It really doesn't take long for chronic pain to put you in a dark hole. Prone to depression or not, you can get there quickly when chronic pain is a factor. When your whole body hurts, even things you are meant to enjoy get invaded by the pain. It's pervasive, it's relentless and it doesn't care what mood you're in or how hard you are trying not to feel pain or how hard you are trying to not be afraid of being in pain.
I've been good for so long. I had managed to get my pain under “control” even to the point that I was able to play sports again. Now I sit here, day maybe ten of non stop every day pain again and it makes me wonder if I ever made any progress at all if I can just slide back to this so easily. What did I do that worked? Why isn't it working anymore? How did I let myself get this way?
But there lies the catch right there: how did I let myself get this way. Like it is my fault. Like I am to blame for some lack of fervour or effort or intelligence. Like not only should I have to endure feeling this pain radiating through my body but I should also feel guilt at it's existence.
It's funny. Guilt, shame, frustration, despair all of these stressful emotions are known to pump more stress chemicals and therefore pain chemicals through my body. Because I know this, because I should know better, I should know how to not feel guilty for this. But I don't. So then I feel guilty for feeling guilty for having pain. Which then causes more pain. That's comical right there.
Luckily for the most part, there is one thing I know and sometimes it's the only thing that I can hold onto: this is not my fault. I didn't do this to myself. I didn't cause this. I am not to blame.
I am responsible for doing the things that I can do to make myself feel better. I am responsible to force myself to stop doing any activities that might be bringing on an attack or a flare up. I am responsible for the delicate balance between doing too little and not doing enough and I am responsible to take time to slow down and reset my mental state to get it into a place where I am calm and composed. I take these responsibilities seriously. I take balance seriously. I’m a doer; a natural over-achiever. I like the doing of things and now I have to balance that with the not over-doing of things. Over and above pretty much anyone I know. Certainly over and above anyone I know who is well because largely unless you have a condition like this you don't have to think about these things. You get tired and you can push through it if you have the mental strength. I used to be able to do that. I have the mental strength - but that's what costs me my physical strength because if I do push through, my body gives out. Completely against my will. So now, I am forced to think about these things. I am forced to think about what something will cost me energy wise. I have to think; how will I feel after this? How will I feel tomorrow if I do this today? What else do I have on today, this week, this month? Can I ‘energetically’ afford this? I am so tired just from all the thinking and figuring out what will or will not make me tired and sore and more useless!
But if I have done all of this thinking and I have done everything I possibly can - all of the right things - and I still have pain in spite of it - then what?
How can I not feel disappointed when I try so hard and I still can't fix this? How can I not feel frustrated when I wake up and the first thing I notice is my hands and my legs are aching again? That I didn’t just magically wake up better? How can I not feel desperate and defeated and devastated when other people start to notice because I can't hide it anymore? I try to make jokes and lighten it up but clearly it's not very funny. I try to be honest about it while at the very same time I try to hide it's impact on my spirit.
I think that might just be the hardest part. Even worse than the pain is the burden you become on those around you. I am used to being “light”. To being the one who can turn the energy in the room around; a smile, a laugh, a quirky little look on my face that tells people life isn't so serious and that we can have some fun in the moment. My face, instead of being my ally, is now a traitor. Even when I am managing to be in good spirit, when I am trying so hard to show that I am happy (even when in spite of this stupid condition I actually am happy), the pangs of pain show through on my face and uncover the reality: I'm still struggling, happy or not.
So I try harder. Because I'm damned if I want this pain to steal every single fucking moment of joy that I have. I don't want to draw attention to it. I don't want to look like I am in pain. But even then, if it's not the pain, well then I must just look like a colossal bitch. Because that face that used to make silly faces, and smiles and laughter and shiny eyes, now looks drained. I look like I'm straining, and I am, but if I had one super-power it would be to hide it better. Which again is comical, because I already hide it well. I listened to a podcast yesterday and the doctor said that one of the things with this condition is that most people look a whole heap better than they actually are. I must say being a woman helps. Makeup hides a world of hurt.
I want to hide it because the less attention I draw the more chance I have of forgetting it myself. I know I am capable of finding enjoyment even in spite of being in pain. I know, because I have to! I take things a little slower, I am slower to respond to things, I am slow of mind and wit and blinking and sometimes I come off like I am not enjoying myself (but again that's just my face). Then sometimes I realise that I'm hiding it so well that people don't know what is wrong with me except for the fact I look uninterested or bored with them but in reality my brain is just not functioning well; sometimes I forget things or I simply can't focus because it's sucking the life right out of me.
