So it’s the new year and I’m going to try to get back into posting blog content!
I’ve realised I’ve been posting lots on my social media but less so on here, which is strange as I actually love to waffle!
Recently I had to share some old photos of me pre- my disability for something & it was difficult - I looked so different, but I also had to remind myself how unhappy I was mentally and how far I've come!
Sometimes I think about who I’d be without my disability and it makes me a bit sad. I love the idea of the ‘Butterfly effect’ and I really believe every small decision we make affects our lives stories. Interestingly, I feel if I intertwine this with having a disability, I often really wonder where my life could be.
‘The idea that something small, like getting coffee, can have much larger effects, such as altering your career is called the butterfly effect. The butterfly effect rests on the notion that the world is deeply interconnected, such that one small occurrence can influence a much larger complex system.’
Disabled people who become disabled a lot later in life often grieve for the life they used to have, but for me being disabled so young I find I almost long for all the things that I’ve already missed out on and the things I won’t ever be able to do.
I think it’s important to think positively about who your disability makes you. For me I think that’s- Strong. Empathetic. Resilient. I have the ability to do much of what able- bodied people can do but I can do it whilst being in excruciating pain or crippling fatigue.
I missed out on my teen years massively due to my mental health being abysmal but that doesn’t mean I’ll miss out on my twenties just because I’m reliant on my wheelchair and carers for my independence- I’ll just have to adapt with navigating life a different way.
When I look back to a time before I was disabled, my perspective on the world was much more negative. I struggled to leave the house due to my mental health- then my physical health made it hard. Now when I leave the house I really try to appreciate every single moment- going to the supermarket or having a coffee with a friend for me is a wholesome day out and before that would have never have been the case. Being disabled I have met the most amazing people and learnt the most amazing things, my mental health was at an all time low and now I feel so detached from that.
If I hadn't encountered my disabilities at such a young age I don’t think I’d have half the confidence I have now. People think it's so sad that I'm disabled and young but I truly believe it's the one thing that saved me. I hate people looking at me- I always have- having Tourette’s & relying on a wheelchair, this was something I had to get over, overnight yes it’s hard but I did it. I have a bright pink wheelchair because- ‘if people are going to look it may aswell be because my chair is pretty’ - I would have never have had that mindset had I not had my disabilities- I would’ve felt sorry for myself, but there becomes a point where you can only feel sorry for yourself for so long.
Don’t get me wrong I have my days where I want to hide under my duvet & keep the curtains closed. My health is horrific at the best of times and I think about all the things I wish I could’ve done and watching my peers off doing amazing things is difficult. If I wasn’t Disabled would I have become a travel Nanny? Would I have travelled more? Where next? What Festivals would I have gone to? Where would I work? What friendships would I have made? Would I have lost the friends I did or would they have stayed? Would I be in a relationship with a rich, hot man who will fund my expensive travel lifestyle and build me the house of my dreams (joking ofc- still possible). So many unanswered questions.
So now I’ve finally got care support, I’ve made a bucket list. And it may seem atypical! While I don’t like the pressure of the whole new year, new me expectations and all that jazz- I do have a list of things I’d like to achieve in my life time. Now if any non- disabled person read this list they’d probably think I was an absolute loser. (I am a bit, but I know it so it’s cool) My bucket list is more of a life list- it’s got everything on there from a trip to Costo to the Bahamas, going to a festival to travelling Asia. We’ve got to be realistic and I’m starting small with the home- based tasks, but as a Disabled Person who relies on someone to help them get out the house even having this list is huge for me.
Having things to look forward to helps me get through the hard days & I think it’s important everyone has them too. It doesn’t have to be a trip to the otherside of the world, it could be something as simple as drinking more water or saying thank you instead of sorry more!
So take a minute and write a few down- I’d love to know what you put and maybe you can share them with me
That’s my thoughts for today!
L (and Trish) xxx