DISCLAIMER Before I start, I’d like to get a few disclaimers out of the way. Firstly, I am not a danger to myself or others. Secondly, as with any posting I do about mental health, I know this will cause some of you to see me differently. I'm trying to accept that. However, I ask that, if you haven't already, please do not treat me as fragile. I do that enough to myself as it is. TRIGGER WARNING : Suicide
Just outside the back of my home there is a grass path that, within just fifteen minutes, will lead you down to a stunning panoramic landscape. I used to love this place, particularly in the summertime – the clear water, the rolling hills, the quiet road, the beautiful sunsets all, more often that not, accompanied by sound of my feet slapping the tarmac beneath me. Some of my happiest days were down there; the times where my foundations were built. The days I wanted that one road to just go on forever and to run it forever.
Beginning running in 2011 unexpectedly opened up these experiences and let me have the opportunity to find some place of comfort despite the every day challenges of living with MS. Somewhere that I could find the peace that I craved and a place where I could deal with things. The scene of my biggest challenges, but also my greatest achievements. The days I could inspire not just others but, more importantly, inspire myself. Those invincible days.
It’s now May 2017. 1:39am.
I’m sat writing this on the floor of my bedroom, my feet submerged in ice-cold water, pain bursting throughout my body. I glance up, my bookcase calling me out of the corner of my eye.
‘Relentless Forward Progress’. ‘Keep on Running. ‘Help Yourself’. ‘Paying the Price’. ‘The Man Who Couldn’t Stop’. ‘Reasons to Stay Alive’.
Reasons. To. Stay. Alive.
A question I have asked myself almost every single painfully long minute of every single painfully long day for the last three painfully long years.
Today, it really, really hits me.
Despite the freezing sensation seeping up my legs I can feel the sweat pulse in my hands and the sticky perspiration form on my forehead. I want to cry. I need to cry.
Not one single tear.
Loaded with emotion but empty of tears. Absolutely overwhelmed with everything and everyone.
I collapse into bed and wish not to awake.
A common theme.
As I have written about previously, since 2013 my physical (and mental) health have continued to deteriorate at an alarming rate with a bombardment of new symptoms appearing almost daily. My new symptoms could genuinely, and comfortably, fill a page or three.
Pain in my tongue, pain in my eyes, pain in my throat, pain in my shoulders, pain in my arms, pain in my hands, pain in my ribs, pain in my stomach, pain in my groin, pain in my hips, pain in my back, pain in my thighs, pain in my knees, pain in my calves, pain in my ankles, pain in my feet.
Nerve pain, muscle pain, joint pain.
Soul-destroying, mind-numbing, energy-sapping, pain. And then there is the rest. Nausea, fatigue, ‘brain fog‘ and the most unpleasant dead, heavy sensation in my legs to name but a few.
Add all that to the multitude of other symptoms and not surprisingly depression is swamping me and sucking every last drop of life out of me with each passing day.
I genuinely feel like my body and mind are slowly dying.
Having now lived with MS for almost half my life it is understandable to assume that these new issues are due to this. Not for me, however, or, finally, my neurologist.
Since beginning on Tysabri, a disease modifying drug for ‘highly-active’ relapsing remitting MS, over seven years ago there has been no progression on my MRI scans (the only change has been a herniated disc in my lumbar spine and degenerative disc disease in both my neck and lower back, but zero lesions in my spinal cord whatsoever). So ‘MS wise’, nothing new and nothing active. However, despite lack of ‘anything going on’, my quantity of new symptoms continues to escalate.
Last year my neurologist referred me to the rheumatology department to see if they could shed any light on my symptoms. Rheumatoid arthritis was quickly ruled out and fibromyalgia dismissed (despite only examining my fingers, hands and wrists…) but several vials of blood were drawn. These blood tests followed regularly, testing my ‘creatine kinase’ levels – an enzyme released into the blood with muscular damage – in order to investigate, I was told, for ‘myositis’ or even ‘myotonic muscular dystrophy’. The maximum level this enzyme ‘should’ be is no more than 200, however my first results showed 476 and subsequent repeats have never seen this decrease into anywhere near ‘normal’ levels. Nerve conduction studies were ordered and all hope was pinned on these tests resulting in some sort of diagnosis.
