Out of Air

I’ve racked my brains for ideas of what to write. Sitting alone in my kitchen infront of my laptop, lying alone in my bed, relaxing alone in my living room, sitting alone in the silence of an empty house. Alone with my thoughts. Alone, with my fears. Alone.

Alone.

I like being on my own. I like my own company and can think of many a worse way to while away the hours than burying my head inside headphones, enjoying a cup of tea and watching the world go by. I have spent many an hour doing just that, and would often look forward to and savour such opportunities, those chances to escape from the business and repeated demands of everyday life.

But these moments take on a different meaning when they cease to become moments, when they cease to become an escape from everyday life and instead become everyday life. When being alone is no longer a choice that we make, but a fear we must face.

It scares me to admit that I get lonely. That I am lonely.

As my fingers type out the words ‘I am lonely’ my mind seeks justification and prepares the case for the defence. ‘I am not looking for sympathy’, ‘I don’t want you to think that I’m some sort of ‘saddo’’.

Because it is hard to write ‘I am lonely’ without a sense that it translates to ‘I am needy. I am weak’.

I have met some good people in the last few years, and I’m fortunate to live in an age where I have been able to virtually meet many more. We are able to connect and communicate with others more easily than we ever have before. But when the message alerts are quiet, when the notifications stop, the silence rings it reminds me of what I miss. Someone special. Their smile. Their laugh. Their care. The hundreds of little things that add up to the biggest thing – that one person that will always be there for you, no matter what. Someone to laugh with, to make plans with, to dream with and to share your inner self with. Someone to unlock the parts of you that otherwise lie dormant, to whom you can offer the gifts of your best self.

But. I do have a friend.

A poisonous friend.

When she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if I’m lured into a sense of security. She follows me everywhere, every day to the point where I honestly cannot remember a time that I lived totally out of her clutches.

We spend every single day together. We are inseparable.

She is cruel. She cares little for family occasions, social events or my job. She forces me to stay at home, to add to that ever-increasing loneliness, but also makes sure she is right there with me, ensuring I don’t forget her presence for a moment. She’s been a silent witness to some of the best and most agonising moments of my life.

She’s always here.

But you can’t see her.

You probably do not even know she exists.

She wrecks lives. She destroy happiness. She tears relationships apart, shatters dreams. She stops careers in their tracks. She empties my bank account. And, not to forget to mention the daily, physical pain she brings.

One day she may even take your life from you.

Her name is Pain.

There are many who live with her, just like me. We do our best to keep on living despite her constant presence. It doesn’t matter how long you live with her, you never become immune to her. Yes, we learn to continue our lives, even the mundane, daily stuff that keeps it ‘normal’. Yes, we smile, laugh and make jokes. We chat, shop and eat, despite the anger it causes her to display, and we relish and appreciate the simple joys. They all make life with her worth living.

But let me tell you a secret. It hurts. It never stops. You wake, it hurts. You rest, it hurts. You do some basic physical activity, it hurts. You eat, it hurts. See, constant and chronic pain isn’t something you magically get ‘immune’ to. If I kicked you in the shins wearing a pair of boots every ten minutes, you would not be desensitised after the hundredth kick, would you? You don’t get magically used to pain.

Let me tell you another secret. Despite what one physio said recently (within five minutes of first meeting her…) I don’t have a ‘low pain threshold’ and neither do the vast majority of others in my situation – those others I know and respect who suffer daily alongside me. Quite the opposite, actually…

Over the past three years, I have been living with chronic pain in almost every part of my body along with many, many other new symptoms, including significant altered sensation in my legs. The cause? Unknown. Despite no progression on my MRI scans for several years, many health professionals insist the cause is my Multiple Sclerosis (MS). Some on the other hand have recently began investigations into ‘myositis’ and ‘myotonic muscular dystrophy’ by regularly testing levels of ‘creatine kinase’ in my bloodstream – an enzyme released into the blood with muscular damage. Next week I will have a repeat CK blood tests followed by nerve conduction studies in order to see if these potential diagnosis’ are confirmed.

Normally, pain is your body’s sharp and intense warning that something is wrong. You are meant to feel it, and the amount of pain allows you to determine how serious the injury may be. With chronic pain, the pain is no different. It screams at you to notice it. It punishes your heart and mind with its incessant demands to be noticed and treated.