It takes an exhausting amount of effort to concentrate on just my facial expressions. I found myself at the traffic lights this morning, standing there, keenly aware that I must look like a horrible person because I can't even hold a peaceful relaxed face let alone a smiling happy one. So I try to relax my face muscles and actively try to look like I'm not trying too hard. Oh the head miles I travel. What a waste. What a waste of my energy: to try and look relaxed to a bunch of strangers at the traffic lights. Why not just be done with it and let my resting bitch face let them think whatever they want to? Because I care. I care about the world I live in and the people I come into contact with and the message I am sending out. I care about being part of my community and connecting with people. I care and I care and there is my own undoing. I care too much and I can't switch that off even when it's costing me the very energy I need to survive.
Imagine how much I am caring with my own family. My partner. My kids. I am scared they are going to not want me anymore. I used to have so much energy. I used to take groups of kids to Luna Park on the train, and go to the park and be fun. Now I am scared that I can't even do my jobs well enough all the time and I am scared I will become a burden. I am scared that this terrible thing I have will undermine my relationships and steal my ability to bring anything good to the world.
That fear comes at a cost too: the fear alone costs energy and makes pain. You see my conundrum? I am facing the unbearable and I am not allowed to have an emotion about it for fear I'll make it worse.
So the best thing I can do is pretend. So most of the time that's what I do. Rest when no one is looking, and pretend for the rest of the time. It is really the only thing that I can do. Because the raw unfiltered truth of it all in this circumstance is like twisting and thrashing a knife into an already gaping, festering wound and it doesn't make it better for anyone it just makes things messier and harder for everyone.
I know it’s hard for those around me. It’s hard to watch someone you love in pain. I know that desire to want to make things better all too well. It’s hard to watch people watching you in pain too. It’s even harder when you know there’s not one single thing that you can do to help them to help you because there’s nothing they can do.
So what can you do? If you're someone who is experiencing chronic pain? I say keep digging. Keep investigating the things that will help you. There are things I'm learning even now, a few years into this that I didn't know before. Things like the dose of magnesium I take needs to remain a really high dose. Things like triple strength fish oil needs to still be three capsules a day to have any effect. I have learnt so much and there is still so much to learn. One thing I know for sure is that having something to focus on is a key thing to moving forward and feeling like you're not wasting your life. I use my vitality journal which you can find out about here. I find that if I'm using it regularly I have a lot more success than if I am not.
It's very simple. Things like drinking enough water, taking my vitamins, keeping track of how much pain medication I'm taking and making sure I do at least 10 minutes a day of stretching or yoga and making super sure I take time out to be mindful and meditate. If I fall off the wagon with this stuff I fall off hard. So it's a way of making sure I stay on track. I do post things about what works with managing chronic pain but I guess this post is more about what it's like to live with chronic pain and let's just say it's not easy.
What about those of you who love someone dealing with this? When you love someone who is in chronic pain? Let them smile. Sometimes it's necessary to pretend you don't see the pain. Especially when you can see they're trying to have a good time in spite of it. Overlook it occasionally. Distract yourself. See them wince, know they would hide it if they could and just change the subject or look out of the window. Pretend you didn’t see it. Pretend with them for a little, just for a while, so they don't have to try so hard to be 'normal'. Trust them to know what they can push themselves through and what they have to say no to. We are constantly learning too and we will make mistakes, but the only way for us to know it's a mistake, is to actually make them. There are no rules. There’s just torture if you didn’t get it right. So trust them to do what they have to do and just pretend that most of the time everything is still ok. Encourage them to seek out professional help, and to read as much as they can and to join support networks and seek alternative medicine like acupuncture and a naturopath but don't ever do that when they're telling you they're struggling because all they will hear is 'you're not trying hard enough to get better'. Trust me when I say they are doing the best they can. Share things with them like this article, or other articles you find that have more info. Do some research yourself and take some of the burden off them. Look into their condition so you can get your head around it and understand them better. It's so lonely in here. But it's loneliest when I'm trying with all my might to just be functional and people refuse to let me pretend.
I think that's what I need the most. I need you to just pretend along with me. I don't mind a light hand on my back or my leg to let me know when you know I'm struggling, but let's not mention it out loud. Let's not let this stupid condition have so much of our headspace and conversation space. But occasionally, just occasionally, stop pretending and hold me close so I can stop pretending for a second and let it all out without feeling like I'm going to break you with my pain.
NOTE: Since the initial posting of this particular blog post I have developed a stress management program you can find it HERE.