Please don’t judge, you don’t know what it took for someone to just get out of bed.....
Please don’t judge, you don’t know what it took for someone to get out of bed, look as presentable as possible, face the day, and face the world. You know nothing of their daily struggle and what personal mountains they had to climb.
The simple things you take for granted I now struggle with…
Little did I think at 40 years of age that my walking cane, crutches, and shoehorn would be my favourite accessories as without them I wouldn’t get my shoes on and get out and about.
Below is a little insight into my life….
The daily struggles start straight away when I wake up. I no longer jump up out of bed. First thing I reach for is my walking cane, who am I kidding it's my phone. Then after a quick nose on social media then I reach for my walking cane. Getting dressed is a pain, try closing buttons with fingers you’re losing the feeling in and with a weakened grip and hand muscles, it is not easy. It’s like reverting to being a child, I need help and the only thing that’s different is you know how to do it; you’re just physically struggling. Don't even get me started on skinny jeans, and leggings, the person who designed these should be shot. These days a good day is putting on my knickers and jeans without falling over on my fat ass. It’s not a very sexy look but somehow I do manage to get into them. I have learned to take it as a win and an achievement if I don't fall over. Other days are just melancholy where I mourn the loss of the old me.
The Simplest of tasks can now be physically draining. I’m always in a constant state of tiredness. Fatigue and pain are such a common occurrence that I just expect it now. I am so used to pain that I walked around for weeks with a broken ankle after a bad fall. So fast forward six months later my ankle is still in a support, as my body takes so much longer to heal so I am still walking aided by my crutches and doing physio. It’s a rare day if I’m not in some sort of discomfort. I even have to think about where I sit during the day as I can struggle getting up from low chairs, especially if I'm alone. In the comfort of my own house, I have a little more freedom as I know my environment, and this is my safe place. Sometimes I forget my legs are weak and I go to walk without my cane and next thing I’m leaning up against a wall, table or chair trying to stabilize myself and find my balance. A strange one that only hit me recently was my friend had a baby and I can’t get up and walk around with her in my arms to console her when she cries. You have this innocent little baby looking up at you with tears in their eyes and your totally helpless it’s both soul destroying and heart breaking.
On a positive note, I’m lucky that I was given the opportunity to work part time from home. I’ve a home office set up and honestly it was one of the best things to happen for me. It helps me keep my sanity and I get to feel normal. I can hide behind the laptop and keyboard, and nobody knows any different. I feel good about contributing to society and having an income. Plus, it’s a welcome distraction from the clusterfuck of emotions I feel between anger, shame, and guilt. Anger that this has happen to me. Shame at my body for letting me down especially when I fall out in public, as it’s embarrassing. Finally, the one that hits me the hardest is guilt, for those who love me having to watch me deteriorate.
Every time I leave the house now it needs to be planned. I no longer feel comfortable or safe leaving the house on my own. I have lost my confidence especially since I broke my ankle. Also, living in a Country, in winter that gets so much snow doesn't make it any easier. Trust me, there is nothing safe about being out and about on crutches in icy and snowy weather conditions. Just going out to the shop or to eat takes planning and research. Are there accessible toilets in the buildings, disabled car parking, lifts ramps etc. These are all the questions I need addressed before I leave the house. Nothing rarely happens spur of the moment these days as I’m constantly on google researching locations and venues.
Over the years I have missed out on holidays, parties, and functions due to the lack of accessibility. I personally now hate weddings or dinner dances, where I am the one always stuck in a seat watching everyone out dancing and enjoying themselves. I used to back in the day before I broke my ankle go out dancing with my cane hence where the name for this blog came from. I have been known to belt out "everyday I’m shuffling" after a glass or two of wine. I am extremely lucky to have very accommodating family and friends who try to always meet my needs, and make sure I feel included when they can but sadly this is not always possible with some venues.
It really frustrates me and it’s sad to think even in this century when it comes to accessibility and inclusion, we still have so much work to do.
So next time you’re out and see disabled parking be respectful and mindful that people who are disabled need to use disabled parking and need disabled facilities. Please leave the valuable parking spaces and the disabled toilets free for people like me…..
Siobhan Malone McBarron xo