Some pain is emotional, some is psychological, and some is physical. Pain can be caused by an accident or some sort of trauma, and other pain can be caused by by disabilities or diseases. Some pain is dull, and some is sharp; some aches, and some is excruciating. Some heals with time and others doesn’t.

Pain can do funny things to our bodies. Pain has caused me to faint before, as if we are in pain for sustained periods of time, that can sometimes affect our hearts and blood pressure. Pain can, as a result, be very draining physically. It can also be quite draining emotionally, especially when there doesn’t appear to be any reprieve. I know firsthand how exhausted, and sad, and just generally over it pain can make us feel. I know how challenging it can be dealing with all the different sorts of pain. 

I have always been against taking medications for pain. I know others don’t have any alternative, as their pain has become too severe. But, for me, I am trying to hold off as long as possible so that, when I do have to start taking medicines everyday, I knew I did everything I could to hold off as long as possible.

As a result of this, I have learned some valuable tactics for dealing with pain, and I thought they may be valuable for someone else to read. Because, whether it’s FOP or something else, chances are none of us will really, honestly, be able to get through life without experiencing some sort of pain. So we need to know how to cope. Also, pain can make us feel vulnerable. And if we don’t talk about it, that can make us feel even more vulnerable, as then we feel as if we’re dealing with it alone.

First and foremost, distraction is important, in whatever form you can manage. I know that pain can sometimes really take it out of you, so you won’t be able to distract yourself by going to the gym or even going for a stroll. But there are still ways to distract yourself. Send a message to someone you haven’t seen in awhile and have a bit of a chat – maybe organise a catch up for when you’re feeling better. If you like clothes, you might browse for something special to wear when you feel better, and then you can also distract yourself by organising whatever that event might be. Maybe listen to some of the recommendations from your friends and pick up a new, engaging TV show – and pick one that’s going to make you feel better. I recommend shows like Schitts’ Creek. Find a good crossword or sudoku app. Maybe you can even start a blog! The point is, even though you might b stuck in bed, doesn’t mean your mind has to be stuck.

Next thing – set yourself little goals. Accomplishing something, even something small, can be a great way to give your brain a nice, positive jolt to help balance out the negative impact pain can have. In my case, when my pain is more severe and I’m having to physically take it very easy, I set myself little physical goals – like one day I’m going to make it to the bathroom to brush my teeth, the next day make it into the kitchen to refill my water bottle, and so on. These aren’t really groundbreaking or major accomplishments, but having this progression of goals helps me feel like I’m getting somewhere, which in turn helps with the pain.

Another thing – be honest with yourself and where you’re at. Don’t push yourself. I know it can be hard to acknowledge and deal with sometimes, but I think it’s better to take it easier in the short term, if you are in serious pain, so that you can properly recover and also recover quicker. You might miss some things that you really want to do. But in the long term, you’ll benefit. The pain is sending your body signals, and it’s sending those signals for a reason. We need to listen to those signals and be more in tune for what condition our bodies are in. Sometimes they just need a proper rest.

Finally, find laughter, wherever you can. Again, doesn’t need to be “tears in your eyes” laughter – maybe something to make you chuckle or smirk just a little bit. But that smile sends a positive message to the rest of the world, and I think even to yourself. And this is a very important message. Finding even a small amount of positivity in the darkness means that, hopefully, the pain won’t become overwhelming.

But I think fear can be an important protective mechanism for us. It’s part of our instinctive nature as animals. Some fears may seem more rational than others. Some may stem from an event or a thing that happened to us, and others are innate. All of these fears are valid, because in our own heads they all come from somewhere.

For me, I live with fear everyday because of my disability. Adding to this, my fear becomes much more heightened after an accident or a fall. Some days it can be so paralysing that I struggle to get out of bed. In the weeks following the accident, I’ll have daydreams, or dreams in the middle of the night, when I reimagine the fall over and over and over again. It can be so scary for me. And, for a time, this fear hinders me from making the most of my life. I was planning a little road trip away to visit friends, but I’m so afraid of being away from my own familiar environment that I had to postpone. It’s ironic, because the accident happened in my apartment – my safe space. But I know the space and am comfortable here, and I have all of my equipment around me. I can’t fathom being away from my safe space right now. And it’s because of this fear.

