When I had my appointment last week, aside from feeling seen and heard, the lady I met with showed deep empathy for me. Along with telling me I made my condition look classy with my new sunglasses, she also commented that it takes a very strong person to endure the situation I’ve found myself in. My mind battled with the thought that she was being patronising and the fact that she was in fact showing me validation and encouragement for my strength. I went with the latter, because ultimately what she said made me feel good and a little bit proud of myself.
The truth is that while enduring immense levels of pain on a permanent basis is in itself fucking hard work, it’s in fact the toll this takes on your body and your mental health that should also be a main concern.
It’s something I’ve had to think about since being told I would be undergoing a psyche evaluation. I do not know what the purpose of it is – is it to determine the impact leaving me in this pain has on my mental health, or is it to determine if my mental health will impact my ability to cope with such an extreme surgery and recovery? The answer I do not know, but it is one I will ask at the start. Then I can determine exactly how much of my mental suffering to divulge.
I think anyone coping with a chronic illness, particularly chronic pain, will attest to the fact that it is the mental battle that can break you. I can’t cope with the pain, but I am currently left with little choice on the matter. When I lay in my dark room with my kindle I can almost convince myself it’s not that bad. I can lose myself in a book or a visualisation meditation and with my focus elsewhere I am less focused on the debilitating pain radiating through my face and head. This is my coping mechanism for the pain. It’s not medical or scientific by any means but it’s got me this far.
Arguably there are more options available to fight the mental battle, but I don’t often outline what I do or what I have done to get me this far. The pain is the pain, it’s sometimes worse but never better. There’s a kind of certainty and consistency that can bring comfort. You know what to expect. The impact the pain has on my mental health though is far from consistent and offers no comfort. Regularly throughout the last 18 months I reached points of suicidal thoughts and have had to step up to bring myself out of it. Each time these thoughts creep back in they are worse – more convincing. What I mean to say is that I have gone from ‘I can’t live like this anymore’, where I then snapped back with a ‘yes you can, we haven’t tried everything yet’ to ‘I wonder what the process is at the Swiss suicide clinics’ or ‘I’m glad I tidied my room, it’s one less thing for someone to have to do when I’m gone’. They’ve increased in severity and sincerity.
So every time I become aware of them I know I have to up my counter battle. I increase my therapy sessions, I increase my anti-depressants, I write in my blog and I let those around know what’s happening. Shedding light on these thoughts has several benefits. The first being that by exposing them I take away the fear of them. Much like shining a light under a bed to convince your child there’s no monster to be scared of. The second and arguably the most important is that by telling those closest to you what’s happening in your mind you are also building an army. A safety net. You are no longer fighting them alone, you have reinforcements and you know that those around you will keep you safe. This is key to survival.
When these thoughts start I confide in my therapist and we up my sessions to 3 times a week. Generally I have two sessions a week. She reminds me that if I get at all twitchy at the thought of finding my end then I must call her immediately. During these times I also ensure that if my mum is working from the office that my Dad comes to visit or I go and read at his. Again, use your safety nets. I then contact my doctors to discuss my medication dose if it is particularly bad. I hate more medication, but used in the right way that can and do help. And there’s no shame in help.
BUT the other thing that is vital is to do what you can to prevent these phases, for that’s what they are, they come and go. My obvious preventative measures are 2 therapy sessions a week, a strict medication schedule, an even stricter sleep routine and most importantly, love. I surround myself with love, because it’s very hard to give myself love sometimes. I give and I receive wherever possible. Of course my time is limited, despite having immense amounts of it on my hands. Each week I have a social schedule, I will try to see friends and family at least 3 times a week, generally with at least day in between. I try to make sure I see each friend at least every two weeks as any more I start to feel like it’s been years. Maintaining these connections is what has kept me going. Knowing I am loved and ensuring to nourish these connections. I also think laughter is a great healer, so I ensure that with every interaction I have that it leads to laughter. True, unfiltered, tear inducing laughter.
There are other, often overlooked, things that can also protect your mental health. I’ll start with my favourite, it’s social media. There is immense power in social media and it is often used in the wrong way. I don’t often scroll, because it’s mentally draining, but these last few days my social media has been filled with hateful and harmful comments and posts about Sam Smiths Brits outfit. I have a very simple rule I try hard to follow in life, if it causes me and others no harm then do what you like. People are vicious, particularly with the ego boost you get when someone positively reacts to your comments on social media. It’s largely a place where people feel safe to say what they would only say behind closed doors. So I rarely scroll through it, I log on, check what my friends have posted and then it’s off again. I have message notifications turned off and I have time limits set for access to each app. Once times up I can’t access it until the next day, though I have never reached the limit yet. I also mute people on my friends lift whose posts don’t uplift me and unfollow all pages that share content I don’t feel good about. Basically if it doesn’t make me feel warm and fuzzy and instead makes me feel heavy or angry then it’s gone. No second chances.
I am also largely a routine person and if something doesn’t fit my current routine then feel off balance and anxious. Like to offset my time in bed I ensure every evening I’m downstairs in my recliner either reading or watching tv and having dinner with my mum. I don’t like to deviate from this much. There’s a safety that comes from my routines and if an event comes along to beak this routine then I need details, times, locations, exact plans, and more details. My routine also ensure I take my meds on time, as taken them a mere 60 minutes late can have unbearably painful consequences. Of course you may read that and think well she’s a little bit anal and needs to relax a little. But right now, for the good of my survival, I will be anal about my routines. Perhaps when I’m better I can take the day as it comes again or go out on a whim. But right now, that’s not beneficial to my well-being.
In the interest of being honest, I must also tell you about the greatest weapon to keep me fighting my suicidal thoughts. I’ve discussed my army of safety nets, aka the friends and family who have supported me every step of this journey. But I haven’t yet mentioned my greatest weapon. Bella. Obviously it was going to be Bella. Aside from the fact that she has been glued to my side since July 23rd 2013, she is my greatest friend and gives me purpose each day. She ensures that each day I am never alone, making sure that I am awake for both hers and my meds, breakfasts and cuddles. She makes sure that I am repeatedly up during the day to tuck her back into her duvet, thus increasing my movement. She’ll never let me forget it’s nearing dinner time and also makes sure I’m aware of any knocks at the door before the person has entered the drive. This then gives me the extra time required to make my way down the stairs to greet them. On days when I haven’t got any social activities planned she also makes sure I still reach my laughter quota for the day. She has taught me more about grace and patience these last 18 months than some may learn in a life time and has taught me to enjoy the little things. The fresh breeze and it flows through my clothes and hair, the smell of the outdoors after a bloody good downpour, the way the birds serenade my sunset walks with my darling Bella by my side. This, no she, is my greatest ally in my battle for survival.
I know I am not alone in my fight to want to keep going. I know that someone reading this might be right their own battle, you might be fighting your own battle. But keep fighting, take every step possible and apply all available measures that help you in your darkest moments. Build your own army and use those safety nets. Every person has their place on earth and it’s there’s alone. No one else could possibly fill the place that was created specially for you. The same as everyone has their own individual purpose. You have a purpose. You might not know what that is yet, but when you do you’ll know the importance of you filling your place here. You belong. You are special and you belong.
A good friend recently told me a few things that I believe everyone needs to hear at some point: (I’ll let you decide which is more appropriate to you!)
“Imagine what your life could look like a year from now if you just keep going.”
“You haven’t explored your gay side. You can’t check out without finding out what you like.”