Despite needle nerve studies being performed in three different areas of my legs, the investigating doctor turned to tell me, quite happily, that everything was normal. My eyes fell. As he explained my ‘good’ results I could tell he couldn’t understand why I was so visibly troubled by receiving what, in reality, is good news.
I was disappointed. Another appointment. Another investigation. No answers. More questions. And the cycle continues where all hope is pinned onto the next appointment (a vascular surgery clinic and possible muscle biopsy plus further cognitive testing) in the hope that something is discovered. An exhausting, continuous cycle.
Post inconclusive nerve studies, and yet another road-block hit, I asked to see the rheumatologist again to try and seek some clarification on their findings. I was met with a refusal, citing that, in an extremely confusing letter that I do have fibromyalgia (“whatever that is”). However, the letter is laced with contradiction itself, and doesn’t seem clear to me (or those whom I have asked) if I have it or not. However, defined as, “a condition associated with widespread chronic pain, fatigue, memory problems and mood changes”, I guess those symptoms do connect with me.
I have got to the stage where I honestly don’t know what my actual MS symptoms are, if any.
The latest from my MS nurse is that my symptoms are now apparently side-effects of Tysabri, something which I have questioned but has been previously refuted. I appreciate it is difficult for even the most highly-skilled and experienced medical professionals to know what is going on, but I just cannot accept what I don’t know. As tempted as I am to withdraw from my Tysabri (in the hope that all these symptoms are side effects), it is a massive gamble, as the possible affects of withdrawing from this medication are potentially devastating, one which my neurologist recently suggested I do not take.
I feel trapped. And tired. And drained.
And then morning comes.
Every morning I get up half an hour before I’m due to be in work.
Another restless night. Tossing, turning, getting up, walking around. I used to blame one of the many medications I have been prescribed but, as time goes on, I realise it’s more than that.
My brain has shut down.
It feels like there’s a weight on my chest. No soul. No energy.
“Come on just get the fuck up. Let’s go. Just go.”
I crawl out of bed and stagger to the bathroom. I look at the floor when I brush my teeth as to not look myself in the eye. I flinch if I catch my reflection in the mirror. I can’t look myself in the eye anymore.
My eyes look empty and hollow. My body repulses me. I feel like I’m rotting. There is an ache inside of me that makes me feel eaten up with worry and self-loathing.
I try to eat and wash at least. Keep the exterior shiny and free of cracks.
Paint on the smile and off I go.
Another day in this fucking pit.
Somehow, I have managed to remain in work, however I am not coping with my job whatsoever. My job is the only thing I have though so losing that, as difficult as I am finding it, would be catastrophic, particularly as I could never see myself having the ability or the confidence to ‘talk myself up’ for another. I work with a many young people with a wide range of challenges. I try to help them. I want to help them. But I still, deep down in my heart and soul, feel no value to anyone. I still try everyday to make their day a little better as I can’t seem to do it to myself. It’s tough, however, when you don’t feel it is enough to anyone or yourself.
“Your greatest test, is when you are able to bless someone else while you are going through your own storms. That is the very key that will unlock the gates of Heaven over our lives if we just learn to listen, to be kind…” ― Rafael Garcia
A few weeks ago I attended an information course for my job regarding ‘Mental Health in the Autistic Spectrum’. The content of the course was excellent, delivered with such effectiveness and clarity, however I also found it somewhat overwhelming. The facilitator spoke about stress and the distinction between stress and anxiety, and how we can go about helping the individual to manage and hopefully reduce their stress levels. We were introduced to the idea of the ‘stress bucket’ and asked to draw our own. In our buckets we were asked to write anything in our lives which contributes to our stress and then ‘holes’ punched out for any methods we use to reduce that stress or be able to let some of it free. As I predicted my bucket was brimming with stressors. But with no holes. Zero. None.