I think it’s important for us to realise these fears and process them. I need time to feel like this, and to slowly rebuild my level of comfort to the point where I can handle being away from my safe space. While I’m a big proponent of jumping into things and taking chances on a whim where it’s warranted, I do think that being cautious is sometimes what we need. I am more at risk of injury because of my disability. I live with this fear all the time. But I’m at an even greater risk right now when I have less confidence. I need to build my balance back up a bit after the fall – and bolster my confidence – to the point where I can get past the fear like I normally do. I should be practicing more caution at the moment.

And I think this is the same for everyone. Some fears are bigger, some are smaller. Some we deal with every day, others we have to confront much less frequently. The point is, whenever we do have to confront them, I think we should take a second to try and rationalise it. We can ask ourselves a few questions:

What exactly am I afraid of?

Why am I afraid at this particular moment?

Can I do anything to remove the thing that is making me afraid from my path?

And if not, how can I work my way around this thing that I fear so I can get on with my journey?

If we don’t confront them, we let these fears control us. But we all have the strength to turn the tables and control them. One of the first steps may be admitting it, either to yourself or to trusted friends. If you give a voice to it, that might help you understand what you’re afraid of and why you’re afraid of it. You’re the only one with the power to take control. 

For years, I’ve struggled to feel a sense of self worth. I’ve never been good at sport, because my disability has meant that I was never allowed to properly play most sports (and now I can’t even move enough to play). I can’t go to gym, again because of my disability; plus I get way too much enjoyment out of triple cream Brie; so I have a few extra love handles and my body is all weird proportions. No matter what I do, or how many different things I try, I feel like I’m forever cursed to have bad skin. And because of all that, I have never felt typically attractive, and, as a result, have felt largely excluded and separated from the gay community.

To add to this, because of my disability, I am incredibly dependent on others to assist me. I can’t make a meal, or put my clothes on, or do many of the other ordinary daily things we all have to do, without a large amount of assistance. I can only do a few very limited things by myself, independently. I sometimes feel like I am so dependent on others, and yet I can do nothing in return to help them.

In addition, I now move around in the slowest, most painfully awkward manner. And still, every time I sit in my wheelchair, I feel like it’s an invisibility cloak. As soon as I am in it people no longer see me. No matter that I’m a fully qualified lawyer who lives in his own apartment. People still turn to whoever is with me to ask about me, rather than asking me. And people wonder why I don’t like using it.

In my darkest hours, I have felt like I am forever destined to be alone, and unhappy, and useless, and that I am worthless. How could someone else ever love me – so why should I bother trying to?

It can take all my strength sometimes, when I start going down this spiral, to catch myself and remember my blessings.

Sure, I may not be typically fit, or skinny, or masculine, or attractive – but I was born with a decent brain that has allowed me to far surpass what many people told mum and dad I would be capable of in my lifetime. There are many, including many with disabilities, who have not had the opportunities that I have had to assist me in getting where I am in my career – to be able to go to good schools and meet the people I have along the way.

I also am the very opposite of alone. I may not ever have a partner, and that’s ok. But I do have an amazing network of loved ones, family, friends, colleagues, and more, who have joined me on my journey. We really don’t need a single, special person when we are able to realise that we have so many amazing and wonderful people who are there with us, and for us, and who bring so much love, happiness and kindness into our lives.

And more than that, for myself, I have to realise that my situation doesn’t render me unhappy, or alone, or useless. Only my attitude does. I am worth something. I could have taken my blessings, squandered them, and accomplished nothing. But I didn’t. I could have sat at mum and dads and given into the fear that comes with a progressive disability, and not bothered even trying to go to uni or get a job. But I didn’t. I confront my fears, and I go out into the world, and I get on with my life. I may not ever be physically fit, but my determination is 100 kilograms of pure muscle.

It can be very hard to remember when we’re in our darkest mindsets. But we always need to try and remind ourselves to be proud of who we are and what we’ve accomplished. We are all unique, special, amazing, and beautiful individuals. 