All of this feels like a lifetime ago…

So that’s the next secret I have for you. Despite often hefty pain-relieving medications, pain is diminished to the point that we can push through it and attempt normal function, but she is still right there.

Please, the next time you think to yourself about someone with chronic pain, that it can’t be ‘that bad’, that we are being hypochondriacs or that we are just being a baby or just trying to get out of something, give your head a wobble. (Please).

Here’s another secret. It’s rare for someone who lives with pain to actually tell you that he/she hurts so badly he fights the urge to bash his head against a wall, or scream, or just cry about the unbearable unfairness of it all. While you look on, we protect you from our pain. “Nah, it’s fine. Just a niggle.” “It’s OK, I’m just a bit sore.” Or the automatic response, “Fine thanks, how are you?”

We learn fast. To tell you of pain, and the misery she brings, often eventually creates anger, resentment, ill-treatment, and impatience. At first it’s all sympathy. But I don’t want that. Empathy. That’s what I need. Not the (not-very-discreetly) rolled eyes and mutterings. This is why I protect you. Because to one who hasn’t experienced chronic, disabling pain, to show that I hurt appears to diminish me, to be a weakness, a failing. It’s humiliating to justify my pain, so I seldom choose to do so.

The best thing that you can do for a friend or loved one who also lives with pain is to realise that pain hurts. If we are exhausted, sore or unwilling to do some activity, it’s because we hurt, badly. Even at the moment that you helpfully attempt to change the subject, that hurts, too. When you chat about your toe or that sore back you had once, you diminish our reality and you diminish your capacity to hold anything nearing empathy for us. Instead, ask what you can do to help. Or say truthfully, “I don’t know how that must feel, but I’m here if you need me. I believe you.”

Remember that I invariably almost over-respect any pain that you have. I will often fuss relentlessly if you are even mildly sick or hurt, because your pain is one that I feel I can help, unlike mine. Most importantly, here is the final secret I will share with you…

Pain moved in uninvited. We didn’t ask for her or welcome her. She is something inflicted on us entirely against our wishes. So please don’t punish us for something we have zero control over. And learn to listen to us, and hear what may be underneath our “just a bit sore” and “I’m fine”. That means more than anything.

Recently, my hope gradually faded as my pain and discomfort continued despite the numerous treatments I threw (and continue to throw) money at. In fact, it got so bad that I became overwhelmingly depressed. A thunderous black cloud followed me around no matter what I was doing. Despite having a loving family and a contact list full of people to talk to, I struggled to find anything to be happy about. Pain, discomfort and depression blanketed me constantly. It became so difficult to do even the simplest of things. Finally, I found rock bottom, I no longer cared about anything and I had just about given up.

For me, the image above truly illustrates how chronic pain feels. The picture is almost too much for me to bear because it does not just demonstrate what physical pain feels like but also what emotional pain feels like. What was the first thing you thought of when you saw this image? For people who are in the depths of hell with their physical pain most likely thought about the daggers that run through their body all day every day with no relief, not even when they sleep. For those without chronic pain other emotions may come up such as: feeling trapped, strangled, stuck, hurt or desperate. It is almost impossible to describe to a person what chronic pain feels like but as the saying goes, a picture says a thousand words. Imagine feeling that you are stuck in between sharp metal that is ripping your body apart and how horrible that pain would feel. Imagine that feeling of severe pain is close to impossible to unravel as the picture above illustrates. The man in the picture is trapped inside this horrible pain: that is what chronic pain feels like.

I’d love to know how long others could last in this twine of pain? Maybe longer, maybe shorter? I lasted about two years (roughly) but by the third year I gave up and came way too close to ending my own life.

I didn’t want to die. But I didn’t know how I could continue to live. Because I wasn’t living. I was surviving, from minute to agonising minute I was merely surviving. But to no end. Dr Gordon, my psychiatrist, asked me one day that if there was a ‘delete button’ would I press it? A button to hit with the promise that I would go to sleep and never wake up. Would I have pressed it?

In a heartbeat.

But that’s just selfish, isn’t it?

Imagine. For a minute, try to imagine just how bad things must be for the person that he or she makes that ultimate choice. It goes against every instinct that we have. The strongest instinct that we have is to survive. How does this happen?

I have received a lot of comments on my previous posts with many praising me for being brave in sharing my thoughts and feelings in the way that I have. Such feedback is always a pleasure to receive and it means a great deal to me. But to be honest, doing this has never felt brave.

