Disabilities and Capabilities

Last month for limb loss awareness month I asked if anyone had any questions for me and was asked a great set which I enjoyed answering, as I’ve never really done that before! Amongst the few I was asked these two: ‘how has being apart of the disabled community shifted your life’ and ‘what are the main differences day to day?’ 

I thought I’d combine the two and share how it feels to adapt to life as a young disabled woman, but not in the ways you think so obvious... 

Pain.

Let’s get the obvious out the way, it’s not like I’ve mentioned this before 😅. I can be in lots of pain and discomfort, and it’s sometimes so random. I’ll have days where it hurts too much to walk to my local bus stop, ruled by aches and sores. And then I’ll have days where I don’t really think about my leg at all. So, the difference in my life now is the way it's governed by my leg day to day, but in a random, unpredicted way. I wrote a post touching on this a few weeks ago, so I’ll save the pain filled chat for another day. 

Exhaustion.

One topic to add to this discussion is the physical toll this takes on my overall exhaustion and keeping up with life, something I’m feeling the effects of particularly well right now. It’s a Saturday night as I write this, and I was just talking to my mum about why I feel so burnt out from the last 2 weeks, which has been a particularly busy time work wise. But I’m sitting here, completely exhausted like I’ve either trekked Everest or done a 4-day festival (I know which one I'd rather). I ask my mum, is this it now? To be shattered after not having a day off for two weeks? My mum kindly reminded me of a statistic that we were first told about when I was in hospital: an amputee expends 30% more energy than normal. This means the average task takes more energy out of me than an able-bodied person. 

Disabilities aside, I’m becoming increasingly content with accepting I’m an introvert. It's a 3>1 ratio of the time I spend recharging my batteries vs the actual social event. Throwing into the mix a sore leg and extra exhaustion, I do find myself staying in more and being more selective, which my introverted mind sees as no bad thing!

Laziness.

One incredibly frequent part of having a prosthetic leg for me, and something I often touch on, is the link between physical and internal battles that I face every day. It goes without saying: it is always more comfortable to take my prosthetic leg off when I can. This is almost always when I’m at home, and sometimes out for dinner if I can, too (and in more dire times, waiting for a train etc.). But on the topic of staying at home, when I’m immobile with my prosthetic Leg leaning next to me and my silicone sleeve off, I feel unhelpful, useless and lazy. The strange mental repercussions of having one, slightly big and important factor that gets in the way (having to put a piece of metal on the end of my leg to get around...) makes it harder to get up and do things. Getting out of bed in the morning, jumping out and opening the curtains, etc. it's like it sometimes takes a colossal upheaval of motivation just to do the simplest of tasks. The physicality of sitting, leg off, therefore unable be the one to run and get the door when I’m with people for instance. Relying on others to get things for me. Now I won’t sit here and not admit there are times it is in my favour, too. Yes, it sometimes is nice to not be the obvious choice for the post-dinner chocolate run. Guilty! I’m not sure if any other Amps can relate or I actually am just a lazy toad, but this is such a part of my daily life now, so I thought I’d include this potentially niche insight.

Tube seats.

Another thing I battle with living in London is the tube/overground and my eligibility of having a seat. I'm almost always too shy to ask for one, and if this is in warmer weather and my leg is visible, the shyness in me is banking on someone to offer first so I don’t have to speak. After minutes go by and I’ve still not been able to ask, I (probably unfairly), fill up with disappointment or frustration in the people I share the carriage with when no one then offers. A counteractive annoyance which stems from my inability to just ask. In the winter months I’m wearing trousers, so it’s practically near unfair to expect anyone to realise I’m disabled, because I look ‘fine’ 🧐 everywhere else, right? So really it is up to me to muster up the courage to explain and request a seat? But there’s this weird twinge in my head every time I’m faced with a busy train and nowhere to sit, like I don’t want to draw a single ounce of attention, so I just endure the pain and count the minutes down. Situations like this crop up a lot. again being a nuanced side of disabled life.  Some people say ‘just wear an “I need a seat” badge’, ‘just ask for f*cks sake’, and ‘people don’t offer because you carry it so well’. I think I've just decided whilst writing this that I’m actually annoyed at myself for not asking, but blaming the public instead. Maybe I should just buy that damned badge.  

Physical vs mental.

My two jobs consist of being on my feet a lot. I also am desperate to keep my level of fitness up, so I’m cycling to and from work to do this, which I’m so in love with as I feel it’s given me a new sense of agency that I’d temporarily lost over the last two years. But again, at my mum's reminder, this is going to be another thing that tires me out. And with my brain still acting like it’s housed in an able body, I’m in a funny transition period where life is picking up again, but my body can’t handle all that I think it can.  

Truthfully, I think we’re all in our own version of a transitional phase, trying to figure out the pace which works best for us! And it’s okay if we aren’t as up for the lifestyle we used to frequent, or if you really don’t recognise the person you are right now. We’re all entitled to a massive load of mitigating circumstances and need to allow time to let ourselves grow. We’re all still finding our feet (actually my foot got left in Clapham🤢)(too far? I’m writing this at midnight tbf). 

But moral is this: life in the disabled lane is proving difficult, but in a more nuanced and specific way than I ever realised. It’s providing easier burn out, (physical + mental). Damned if I do damned if I don’t kinda thing.  

In turn, this gives mental setbacks -  

I’m not seeing friends as much,  

tired all the time,  

can’t say yes to everything due to pain, which I hate mentioning because it’s ‘boring’ (it is).  

So, I then question my social life, and on more sensitive days who I even am as a person! I want to carry on as normal, but finding the right pace is the current issue. But in true Grateful Peg fashion, I really do see all these new disabled access bumps in the road as part and parcel for all the good it’s given me. Without these life experiences I wouldn’t see the world as I do now. I feel grateful for my disability, for all the wisdom and appreciation of life that has come with it. I’m here, a proud amputee, when I could not have been here at all. No matter what hardships you’re given, we all have it in us to keep going. I’m not saying life isn’t hard, it’s shit at times/ but it makes the better times mean a whole lot more. You realise life is so precious and beautiful when you're faced with adversity.

If you can’t be bothered to read this long post, what I’ve said is: Life is a hell of a lot harder with a disability, but I wouldn’t change it for a second!!