Unfortunately, the regularity of my having accidents has increased in recent times, given that my movement has become much more restricted, and so I’m more unsteady and can’t put my arms out to protect myself. Again, this serves to confirm the importance of appreciating little wins whenever I can.

It’s something that doesn’t always come easy though. Sometimes, the difficulty lies in the fact that we’ve got bigger dreams, so it seems silly to celebrate little and seemingly inconsequential things. But more often than not, at least for me, it stems from a deeper sadness or anger that I have trouble shaking sometimes. I know it’s bad for me to dwell on negative thoughts for too long, and I know it’s not really productive being angry about things I can’t change. But sometimes, I get stuck in a negative spiral and I find it harder to pull myself out of it. And I don’t think this is something entirely unique to me. I know, from speaking with friends and family, that this happens to others – maybe it’s even happened to you.

I think it’s really important to try your best to see the silver linings in little wins. For me, after a fall I had a couple of weeks ago, I’ve been pushing myself a little bit more each day to get just a little bit further. First, it was making it to the sink to be able to brush my teeth. Then it was making it into the shower, after a week of bed baths. Next, it was making it out of my bedroom to the kitchen to make a smoothie for lunch. Yesterday was a big day – making it into the shower without assistance, putting on some proper clothes, and leaving my apartment for the first time in weeks to surprise my mum with a visit. Each of these took several more days to accomplish. And, in reality, they might not mean that much to someone else. But I felt a little prouder of myself each time I crossed one of these off my list of goals.

It’s been hard for me to appreciate these wins sometimes, as I’ve been stuck in bed most of the time, I’ve been in pain, I’ve been more tired than usual after spending much longer periods in bed resting; and I’m recovering from a fall which, unfortunately, means I’m also very worried about what lasting damage may have been done and if there will be any additional deterioration of my physical condition. One of the difficulties of FOP is that, sometimes, it seems like I take one step forward and two back.

Sometimes, we have to try really hard sometimes to put that smile on our face and tell ourselves “you know what, that is a really good effort and I need to pat myself on the back”.

If I can do it, so can you. It can feel so good when you pull yourself out of the downward, negative spiral. Bringing yourself even a small bit of joy by celebrating a little win is so important. I’m not saying it’ll be the most elated, overjoyed smile or your happiest moment. Maybe it’ll just be a little smirk, and a small ray of sunshine. But if it stops the spiral, even temporarily, it’s worth it to try.

So give it a go. If you try something new and it works, celebrate that win for yourself. Set yourself some new, small goals to achieve and pat yourself on the back when you achieve each one. And try, each time, to keep that smile on your face a little bit longer.

Trust me, you can do it.

We’ve all had a lot of time alone to think recently, with restrictions forcing people inside and limiting our social contact with others. When we don’t have as much going on in our lives outside of our homes to distract us, we can sometimes end up going down a bit of a negative spiral. One thing that I know some have been thinking about a bit lately is mistakes.

Mistakes are something we all make, and we all make them differently. Some people make little mistakes, and some make bigger mistakes. Some mistakes are inconsequential, and some are more life-altering. Some people are more prone to making mistakes, while a small number of very lucky people can get away with making just a few.

I myself have made my fair share. And being more vulnerable than ‘normal people’ has meant that I don’t always get up, brush myself off and continue on as I did before in a physical sense.

Most recently, I was driving my wheelchair at night and accidentally drove off an unmarked step, fell out, and rammed my head into a beam. And I’d had a few bumps and bruises before that over my 26 years. From slipping over while running in flip flops on wet concrete, to running upstairs in slippers and catching my foot on the top step, to tripping down stairs in the rain at school, and, one time, getting so focused on a game of table tennis back when I was physically able to play that I ran for a shot, kicked a wall and broke my toe. And those are just a few examples.

Not all mistakes involve physical injury, which is true for everybody.

Something I’ve learned, perhaps more quickly due to having a progressive condition that is exacerbated by trauma, is that there’s not much to be achieved by dwelling on mistakes. We all make them. And depending on what the mistake is, chances are we might make it again.