Being a broken record again, it’s clear what my holes and my relief used to be – running. I sat overwhelmed, glancing at other peoples leaky buckets. “Mine must be made of fucking steel”, I thought. I zoned out and it really hit me how I do not know any way out. I hope that one day things like writing this blog may provide some sort of relief but the longer it goes on, the more hope I lose. The levels of pain I have been in every day in both mind and body I could never adequately describe. It is killing me.
It’s such a small, innocuous word. We’ve all experienced it though, pain is part of life. But imagine a life with a pain that’s unending, disabling and all encompassing; pain that stops you dead and sucks away your ability to enjoy work, limiting your social life, and destroying relationships. The constant struggle of trying to stay in control of pain is physically and emotionally draining. Add to that daily demands things like trying to keep a job and you have the perfect storm for extreme fatigue. And extreme frustration. And I crack.
And I worry about where I will end up when I can’t care for myself and who will care for me. I worry about that when I’m tired, hurting, or alone. And I’m alone a lot. And I’m scared. I think about giving up a lot, too. I don’t talk about it ‘out loud’ very often at all, but I think about it. And honestly, in some ways, giving up feels equivalent to being pain-free again and on days like today, that’s all I really want.
My body remembers everything it used to be able to do. Running and playing football being the best examples. So sometimes, I still think I am capable and try to do those things hoping that I will be able to. And when I can’t, I either end up hurting myself or I have to find someone else to help me. And I don’t like asking for help. I feel no one understands.
It is extremely hard to stay positive and accepting of whatever is going on in my body that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty…I could go on. And the confusion is extremely frustrating. And time-consuming. I can’t ignore it.
So the feelings have to be accepted (which I cannot do without knowing the cause for so long) and allowed to come out, too. But, for me that causes intense fear that can leave me overwhelmed to the point of motionlessness so, like many of my thoughts, I try to suppress those too.
Most of the feelings I have mentioned are invisible.
No one can really see numbness.
No one can really see chronic pain.
No one can really see depression.
Most of my symptoms go unnoticed by everyone. One day they can alter my memory, the next my balance. Some people will assume that I don’t really have anything wrong at all. A good thing, to an extent. But also incredibly frustrating when it denies you treatment and the ability to be taken seriously by everyone, including medical professionals.
Add in living with all the other things that other people can’t see add to a recipe for further feelings of anger, uncertainty, frustration and fear.
I’m sat in a room full of people. About a hundred of them. One voice fills the room, heads turning to listen. I heave my tired eyes around the room. My mind speaks up again,
“Everyone would be better off without you.”
I scan the room again.
“No one cares if you’re here or not.”
I catch a glimpse of the person in the room ‘closest’ to me. Nothing. No spark to shake me out of it. I look at them and I feel nothing. No connection, no feeling that they can help. No feeling that they should help.
“You’re nothing to them, you don’t matter.”
My head drops, soul-crushing emptiness raging through me. My shoes stare back at me. My legs torment me. All I see is pain and numbness and despair.
A crushing low. A demon whispering:
“This will only stop when you’re dead.”
A final glance around the room. I find myself utterly convinced no one cares. I wish I was dead, I tell myself. No one cares.
I bury my face in my cup of tea to hide my face.
Heart racing. Those same hands still sweaty.
The irritating sound of chatter in the background piercing my brain.
Get me out of here.
So I can say with absolute certainty I’m suicidal. I have been for almost three years now.
In general, most of my thoughts are ‘passive’. Being ‘passively suicidal’ means you wish to die. Actively suicidal is just that – you have your plan and you’re planning on going through with that plan. For example, I walk along the road-side at night, and it wouldn’t really bother me if a car mounted the pavement and slammed into me. Many times, I wish for it. That’s how I feel.
I have been asked before, “Do you have a ‘plan’?”. The answer is, I don’t really. But it’s not rocket science is it? It really isn’t difficult for passive thoughts to become active and ‘a plan’ formed.
Thoughts of death follow me single everyday. Some days I am wearing it, some days it follows from a distance. But it is always there. Watching. Waiting. Can you imagine how that feels? Right now I am wearing it. It is dripping off me.