But this post is different. This is tough. This is uncomfortable. And that’s why I feel that it is important that I write it. Why is this post so difficult for me to write? I have written very openly about my struggles with depression but this feels different. I have always sought to be open about my struggles and based on my openness surrounding my MS, I feel something of a responsibility to try to help others by challenging the stigma and misunderstanding that exists around the illness.

And make no mistake, depression is an illness.

At its worst it is an all-consuming, torturous, desperate, lonely, terrifying illness that has the power to strip you of your very sense of self, to crush your self-worth and your dignity as you try and fail to face the obstacles, both real and those that are perceived in your damaged mind, of everyday life. Depression closes around you like a prison and from within its walls it is all but impossible to conceive of a way to escape. You are no longer you, and it is incredibly difficult to comprehend just who and what it is that depression has turned you into.

At its very worst depression offers not a single moment of respite from its cruel grip, the physical sensation of your head trapped in a vice with a storm of terrifying thoughts constantly battering your mind, shaking, sweating, losing the ability to think and speak coherently, and the ability to spontaneously smile and laugh cut from your being. And this suffering can persist, unrelenting, for months. And so, exhausted, the only safe place appears to be beneath the covers, where we find one final cruelty as our ability to sleep is lost.

Whilst it is impossible to conceive of unless you have experienced it, by writing about it I hope that more people can at least open their minds to the idea that depression is a real and serious illness. The sense of disconnection from others and, critically, from yourself makes depression, as I mentioned earlier, a truly isolating and lonely experience.

When this has been your experience for months or more (and it has) all you want is an end to your suffering. Nothing else matters. Nothing. One of the hardest truths of this cruel illness is that it robs you of the very thing that you need to survive it: hope.

Family and friends do their best but whilst they can visit the sufferer in their prison they can’t break down the walls. They can’t provide the key. Only the sufferer themselves can do that, but the love, support and care of others, including qualified professionals, are an essential part of the treatment. And I hope when the depression passes the bonds of love and friendship can be stronger than ever before. When depression strikes with such brutality all you want is an end to the pain. That is all. And no matter what else you have in your life, the only thing that you can feel is the pain and anguish that crushes your soul.

And this is how depression kills. Not because the person wants to end their life, but because they want an end to the unbearable suffering. But there is no end. To the sufferer, there is no end and there will be no end. Not just for them, but for the people that love them and care for them who are helpless in the face of depression’s onslaught as it robs them of the person that they knew. So leaving does not feel selfish but an end to the burden, for everybody.

“The pain of severe depression is quite unimaginable to those who have not suffered it, and it kills in many instances because its anguish can no longer be borne. The prevention of many suicides will continue to be hindered until there is a general awareness of the nature of this pain.”                                                                                                                                      

– William Styron

But, despite being consumed with thoughts of little but ending the suffering, I couldn’t do it. I felt weak. Weak that I couldn’t do the one thing that would end the nightmare for me and those that cared for me.

I promised myself, in the aftermath of this, that I would be more open with how I am feeling, even if it is through this method at least to begin with. I’ve been honest. Ive shared the ‘good’ moments – when I managed to get out for a run for example or receive some positive news but I also feel it important to document these lows too. Life at present is full of lows and, as much as I want to remain positive, it is the harsh reality.

I’m so angry right now I don’t know whether I want to scream or cry. The anger seems to rise up in my throat as my hands shake and my heart races. I am not the sort of person that experiences blinding rage very often so it’s almost terrifying to experience it now. But what I’m feeling at the moment is more than just anger. I’m feeling so many things right now: a horrible combination of denial, fear, depression, despair, and the most unpleasant physical sensations to top it off.

I’m absolutely broken. I’m feeling absolutely exhausted both physically and mentally. I’m feeling weak. Delicate. Fragile. But I have been in pain so long I am stoic.

But how can you be in pain if you’re not screaming or writhing or crying?

Well I am.

I am stillness. I am quiet.

I am holding it in for fear it will erupt.

If people could just reach into my body, my soul and touch that pain, feel it as if it were their own.

Then they would know.

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Running up my spine
Hanging in my veins
Stirring up my mind
Bending ‘round my waist
Pounding on my chest
Falling through my hair
Till I’m out of air

Broken Twin – Out of Air