This month is Cerebral Palsy Awareness month, so I have been writing posts around Cerebral Palsy for the disability part of this blog. This post will focus on what Daily Life is like for someone with Cerebral Palsy (CP).
If you do not know what Cerebral Palsy is, I explain it here. In short, Cerebral means brain, and Palsy means paralysed. There are different combinations of paralysis, and different severities. Not all severities look the same. I would be classed as Grade 4, but without knowing me, you’d not assume I am disabled. However, CP is very limiting, especially for those of us higher on the grade, and especially when we do not look like we’re severe.
I asked a friend with CP what she would like people to know, and she said looks can be deceiving, so let’s dig into that a little bit more.
Cerebral Palsy looks different for everyone. When I was at university, I was friends with an ambulatory wheelchair user who could use other walking aids for very short distances. My friend, Sophie A, is not an ambulatory wheelchair user and must use an electric wheelchair at all times. Sophie B uses a wheelchair occasionally but can walk if stops are possible. I have used a wheelchair a couple of times, but mostly I am able to walk as long as I can make stops.
The thing is, Sophie B and I do not look disabled on first glance. It is only after prolonged observation that you might realise that we are struggling.
Going out as someone with a CP
Going out and walking for an hour, with breaks in-between that hour, can knacker us out… not just for a short time, but half a day to a day later. And that’s if we had had rest days leading up to us going out.
As we walk, out bones scream at us. Each step I take, I can feel the shin of my left leg screaming at me. But I must press on or nothing will get done. The sole of my left foot aches… oh and I have right-hemiplegia. That means my CP affects my right limbs, not my left… but what that means for my left limbs is that they pick up the slack. The pain in my left side is not because of my CP in a direct way, but in an indirect way as my left side compensates for what my right cannot do.
The more days I go out, the less rest days I have, the more my body screams. Every time I socialise, I have to make sure that there’s days between where I can just stay in, give my body a chance to recover. If I have to go out a lot, I am in a lot of pain for days. Usually, the only way to get rid of the pain is with a bath but sometimes I don’t have time for a bath.
Even with my FES, I have noticed that I tire quickly. I can walk further now as the electrodes encourage my right leg, taking some of the pressure off my left, but when I do stop, it takes me much longer than it used to to recover and move forward again. In this way, I haven’t saved as much time as I thought I did with the FES treatment.
How having a wheelchair can also impact stamina
Sophie A also gets tired going out. She is in her chair for at least 16 hours a day. I’m sure we’ve all felt bum-sore before. Sophie cannot stand to shake that cramp off. She is fully dependent on the chair to get about. This chair has been made to fit her body shape and how she sits but services aren’t good, her chair is getting old and a replacement is not in sight… it was meant to be replaced 3 years ago.
When Sophie A goes out, she is constantly driving. It would be like being in charge of a car for 16 hours straight, looking for hazards… and we all know other people cannot drive or know how to be aware of their surroundings. Bare in mind, it is recommended to only drive 4.5 hours at a time with an hour break when in charge of a car. Just like if I stopped whenever my body screamed at me, wheelchair users cannot stop using their chair if they want to complete all of their daily tasks. It’s not easy.
Then, there is the act of getting Sophie out of the chair for bed, washing and other basic needs. She is hauled from her seat, swung in the air and lowered down, putting strain on her body as she fights gravity, often leaving her sore and in pain.
Everything takes longer with CP
Cerebral Palsy means everything takes longer. You see, most people have the use of four limbs. But CP, by definition, will mean 1-4 limbs will be affected. This means that we do not have full capacity and function of each limb.
I am quite quick at typing with one hand because I have had to learn how to type fast with one hand. I can type at approx 35 words a minute, just shy of what is classed as ‘average’. Not bad with just one hand. But I would probably be faster if I had the use of two hands. Sophie A also has the use of one hand but not all the fingers in that one hand, making it hard for her to type her stories at the speed she wants.
Carrying things from room to room takes longer. I have heard people wish for eight arms when their hands are full… I wish for two. There is a constant back and forth when I need to move my stuff from room to room. Or from fridge/cupboard to counter. It’s exhausting. Sometimes I wish I had a wheely-basket for the house but there’s not room for one.
With one hand, it is also hard to open things without aids, and to wash things like plates efficiently because the plate or bottle will move as I interact with it.
