The story of James

I live with a rare disease, PIK3CA Related Overgrowth Spectrum. Technically it’s just overgrowth, but for me it’s had a knock on effect on my vascular system, causing severe pain in my legs. Mostly the right leg.
This is my story, about how I deal with it:

When was the last time you felt pain?
Not a knock, cut or a bruise
But real pain.
Pain that burns or pain that makes you feel sick.
Pain that feels like blades embedded deep in your flesh.
Not just anywhere, but in your legs.
It’s not just temporary pain, it’s every day. Never getting a break from it.
How do you find your escape?

We all have a place we go to escape things. Maybe it’s somewhere we go to be alone, maybe it’s a mental escape.
For me it’s both mental & physical.
The place I go, when I’m there, the world outside doesn’t exist.
A place I can focus. A place I can push my mind & body to my limit.
That place is the gym. I’ve been going for years, but it’s only the last year & a half that I’ve had more determination than ever to make change.
My space where I focus on my fitness & health.
I believe that if I didn’t have that, my life would look very different.

I take MST morphine daily, but it is never enough. It doesn’t cut through the pain in the way I need it to. Most days it’ll take the edge off the pain & some days it feels like it hasn’t done anything at all. Those are the days that are hard. But everyday I make the choice to never give up.

July [2021] last year I put myself on this journey to start that change. Build muscle, to be fitter, but mostly, to just feel more confident within. I’ve always wanted to, but didn’t make the move.
School was hell. Growing up I was judged ‘cos I was different. I never took opportunities to do things I wanted because I was made to feel like I wasn’t capable of doing those things. From other school kids to friends & some family members. That ended up staying with me for a long time.

But going to the gym is something I enjoy. It’s not just about building a bigger, better body, it’s about creating a better diet, to feel good & to look after myself & look after my mental health.
It’s a challenge on a daily basis, but consistency is important.
Since July I’ve grown. Not just physically but mentally. I’m happy with my achievements & friends have noticed my more positive state of mind.

With help from my personal trainer, Curtis. I’ve learnt to recognise my achievements & not pick on the negatives, which is something he felt he needed to say to me. Because I’ve always judged myself in everything I do, never feeling good enough.

The days I go to the gym, my attitude is ‘Do better today than last time’.
It’s something I really enjoy.
My strength has improved really well. I work as hard as I can.
Creating the ache, the soreness, the burn is how one progresses.

But, for me in those workouts, I have to go deeper.
There’s a saying…. Fight fire with fire & it’s true.
I fight my pain with pain.
I push myself past the ache, past the burn, past the pain & into it. I create a whole new level of pain…
It’s the ’artificial’ pain that, for a short time, gives me my escape & relief from the continuous real pain in my legs.
It’s as if I forget. It’s like I override what’s real with something else. It may be temporary, but it just feels so good at the same time.
Just for a while, It’s as if the real pain is not there.

When I’m with Curtis he’ll push me as far as he knows he can. But when needed, he’ll push me further. I push myself further too.
I like to test my breaking point & see if I can push myself to go deeper into the pain.
When I’ve completed the sets & I’ve pushed past the limit & gone as far as I can, the sudden rush of burning pain I feel from the exercise is so immense, sometimes I laugh it out.
That seems an odd thing to do. But we all deal with things differently. Curtis laughs because I laugh. He has a sense of understanding & I appreciate that.
There’s a fine line between good & bad pain. It can feel like a state of hell, pushing myself that far. But with a goal in mind I focus on that.
I get my mind in that place that I don’t think anyone else can understand.

Finding enjoyment in something, anything, that can take us away from the pain, the mental torment, while improving our well being is important. Especially those living with a rare disease. We can sometimes be misunderstood.
Whatever type of workout I do, just focusing on getting real benefit from it is enough for my mind to find some peace.

I will keep pushing myself further, for progress, my health & mental health.
Mental health, something we don’t talk about enough. But do we really do a good enough job at managing it ourselves in silence?

Maybe some days it is a dark place I go, to find my relief. But living with this rare disease brings it’s dark days. So is there really much difference?

I know members of our community who are hiding themselves away & suffering. I know the feeling. ‘cos that used to be me.
A rare disease is what you have. Don’t let it rule what you are.
P.R.O.S is what I have.
Bodybuilder is what I am.

So… No matter our circumstances, our challenges or disabilities, our dark days or demons that walk with us.
It’s important that we make a choice. A choice to be happy & do the things that we need to do.
‘no matter what happens, I’ll never be defeated.’