What’s worth holding on for?
I’ve waged war against depression and anxiety for probably almost half of my life. About thirteen years maybe as an approximation. Thirteen years of fighting an endless battle really does a number on the brain and the soul.
Depression can be frightening to those that have never had it. Having the blues and feeling down is something that we all go through but cannot, in any way, be compared to clinical depression.
For me, the worst aspects of depression are like falling into a ocean of pain and self-loathing, a black hole of hopelessness in which the walls themselves crumble the harder you try to crawl out of it. Depression breaks on me like a tsunami. One big wave in the morning, sometimes for an extra long time, and then aftershocks throughout the rest of my awake time. Those days, thoughts come almost constantly.
It doesn’t sound much but when the thought of having to do something as basic as eat totally overwhelms you then it really, really is. The thought of having to do something to sustain yourself fills me with total despair.
The things I loved have become joyless and the simplest of tasks almost impossible.
That is how I feel right now, and have done for some time.
And I have never experienced anything like it.
But. I can always flick the master switch.
Got to keep moving.
Step out of the house.
Legs like lead. Every step heavy.
Every step like an imminent explosion.
Head follows. Overwhelmed. Eruption coming.
Foot dragging along behind me, painting rubber across the tarmac.
Can that guy notice?
“Why are you doing this? No one cares.”
Got to keep moving.
Got to keep my head above water.
Despite the widespread pain that batters my body every day I have tried to continue at least some sort of physical activity. Since January 1st I have walked (and occasionally cycled) over 6km a day of ‘planned’ activity every day on top of my cumulative daily total. I’m trying to show resilience, trying to show some level of resourcefulness, trying to keep my fundraising going, however all I am met with it my mind beating me up. This time, however, as much as I try and fight it, I agree.
As it stands I have completed nearly 900 km of activity in almost 138 hours over the 131 days in this year on top of anything I do throughout the day, an average of 6.59 km a day. But it is ruining me. Bringing me more pain and more misery with each passing day.
To be honest, it’s not so much the actual activity but more the lack of support. Every day my activity and my link to my fundraising page posts to social media, where over Facebook and Twitter I have, in total, almost 6,000 ‘followers’. However, I could almost count on one hand the number who have interacted in any way. I can imagine that most reading this would consider this quite pathetic in isolation but I feel it just emphasises the way in which the mind of a depressive can work.
I must stress, that I’m not doing it for everyone to say ‘well done’ (I never have) but when there is almost zero interaction in over five months I gradually get the point. But what else do I have to give? Nothing. It is my limit at the moment.
I’m convinced it is not enough both to me, or anyone else. “If I was running it people would be over me”, my mind keeps telling me. The lack of running continues to absolutely destroy me. No one is interested anymore. Now I don’t run, people don’t know what to say to me. The typical icebreaker was “How’s your running, Stu?”. Now those who still ask me that and those who swerve me all together irritate me equally.
Anyway, this all adds weight to my chronic feeling of worthlessness. I feel of no value whatsoever to anyone. People can tell me all they like about how ‘good’ I am at something but if I don’t feel it myself it is meaningless. As I mentioned in a previous post this applies to that chronically overused word ‘inspiration’ as every day I get further from tag which, as much as this used to freak me out, I miss it. Or should I say I miss feeling it. Now I’m not and it hurts me. It’s was nice to feel appreciated. It was nice to let myself feel appreciated.
I miss running. Exercise. The hope. The charity stuff that came with it. I miss the feeling that I had control. I miss feeling that I was making a difference. I shouldn’t have taken it all for granted. Now I just aim to get through the day without falling apart.
And trust me, that is far, far more challenging than it sounds.
Staggering along. Another 5km in the bag.
“No big deal. Most people could do it”.
Got to keep going. Got to cling on. Got to keep moving.
“Take the shortcut home. Through the flats. Along that path you go on about.”
“It’s a solution – it’ll end all your moaning.”
