Just a Typical Cerebral Palsy Day

I feel like a typical day for me would allow many people to have a greater understanding about the daily experiences that someone with Cerebral Palsy goes through – unfortunately this is extremely difficult. There are many factors that can contribute to us having a good or bad day with our CP, and even then there isn’t always a particular reason for it to play up! 

A typical day?

Just like everyone else, I wake up. I probably have woken up because my alarm has gone off, but like any normal teenager – I will press snooze. You see, the day before I might have walked a little further than normal, or even the weather might have been damp and cold. As a result of this I won’t have slept much due to chronic pain in my joints and muscles.

I know I need to use my muscles in order to keep them strong, and I am grateful that my CP still allows me to walk, yet every morning I will wake up with certain muscles cramping for no apparent reason, my painkillers are no longer having any effect and I have seized up from being in one position for too long. First thing in the morning and last thing at night are often the hardest for me – sometimes you’ve just got to bite the bullet and get moving.

Starting the day right

After taking medication I go into the kitchen and make a cup of coffee and breakfast. I am often less coordinated in the morning so I need to be extra careful with the kettle and really focus on what I am doing. I can make a cup of coffee but can’t carry it from one room to another – the way I walk (especially when I am not wearing splints) is far too wobbly to keep the drink from being spilt all over the floor! Thankfully my PA or a friend is there to help when I am at university.

Time to get ready- CP style

For the most part I can dress myself, it may just be buttons on shirts which are tricky and I need help with these due to the fine motor skills which are needed to complete this task. If I am in a lot of pain then I am more likely to choose a looser fitting top, as even something as simple as this can make a difference. Similarly, if my left arm was particularly tight then I may not put my hair up as I will probably get half way through and it will give up on me, another reason why I now have shorter hair as it is a lot easier to manage.

When it comes to doing my make-up, I am no expert in this field! I’m often very clumsy and will drop brushes and create a mess, a make-up brush is probably safer in my mouth than in my left hand. I know this may sound odd (trust me it is!) but when I plait my sister’s hair I will hold the hair in my mouth rather than in my left hand – I get the same result!!!

The commute to university

I will put my splints on and I realise how restrictive they are every single time. I don’t wear my splints around the house and, instead, walk on my toes with my feet and knees pointing inwards. This may be quicker and more comfortable, but it wouldn’t allow me to walk outside safely or to walk the distances that I need to. With splints on and a bright yellow stick in my hand, I am ready to go! Walking to the train station is not a long walk at all, I just need to be aware of uneven surfaces as this could easily make me lose my balance- or even make me trip up over my own two feet.

When I get on the train I hope there is a spare seat, I am able to stand for the short journey but my balance is quite bad so I will need holding upright if the train is busy. Most of the time people do kindly offer me their seat, making the commute a little easier. I feel like if I was on a longer journey and there were no seats available then I would definitely ask people- although it is easier when they offer as it can be awkward at times!

Attending university

I will apologise in advance to the people I am sat with as I often have to change positions to keep myself comfortable and in less pain. I may also have random muscle spasms which causes my arm or legs to move (fingers crossed I don’t hit anyone in the leg or face!). These happen completely randomly and often happen many times a day. If I am stood up and my leg twitches, then I may nearly fall over or it may cause my hand to drop something. When a muscle spasm happens I will feel it build up and the movement is almost like the signal has been ‘fired’. Most of the time they aren’t that painful, just more annoying when you are trying to do things.

However, if I have a lot of uncontrolled movement then it can become painful as it causes muscles to contract and relax at random intervals without my consent. Halfway through a lecture my hands could seize up and I have to take a break from typing. At the end of the lecture it is usually hard to stand up again. I will be stuck in the position that I have been sat in and will need a second to straighten up – this is probably the part where muscles are most likely to misbehave and may prefer to be in a sat down position. Sometimes I think they have a mind of their own!

Cerebral Palsy limits our energy

The further into the day I get, the more tired I become. When I walk I move more than I should and this in itself is tiring! People with CP use three to five times more energy when completing every task that we do, probably because we are fighting with our bodies to get them to do what we want. Walking back from university my legs will have cramped up after being stuck in splints all day, and when I take them off it is the best feeling in the world!

When I get home from university I may be so tired that I need a nap before doing anything else, or I may okay and just need to take it easy as the pain will be pretty high by this point. By the time I get into bed I hope my legs won’t cramp and that I won’t be woken up much throughout the night – then the whole thing starts again!

One day at a time, one step at a time

I realise that I have focused on the negative parts of my day, the struggles that I may face, but that does not mean I have had a bad day. In-between the pain I will have laughed with my friends, enjoyed the course I am studying, watched a film to relax, and gone about my daily business just like everyone else.

I have learnt how to adapt by doing things differently. I have learnt my limits and know that if I push myself beyond this then I will be in more pain the day after – but this is often worth it for the experience. I have learnt how to manage being in pain and being in a lecture. I have learnt that carrying a hot drink would not be a wise decision!

My day is not bad, my day is unpredictable and can be a challenge. However, this is the day I am used to and this is the type of day that I know I can manage. One day at a time, one step at a time, enjoying as many moments as a I can.

~ Chloe x

*JMW Solicitors have now set up a brand new Cerebral Palsy Centre…
– A space to inform and educate
– A resource for news and expert commentary
– A platform to find help and advice*