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.

Almost everyone has them, even if they won’t admit to it. For some, it might be a particular type of food, like ice cream when they’re supposed to be sticking to a diet or putting together a fancy cheese platter ‘just because’. For others, maybe it’s a TV show or movie that they know would be considered objectively ‘bad’ but which they still enjoy watching every so often. And for others still, it might be getting rid of ratty and scratchy old shorts they usually wear at home and upping their loungewear game with a nice, new, soft and comfy pair of sweats. This isn’t by any means an exhaustive list of guilty pleasures, but it gives you some indication of where my head is at the moment.

Here’s what I’m thinking though – why should we feel guilty about these sorts of innocent things? Doing any one of these, even doing all three of them together, wouldn’t make someone an inherently bad person – would it? Why do I attach all this guilt for indulging myself with these little pleasures?

Assuming the diet is self-imposed and not for medical reasons, cheating with a decadent milkshake, a wheel of triple cream Brie, a donut, or some chips every so often (once a week at least, if we’re being honest) won’t do us any real harm. Sure, there may be an extra bit of a love handle, but we can always make up for it by eating healthier foods and/or eating less at other times. On the other hand, does it really matter at the moment if we don’t make up for it right away? Most of the time these days, we are wearing clothes with elastic waists and having limited social contact.

On that note, given that we’ve been spending a lot more time at home, some of us are choosing to wear ‘daytime PJs’. So it makes sense that we would wear something a lot more comfortable and that we feel better in. For me, getting up and putting on something nice like these really comfy sweat shorts helps me mentally prepare for my day. During the week, when I have to get up and do a full day of work, I should give myself the best head start I possibly can, shouldn’t I? Also, when I have to catch up with colleagues or others over video, I want to look somewhat ‘presentable’. On the weekends, obviously, there isn’t as much mental prep required at the moment as they tend to follow a pretty similar pattern of food, sleep, reading, and TV. 

In terms of our guilty pleasure TV shows or movies, who cares if what we watch would be considered bad by someone else if we get enjoyment out of it? I spent my Saturday afternoon a couple of weeks ago sitting in my living room with my sister, and we watched the first two Transformers movies and polished off a packet of salt and vinegar chips – our favourite flavour! Yes, we had seen these movies before – many times. But it’s become a tradition of sorts that every couple of months, we devote a Saturday or Sunday to exactly this. It’s part of our bonding ritual, and we both equally love it. Also, we’re both not great at making decisions about what to watch, so this way we’re both happy and neither of us had to stress about making the choice. Rather than feeling bad about watching these movies, I should feel proud of the fact that my sister and I have such a good relationship that we both love spending this much time together. Not everybody is as lucky as us and is able to do this with their sibling/s.

So what’s this self-imposed guilt really achieving? Not much. I’m doing my job, I’m paying my bills, and my weekends are my time to do whatever I want with. I’m not hurting anyone or anything else, and I’m not breaking any rules. And yet when I treat myself with one of these innocent pleasures, it’s always tinged with a bit of negativity because of this guilt I impose on myself. So you know what? I’m going to try not to do it to myself anymore. I’m going to try enjoying these things guilt-free from now on. Wish me luck!

What are your guilty pleasures? Do you have a favourite bad song/TV show/movie/book, or a favourite cheat day food? Or maybe something else? Do you think you can try and enjoy them guilt-free from now on?

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?