Limitations for daily tasks with CP
Cerebral Palsy often means that daily tasks come with limitations. This isn’t just going outside and moving around but the other things too. The daily house chores. The things that just can’t stop, like cooking, eating and cleaning.
Cleaning
I can’t clean my house. The chore falls on my dad, who—until recently—had a full-time job and then had to come home to vacuum, polish, dust, etc. This is mostly stamina and what people refer to as “elbow grease” but what I think means the strength in the needed muscles.
I would love to be able to do half the chores around the house, but can’t. When I have my own home (if that ever happens, cost of living being what it is), I know I am going to have to fund a cleaner. More expense for me as someone with CP because of the things that I cannot do properly.
It can actually make me feel bad, guilty and ashamed, like I should be doing more. But I also know that this is because society has taught me that I am a burden.
Cooking
With cooking, there’s a lot that I cannot do in the kitchen. I can’t feel external pain immediately, so I have to be aware at all times where my right hand is. Sounds simple, except involuntary spasms means that my hand will spontaneously move and I may not even know. I have been in classes where my hand has just decided to creep up as if to ask a question and the first time I knew of it was when a teacher would go: “Yes Shannon?”
I mean I asked a lot of questions in classes naturally, but to cover this up, I used to make one up or answer whatever question the teacher had thrown to the class. It got me known as a know-it-all and caused a great deal of bullying.
With cooking, I have to be careful where my hand is. But also be aware of my limits. I can never strain food like other people do. Boil in the bag rice is not something I’d be able to cook. Lasagne and pasta bake are hard to take out the oven… my cooking has to mostly be supervised. But I can also be creative.
To strain food, I use a chip frier in my saucepan, straining at the same time as cooking. I buy pre-prepared food like frozen and sliced veg and meat so that I can just chuck it in the pan. These creative ideas can be more expensive though.
Eating and drinking
I can’t use a fork as I always found it hard to have the strength to stick the tines into my food. For wet food like beans, I use a spoon. If food needs cutting, I need someone to cut it for me. Then when it comes to cups and glasses, I need to have the right ones or be creative. Pints need a straw, and some mugs will need a straw if the handle isn’t wide enough.
Unfortunately, a lot of restaurants will use mugs with narrow handles, which means I cannot grip it well. I think most people use their other hand as a way of steading a narrow-handled mug? But that’s not an option for me. And a pint is heavy! I can barely move it off the table.
It wasn’t until recently though that I decided it was alright asking for help to cut up my meal, or to just whip out a straw and be done with it. Even at friends’ houses, I used to be embarrassed to ask for a spoon to eat rather than a fork and I think this stems from being preserved and not wanting to be a burden.
How an off-handed comment can have a lasting effect
When I was in primary school (ages 5-11), I was made to feel ashamed by how I ate. You see, there’s some things you cannot do when you don’t have the use of both hands. One of those things is to use a knife and fork. So for dry foods like breaded fish, chips, etc… I would use my hands. One day, I was doing this in the school canteen when a child with an adult came by—I dunno, maybe they were new and looking around—and the child spotted me. I was probably about 9-10, she was probably the same age. She said: eeeeewwwwww, look, she’s eating with her hand! That’s disgusting, why isn’t she using a knife and fork!
To be fair to the adult, I have never seen anyone move a kid out of a situation as fast as that adult did, pretty much pulling her from the canteen. I would like to think the adult had words, but I dunno. Kid me wasn’t thinking about what the adult was thinking, it was thinking on the comment. Stuck on the words: ‘eeewwwww’ and ‘disgusting’. Even now, I hear the words sometimes when I use my hand, internally. I have to push it aside, aware that it was just one child who said it one time.
People with CP are tired
There’s a narrative in the media at the moment depicting ALL disabled people as lazy. The truth is, we are not. We are tired because every little thing we do takes longer.
What might take someone 5 minutes to walk somewhere would take me 10 minutes (and then I would need a sit down and rest). Sophie A would probably find it will take her longer than 5 minutes because she needs to find the parts of the pavements that are lowered for pushchairs and prams… because I doubt they had wheelchair users in mind when they made the pavements.
Moving things from room to room will take me longer with the use of one hand. For Sophie A, there’s only so much stuff she can put on her lap without risking dropping it as she needs her one hand to move her chair.
Believe me, people with cerebral palsy want to work. We also want good health and not to be tired. We’re not lazy. We work hard each day just to fulfil daily tasks and it knocks us about. Adult life is hard without CP. With it, it is harder and more expensive.