Along that grass path, the one I used to love, towards my home there are a group of flats and a cluster of trees. On two of those trees now hang a total of three blue ropes – ropes that were never there in the past. In the past when I used to run under them almost every day. I can’t help but make the connection into why they appear now and so hence, I avoid that path. It haunts me.
“Two minutes and it’s done. Or come back later when it’s quiet. Don’t resist”.
Three hundred and twenty seven steps from my home. At times comfortably, but also at times intimidatingly, close.
“It’s the solution. The end of your pain.”
I imagine you’re reading this and assuming I must have some sort of mental health support in place. I did, fairly regularly, until October when I was discharged from my local mental health service. Between January to October I saw two ‘Community Psychiatric Nurses‘ (CPN), usually every single week for at least an hour where I engaged in ‘Interpersonal Psychotherapy’ (IPT) – a type of psychotherapy ‘that focuses on interpersonal issues, which are understood to be a factor in the genesis and maintenance of psychological distress’.
However, after this was complete because I didn’t find any benefit from this particular therapy, I was discharged, and despite my protests to my psychiatrist of whom I see every eight weeks, I remain in this situation. Furthermore, during the therapy sessions, my CPN felt I met the diagnostic criteria for a personality disorder based on what I was saying in the weekly sessions. However, my psychiatrist, of whom only saw me a handful of times, disagreed as his ‘opinion trumps the CPNs’ so I was no longer getting to continue my CPN contact after my IPT had finished.
Over an hour every single week (which still didn’t feel enough for me) to half an hour every eight weeks. This is all, despite telling them, quite openly the depths and the darkness of my thoughts
I’m also particularly hurt because, during these CPN sessions I was regularly scoring 27/27 on a ‘PHQ-9’ – ‘a multipurpose instrument for screening, diagnosing, monitoring and measuring the severity of depression’. Ironically, when I began seeing a CPN in January my score was 19/27, however, as that year progressed and the pain continued and my social life and activity levels decreased I have felt unable to deal with even the smallest bout of adversity. Well and truly, overwhelmed.
“Depression can be seen as the response to the long-term threat posed by constant frustration and disappointment, by the loss of people, things and status.” – Mark Williams (‘Cry of Pain: Understanding Suicide and the Suicidal Mind’)
As a person with ‘major depressive disorder‘, I often experience difficulties when asked how I’m doing. Several thoughts go through my mind. Do they really want to know? People don’t want their day ruined by my thoughts, right? Just say you’re fine. Tell them something positive. Don’t ruin their day with your troubles. Everything in my racing mind tells me to smile and give them good news.
Simply put, I cannot muster more than just “I’m fine.” Sometimes I wish people knew what I mean when I say I’m fine. I wish they’d dig deeper. My voice says “I’m fine,” and though I give a weak smile, my face must give some indication I’m lying. What does “I’m fine” really mean to me, anyway? Well, it means lots of things.
“I’m fine” means I’m too scared to tell you how I feel. I’m afraid that what I’m thinking will make you judge me. I’m afraid you won’t really care. I’m afraid you’ll think I’m weak. Most of all, I’m afraid that when I tell you how I feel, you might give me some comment about how everyone feels crap sometimes. This isn’t sometimes for me. This is almost all the time. This has been for most of my living memory. I’m afraid you’ll minimise my feelings and sum it up with some kind-sounding waffle. I am told I have nothing to worry about. That I’m loved. Cared for. That people are here for me. I don’t feel it myself. At all.
“I’m fine” means that what goes on in my mind sounds scary and all too sad. My mind races from one negative thought to another, and I don’t think you really want to hear it. Every day is filled with pessimism and hopelessness. I fight against the feelings that the world would be better off without me. Depression makes me feel like I can’t cope with even minor stresses. Just as much as I don’t want to feel this way, I don’t want the people around me to know about my feelings.
In short, “I’m fine” means I’m really not fine. It means that I need someone, anyone to help get me out of my own mind. Sometimes it means I need help. Can’t anyone see the pain in my eyes and the hurt behind my smile? Part of me gives you this “I’m fine” line just to push you away as, to me, it’s hard to believe anyone would want to know about these horrible feelings. Feelings I still cannot adequately put into words. When I say “I’m fine,” it means my feelings are so awful that I can’t even tell you what I’m thinking.