For me, I have fallen over multiple times, and I will likely fall over again. Sure, some of these mistakes may have led to a progression of my condition, but it’s a progressive condition and so would have happened anyway. The only thing I can do to guarantee I won’t fall over is to spend my whole life in bed, but that’s not an option for me. It still wouldn’t stop FOP, but it would stop me living life.

Everyone has always said that we’re supposed to learn from our mistakes, and that’s true in some cases. I fall over doing something and then I change the way I do it, but that doesn’t stop me falling over another way. I think the more important message to take away from our mistakes is how to move on from them, because we must move on. All of the mistakes we each make during our lives are part of the unique tapestries that make us our individual, beautiful and special selves.

We never know when our time on earth is up, but we do know that it’s inevitably going to be a relatively short time.

Photo by Agê Barros on Unsplash

So why should we spend it wallowing in self-pity and feeling bad about ourselves? The honest truth is that we were the ones who made the mistakes. It’s done, and we don’t have a time machine to go back and undo them. And we’re not going to achieve much from overanalysing them and trying to blame someone else; or, conversely, from sitting around blaming ourselves.

But it’s not the end. We all have the strength and ability, metaphorically, to get ourselves up, brush ourselves off and keep on living. We are lucky to have this fleeting time on earth, so we need to make the most of it and not waste it!

I get a lot of attention for my shoes. I like shoes for a few reasons. Shoes can really pull together an outfit, or they can be a statement in and of themselves. Another thing I like – as a male lawyer, there can be limited opportunities to personalise an outfit, but shoes is one thing you can do a bit differently. Even something like wearing a nice pair of navy brogues when all other guys are in black or brown shoes – it doesn’t make a really loud statement, but just individualises your outfit a little bit. Another handy thing – if you have a few extra cheat days, and everything else is getting snugger, your shoes will still fit!

On top of these, my shoes fulfil another, more important role for me and my overall frame of mind. When I go out into the world, I allow myself to be put under great scrutiny. For as long as I can remember, I’ve had people looking at me whatever I do and whenever I go anywhere. I know objectively that I am not ‘normal’; that I move very differently; that I move a lot slower and extremely awkwardly compared to others. It can be weird sometimes for me to think about, because as much as the bone caused by FOP progresses and changes all the time, the FOP itself has been a constant for me. It can also be hard, generally. As I’m sure many people would attest, we oftentimes don’t like to be stared at if we’re just going about doing our own thing and minding our own business. On the other hand, we’re human; we’re naturally curious when we see something new or unexpected and our first reaction is to stare as our brains try to make sense of it.

For me, when I am doing my thing, and slowly and awkwardly shuffling through my life wearing these interesting and different shoes, I’m telling myself that people aren’t looking at me because of my FOP but because of my shoes. This brings the staring back onto my terms. In this way, shoes are like my armour for getting through life. 

The truth is, most of us have things about ourselves that we are insecure about, and we engage certain protective mechanisms when we go out into the world so that we can put our best version of ourself out there and not focus on what we are, perhaps, less confident about.

For some, like me, it might be an item of clothing or jewellery that we wear for people to focus on. For others, maybe it’s their witty and loud personality, and when they are at home alone they are perfectly happy being quiet. For others, maybe it’s unusual or ever changing hairstyles they use to distinguish themselves. In my experience, there’s usually this sort of message going through our heads:

“If people are focusing on my shoes/jokes/hair or something else, they won’t look as closely at x, which really bothers me”

The point is, we are not perfect, and it’s ok to admit that. Having insecurities doesn’t make us weak, or pathetic, or vain – it makes us human. And whatever defence mechanisms we have to help us deal with those insecurities and make us feel comfortable are part of our instinctive reaction, as people, to these sorts of problems. By doing these things to help us deal with what we would otherwise worry about and focus our attention on, that allows us to consciously focus much more of our energy on what we need to do – like our jobs. If I spent my energy worrying that everyone was staring at me because of FOP, I’d never leave my bedroom. This is one of my coping mechanisms, and it works for me.

What’s your armour? Do you have one? Do you need one?

