Hello, I’m Shannon’s friend, ‘Ruby’. I have Type 1 diabetes, with suspected undiagnosed neurological conditions. Type 1 diabetes is meant to be manageable and meant to let me live a “normal life”. But I call bull on that. It’s definitely not. I also am a carer for my mum who originally had issues with mobility and tasks from arthritis but then she had some big ol’ strokes.
So they’re the only insights I’ve ever had looking into disabilities technically so it’s not much of value to anyone. But I do know how it feels to have several heavy pieces of mobility equipment roll over your toes. And what it’s like to be smacked in the face by a ceiling hoist. And be peed, pooped and vomited on? Yeah it’s gross to most but not an issue for me, it’s daily life for us. But also it’s kinda in my upbringing to not view stuff as a burden because I care.
Looking After Furry Members of the Family
My first pets were abused and rejected by many because they needed help. One blind and was a “wobbly cat” and one deaf and definitely had some form of cat ptsd. They needed someone to be their carer. While it’s not the same as caring for a person, it developed my empathy and understanding for when I became a carer for my Mum.
I had to adapt to make these cats feel safe and so they could live a quality life. They weren’t suffering, they just needed help. Like sure, having to hold your cat’s legs so he would be able to eat without falling took ages; the lad had to eat and he is family. Having to find cat toys that could work for him so he could experience joy, having to walk in front of him clapping one step at a time for him to find you and follow you. Make sure he didn’t walk or get the zoomies into a hard surface. Having to hold my other cat still while she goes to the bathroom because she falls over and gets it all over herself.
And with my dog, she was fully capable of jumping and running but I had to carry her and lift her onto surfaces so she doesn’t suffer. She has now passed away.
People’s Comments On and Me Being a Carer for Mum
Having diabetes myself, I understood my Mum’s condition enough to be her carer. But it doesn’t make it any easier. The hardest part of being a carer is other people. Strangers mostly. People tell me I’m brave or so thoughtful for caring for such a burden right in front of my mum. It made her feel guilty because they think she’s unaware of her surroundings or simply don’t care that she’s there. It’s not a chore or a burden, it’s daily life and a routine to me.
They also though it was totally OK to push her (in her wheelchair) out of the way like a fucking shopping trolley. Imagine someone came up to you and grabbed your wrist, pulled you and dumped you somewhere! It’s kidnapping!
Ok, it’s not. But it’s damn right disrespectful. You wouldn’t do that to someone who isn’t in a wheelchair, why does the chair make a difference? And when someone does that without prior warning, or even asking and suddenly you’re not where you are, it’s incredibly stressful and disorientating.
Some people got my mum’s hopes up to stay positive but all that does is make her suffer even more when reality hits her. My mum is never going to walk again, and won’t ever get any movement back on one side. She will always need a carer. Our job is trying to keep her body flexible on that side. But people keep coming along and telling her that they knew someone who magically walked again not realising the severity of her stroke.
Accessibility struggles
With my mum being in a wheelchair, there were also accessibility issues. Steep ramps, cars parked at dropped curbs or the curb is too high. Broken down lifts or the accessibility route is too far away. Pavements are lined with stones or the wheels get stuck on the terrain. Even with 3-4 physically able bodied adults we can struggle getting my mum into places, especially without causing a lot of attention and needing a lot of time and support.
Ignorant Medical Professional Care
I don’t trust the medical industry at the moment because of second hand and personal experience. My mum was turned away from A&E while having a smaller stroke because they didn’t believe her. She had a large stroke in the night at home and then they ignored us. She then had several more and never was able to walk again. This has happened several times when asking for medical help.
For my mum’s most recent stroke which she had on her working side of her body the paramedics mocked us and said “it’s a social issue”. It took 3 sets of paramedics that day for her to be taken in and for them to realise she had a seizure and a stroke.
I feel my own personal diabetic team is unhelpful and unprofessional. I ask for help that I do not receive, and then because I do not receive the requested help, I fail to keep my health as it should. They blame me for this, no matter how often I have asked for help or tried to explain to them and I am struggling to get them to switch my team.
My GP also doesn’t understand me. I think I am neurodivergent. My friends who are neurodivergent think that I am, but my GP is linking it down to “anxiety” and “depression” only. Symptoms that many neurodivergent people have with their condition. But my GP refuses to refer me, telling me that I would be dangerous and not able to be a carer if what I said was true. Private assessment is so expensive so unless I can convince my GP that I am neurodivergent and they’re wrong, I won’t get that referral. Recent GP update opinion is that its not anxiety and depression, its “just” social anxiety.
Mum’s views on her disability
She didn’t like it when people thought she is incapable of having a conversation. Just because she needed a carer and monitoring didn’t mean she has no functionality at all. People looked over her and to whoever is pushing her. She felt that she often gets viewed like a “garden gnome” as people tend to not look at her to avoid staring but also therefore ignore her existence.
“Don’t push my fucking chair” she didn’t like people pushing her chair unless she knows them extremely well/cares for her. She prefers for people to let her know when she will be moving forward/backward when someone is pushing her. It’s so she knew who was there and that it isn’t a stranger.
Bonus lil thing
We once had someone push in front of us in a queue because “Well its not like you have to stand here ages”. We don’t have more hours in the day just because my mum is in a wheelchair with a carer by her side😑.
Note
Not long after this was written, Ruby’s mom had unfortunately passed away.