Only those who identify with these feelings can truly understand the agony behind the words “I’m fine.” Our instincts tell us to push you away because we’re either protecting ourselves from rejection or we’re just plain scared.
I’d love to tell you all that it goes away after a while.
But it doesn’t.
“Maybe you should just go somewhere nice?
Just fuck off to somewhere new.
Anywhere but here.”
Why do you want to know the cause of your symptoms?, asks my GP.
You need to be more resiliant, says my doctor.
Spinal cords lesions? None.
MS progression on any of my MRI scans over the past few years? None.
Rhumatoid arthritis? None.
Fibromyalgia? Not sure.
Muscular dystrophy? Don’t know.
Indescribable physical and mental pain every single minute of the day.
Anyway, it’s all good because you can’t see it.
You can’t see it so maybe it’s not really there?
Try five minutes in here and see if you want to carry on.
You’re looking well, Stu.
But you look so well.
If only they knew how it felt.
If only I knew why.
“Three hundred and twenty seven steps
“Depression is such a cruel punishment. There are no fevers, no rashes, no blood tests to send people scurrying in concern, just the slow erosion of self, as insidious as cancer. And like cancer, it is essentially a solitary experience; a room in hell with only your name on the door” ― Martha Manning
I’ve been sat starting out the window for days ; staring at these four walls for weeks; sat writing this for months but without the courage to hit ‘post’.
Depression and chronic pain are brutal. They quietly take everything away from you. In my case, and in most cases of chronic pain, it’s invisible. I don’t have a huge tumour growing out my face or an arm of a leg missing. Pain makes everything personal and much more intense. I don’t always have the patience to deal with much anymore, no matter how small. I’ll end up in a mess.
Life is cruel and unrelenting. This is going on for years – months and months of torture and pointless hope. I cannot handle the pain and sadness or the fear that something else even more horrible would happen to me at some point in the future. I want the endless river of physical pain and mental blackness to stop, but I have little faith anymore that it will.
I miss having a calm mind and a calm body. The feeling of just sitting there and being able to relax and do nothing, without being battered by these symptoms. I continually have to distract myself calm myself and try to fix myself. I’m utterly exhausted by it all. I wish I could have a break. My only bit of true physical and mental peace is when I’m asleep. Which is challenging in itself.
I wish people could see all the dark spaces in my mind where I tend to reside under lock and key. I wish they could understand that I am hostage to my own inner workings. That there’s a constant metaphorical gun aimed at my head and that I’m ever so ready to pull that trigger time and time again. Dealing with the reality of depression and pain with no hope of a future is consuming and it makes me long for a way out. Never have I dealt with anything more difficult that my own body. My own soul.
I’m amazed that I’m still alive, to be honest. I feel this is my biggest achievement although paradoxically I long not to be here. To me it’s existing; not living. Waking up, eating, sleeping, walking, going to work but dead inside. The scariest feeling in the world is seeing no way out. No avenue out of the darkness. To feel like the sky is falling in.
Most of the population wake up and don’t think twice about getting on with their day and their life. They can’t fathom what it’s like to struggle to place any value in your life. To wake up every day asking yourself “What the fuck am I doing here?” To constantly feel physically drained. A prisoner of your own mind.
As unorthodox as this may seem to someone else, the thought of having complete control over whether I live or die has provided me, many times, with enough of a sense of comfort to make it through what may have been an otherwise unsafe night. While it seems like the rest of my world is turning into chaos and growing further out of my management, the fact that I can control something as essential to life as a breath gives me a sense of strength. I do realise, in essence, everyone is in the same position, being able to end their lives, but being passively suicidal most of the time, I often feel that is truly the only thing that is in my control; and just knowing that provides enough hope and comfort to get through those nights, and live to fight another day.
I got a feeling I just can’t shake.
I got a feeling that just won’t go away.
You’ve gotta just,
Keep on pushing and,
Keep on pushing and,