It’s really not a great time to be an extrovert at the moment. Many people out there are struggling with these new rules about social isolation. People are regularly posting on social media about how it’s driving them crazy, or angry, and how much this new normal really sucks. But what many fail to realise is that there are some who have been forced to deal with unintended social isolation long before the existence of COVID.

For those like me; who live with a progressive, physical condition; isolation has been a part of our lives for sometime, and will continue to be a part of our lives long after the rest of the world has forgotten about what they had to do to survive this pandemic. For most, once this is over, and social gathering restrictions are relaxed around the world, they can go back to their normal routine of going to work and then going out – eating, dancing, socialising, partying, whatever they want to do. For me, it’s not that simple.

While I am able to do some of those things, sometimes, there are many more logistical issues to consider, and those issues are regularly changing due to the progressive nature of my condition. It’s like playing a board game, and every time you finally figure out the rules, the rules completely change and you have to go back to square one. Sometimes, these issues will become too overwhelming, and then despite my desire to go out and be social, I won’t be able to. Yes, technically it’s a choice for me not to go, but it doesn’t feel like a choice at the time. Also, sometimes it’s worse, and the pain and exhaustion is too much that you can’t face going. Also, sadly, sometimes it isn’t a choice and you are physically unable to do what all your friends are doing, but you don’t want to stop them as you know they love doing it and you used to love it too. These are some incredibly emotional and disheartening conversations to have with yourself. On top of all this, thanks to FOP, I have more limited energy nowadays and have to prioritise conserving that energy for my job.

As a result, I’ve needed to learn some coping mechanisms. And I thought that some of these mechanisms might be useful to others, as we adapt to these unusual times with everyone isolated.

1. Do things that bring you joy – even if it’s small – and find a creative outlet. Every couple of days, I like to pamper myself with a nice face mask, pop on a guilty pleasure TV show and relax. Kind of like my version of meditation. Find yours. I’ve heard of people at the moment starting to bake or cook, or pick their paintbrush back up, for the first time in ages. I’ve heard of some starting to learn knitting or a new language; I even have a friend who’s started DJing. Clothes are still one of my creative outlets, but that has become less important as nowadays I go from daytime pyjamas to nighttime pyjamas almost every day. But I can still get a bit dressed up sometimes, like when I put on some of my usual clothes to have a Skype catch up with friends. I didn’t have to, and they probably didn’t notice, but I did it for myself. It brought some semblance of normalcy and joy for me. The point is, whatever you think would work for you, give it a go. And if you don’t have one already, try something new. It looks like we’ll be living like this for awhile, so try out as many new things as you can until you find your ‘thing’!
2. While it certainly can’t replace actual, in-person contact with other people, there are more options now than ever before to help you reach out to people and stay in touch with friends, colleagues and loved ones. With Facebook, Instagram, Skype, FaceTime, Zoom, and any other number of mediums to do so, don’t forget to maintain your relationships. Also, if you do live with someone, be kind to them as you’ll probably be stuck together in social isolation for awhile. For me, this is giving my sister a small glimpse into my struggles. Also, I know some of what she’s struggling with adapting to this new norm, as I had to adapt the same way long ago. This gives me more empathy when she’s having a bad day. If you and your partner/friend/roommate are both new to this, remember that you’re both facing some of the same struggles. Be quick to forgive each other if you hit a road bump, try not to take it out on them if you’re having a bad day (as chances are they might be too), and don’t forget to make time to spend together. Like over this past weekend, when my sister and I spent ages playing games on the Wii together (things that make you both laugh are encouraged in this instance!).
3. Finally, I read a post the other day that really resonated with me. Staying positive isn’t about being outwardly happy all the time. That would be a miracle for anyone! But don’t lose hope that better days are coming. I’ve found my hope wavering of late, because it has been just so much to deal with, with my physical disability continuing its relentless claim over my independence and taking so much from me the last few years. But I haven’t given up yet. Hope can be a tiny little ray or, for some people it may come more easily. However much you have, hold onto it dearly. There is still magic and beauty left in the world, and better days will come soon enough. Be patient.

Hopefully you find some of these tips helpful! Don’t hesitate to reach out.