All social media usually shows is the rosy side of life. I do try to post about the whole picture around living with a medical fuck up acquired disability. But there are always things you don’t see when you read about the rosier side of life.
You don’t see the tears. The doubts, the fears. You don’t see the stress and anxiety that consumes all my energy.
Psychological harm feels like a life sentence. I remember the time when I had two feet and not even a smidgen of the worry and stress I have now.
I remember when I cruised through life easily. Nothing would stop me. Now I am confined by my ability to find energy. Energy from a life that consumes much more of it. Energy consumed 4 x the previous levels just to walk.
Doubts and fears about whether I can do that thing. What now people will think of me. How much is society judging me? How much of a battle will I have every time I try something new, go somewhere new, meet someone new.
Nothing used to stop me. The sky was my limit. Now I am limited by this disability. One I did not ask for, did not deserve and tried my utmost to prevent. Caused by people ignoring me, calling me stupid or ignorant.
You don’t see the unexpected tears, and fears, there to spring out at me at every turn. I arm myself for battle and still it is not always enough. But carrying all that armour – it wears me out too.
Then I spend the next wee while thinking I SHOULD be able to do more, be more, why can’t !?
Every time I step out the door my mind is going 100kmph. What accessibility will there be? What mobility aids will I need? What footwear will be best? What will people say, think, do, will I have access, what if I don’t. The list goes on and on.
I even had to change my dentist post amputation because they are on the first floor and don’t have a lift.
The list goes on, and on, and on.
All the while I am keeping a lid on all this, putting a smile on my face and continuing life. I pretend to be OK, but in reality I’m not.
I’m angry. I’m tired, I’m upset, I’m fed up.
Am I good enough, cheerful enough, strong enough? Am I enough?
In theory I know that most of this is nonsense. Of course I am enough. But truthfully my brain does not always believe this. I feel like it is out to sabotage me.
Swimming was my therapy. In fact exercise in general is my therapy. But I fight myself every single day to get it done, where once I would be gladly skipping out the door and didn’t lack motivation at all. I often get asked what motivates me?
Honestly? I have a fight with myself daily.
I don’t want to let this beat me. Let them defeat me. It’s hard though, very very hard.
I cant be bothered. I’m too tired. It’s too wet, I don’t have time, It will be too painful. I have a million excuses why to not get it done. I have lists, targets, goals, apps, reminders, calendars, all this just to somehow sometimes get me out the door and doing exercise.
It does not come naturally like it used to.
All the while my PTSD sits there in the background, ready to sabotage me at every turn. Can I control it? No. Can I manage it? Sometimes. Will I beat it? No. I will always have it there chipping away at my confidence. It’s up to me to keep finding ways to not let it.
Never forget this. The physical loss of my leg is only the tip of the iceberg.
there are always things you can try out or do something new, it’s just a matter of finding what works for you in the present situation, and not dwell on what you could do before.
It’s not always good to compare where you are now to where you were after a major setback -you end up just reliving the trauma of it all.
So start today, and aim to be a bit better at whatever you are doing, tomorrow..
I completely agree. I get up each morning aiming to do exactly this. Not as easy as it is made out to be though. X
I can relate to a lot of this and just know that you are entirely valid for feeling this way. Society judges me all the time but I just have to remind myself that they’re wrong. This world was created for nondisabled people who all follow nondisabled mindsets that everyone has to look and act as much as possible like them. Living my Disabled experience helped me to realise that we have to make our own way. My life won’t look like theirs ever again – but that’s okay. I do things my own way, move at my own speed, and create my own rhythm. Society will say it’s wrong because it’s not like everyone else but I don’t care – I make my own way. As soon as I stopped trying to be as nondisabled as possible and accepted my body for the way that it was and allowed it to work in its own way – things started getting much better.
I can empathize some. I used a wheel chair for a while too. It is discouraging. I wish things were quite different for you. I had a therapist offer a suggestion once. She said rather than try to make each and every day really postive and signifcant allow yourself each week a few days off. To just be okay with moving at a slower pace than desired and not doing all things one hopes to accomplishe and to feel down. Plan one day you allow yourself to feel tired, sad etc. and then the next day you work to make it a good day. One day and one day off. It is not good to push every single day. Over time the off days tend to become less, perhaps to just one or two days a week. Hugs to you!