into words.

These days I hate watching sport on television. I have, as you can probably tell, this unending desire for the past, to which I cannot bring myself to watch running or most endurance sports on the television. I hate being outside and seeing someone running. I’m jealous. I’m angry. I’m fiercely nostalgic.

I’m dosed in negativity. It is manipulating my thoughts and, as those who know me well know all too well, I spend my time moaning about a sport I had learned to adore and that I was able to give so much through the charity fundraising which ran alongside me. I cannot accept it is over. Until proven otherwise, I will always want to pull on that orange vest again and cross another finish line. Right now I, or even the medical professionals it seems, don’t know if that will be possible. I could have no miles left; I could have many. Every day, despite this dark valley I find myself in, I hope to be able to achieve my goals and make people proud of me again.

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October, 2013

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For some reason nothing has been able to match the feelings I had from running. Maybe I was too emotionally attached to it; maybe I invested too much energy into it, both physically and mentally. It became the first thing I thought of when I woke up and the last thing that crossed my mind before I went to sleep. My dreams were often entangled with it.

The problem is I have not been able to match the feeling and satisfaction it brought me. It’s like being taken to a theme park as a child and being allowed to go on the most dangerous and thrilling ride only to be told after just one go that you have to stay on the dodgems from now on. I was lucky enough to experience that rush, that extreme high and, to my detriment, I feel nothing else can compare to it.

A few months ago, I attempted to resume running again after going through an intensive core-strengthening pilates and yoga hybrid I had found online. I hoped that I was ‘fit’ enough to run again but I was proven wrong. Every day for the following five days I had another go at running but, as the week progressed unsuccessfully, I became so desperate for it to go right, so driven by the annoyance and fear of my body not allowing me to, that the resentment I felt inside began to express itself physically. My frustration and anger was so intense.

I had never experienced frustration like this before. The following week, after finishing work, I went to the swimming pool which, normally, I could use to relax physically. This time, I made sure that no one else was around, lowered myself into the water until I was completely submerged, and then I let out a scream of total frustration. I came up for air and then submerged myself again and screamed again. No words, just pure desperation. I carried on screaming as long and as loud as I could and I didn’t stop until I was hoarse. I simply could not find any other way of dealing with the pain and non-stop barrage of thoughts and negativity.

Eventually, I got to a point where I felt I couldn’t escape. There was simply no way I could concentrate enough to even read a book. My mind was totally preoccupied with anything it could find that was negative and destructive; and it caused me to feel panic and my heart to beat quicker. My thoughts started to drive downwards, tossing endless dark, nasty images through my head. All I remember was looking at the bottom of the swimming pool wishing for a giant plug hole to open up and swallow me. Anything to get me out of the living hell I found myself in.

That voice was whispering in my ear again; asking me what the hell I am doing here. It has asked me that question so many times recently. Still no answer.

Depression has made me ashamed, even disgusted with myself and who I’ve become, as well as with other people and often the world itself. It seems that every attempt I make to haul myself out of it (exercise, hard work, will-power, using every shade of denial), leaves me so wound up that I exhaust myself right back into depression, leaving me with no way up or out of the hole, yet so many inviting ways to go just a little further down.

I feel trapped. I feel like the ‘train of life’ is passing by and the only thing I can do is look at it.

Fear.

Doubt.

Despair.

Insecurity.

Regrets.

Instability.

Disappointment.

Suffering.

Sadness

Sorrow.

I know it all. I need to get rid of them. I’ve tried everything.

I ignored it. I drank.

I tried physiotherapy. I visited an osteopath. I saw a chiropractor. I started ‘Hyperbaric Oxygen Therapy’. I tried a massage therapist. I went to a ‘Bi-Aura’ therapist. I read strength programmes. I attempted ‘ACMOS Energy Balancing’.

I tried medication. I visited a counsellor. I saw a psychiatrist. I started hypnotherapy. I tried mindfulness. I went to a psychologist.  I read self-help books.  I attempted meditation.

As I lie in my bed on this September night I think about what a counselor said to me recently and playback the conversations in my head. I see the jar she drew on a card beside the desk where we sat. I see the first line she drew towards the bottom of the jar — the point where a normal person’s emotional content is meant to be. Then I can see my level a few centimetres above it, worryingly close to the brim.

From my view, life is hard. Every day where I am near or in a black patch, I struggle to get out of bed. You all see such a pretty, colourful and caring world yet I see a roaring river crashing over a waterfall with me clinging on the rock face struggling to survive. That’s the thing about depression. A human being can survive almost anything as long as they see an end in sight. Depression, however, is so sinister that it is impossible to ever see an end. It’s just a long black hole.

One of the hardest things of all, and what led me to write this, has been tagging myself with the label ‘depression’, without wanting to accept or believe it. After years of living as a depressive, I still haven’t truly decided whether to view it as an illness or as part of my personality — often I see it as something feeding on me, and me on it. It often feels like a disability, mainly because it’s one that I carry secretly, that I still feel has a stigma attached to it, if only in my own head.  A disability I could, until now, tell no one about unless I trusted them.

As I’m sure you have seen on the television, or read in a newspaper, the benefits of physical exercise for mental health is well documented. Until I began running in 2011 I didn’t have anything that gave me an escape from the bad days but I knew that, at the time, I would return to ‘normal’ after a few days regardless. I miss everything about those three years – the escape, the motivation, the achievement. I miss feeling physically well. I miss the happiness. My hope is that you will read this and understand how important your physical and mental health is. They both can hit you with anything from a bump you can step over to a roadblock you cannot get through. If you can, use yours in every way as time can be precious.

There is a fear about publishing this post, partly brought on by my own fears of the reaction. To reach deep inside myself, pull out my heart and slap it down onto the internet has been one of the most difficult things I have done and, if I am being honest, still doesn’t quite feel the right thing to do but I need a release in some way and hope I can find that here. I fear when I see people again – the overly sympathetic, pitying looks. The fear of being treated differently, the fear that I will now be seen as even more of a weak link, be seen as ‘not up to it.’ I do wonder if writing this could be more stressful and counterproductive than not. But, now I’ve closed my eyes and hit ‘publish’. I’ve done it now.

For anyone who hasn’t experienced these sort of feelings before (and it feels, right now like I’m the only one) you may not be able to fully understand them, and that’s ok. But if you know someone who has, I urge you to treat it like any other sort of illness. Ask if they’re feeling better, say it’s good to see them and then get on with it and treat them like you always have.

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“Be kind, for everyone you meet is fighting a hard battle.” – Plato

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