Hi! My name is Chloe Tear, I am 20 years old and I'm a university student studying Psychology and Child Development. I have mild cerebral palsy which affects the left side of my body as a result of being born 8 weeks early and weighing 3lb 3oz, as well as epilepsy, chronic pain and impaired vision. During this blog, I will talk about what it’s like being a student who may face a few more hurdles than most. I hope you're able to follow my educational journey because anything can happen!
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To pace or not to pace, the art of getting through life with chronic pain
When you have a disability or chronic illness it can be vital to pace yourself so that you get through the week in one piece. However, I’m currently on the train to London and about to speak at a conference. So, you could say I am falling at the first hurdle!
When I was about 15 years old I started to get involved with more health specialists like occupational therapists and pain management teams. They all loved the word ‘pacing’. Long before this word was introduced to me I had already been pacing myself to some extent. In a nutshell it’s about not over doing it. If you have a busy Tuesday, then be sure to have a relaxing Wednesday to recover from the adventure. For the most part I follow these guidelines and have become pretty good at planning things that are a little spaced out.
But life doesn’t always follow this rule.
What if loads of exciting things come up at once, or I have two day trips in a row? Sometimes I would be sensible and choose which one I wanted to do most, sometimes I’d just go for it and deal with the consequences later. Okay, most of the time I would go for it. The repercussions for doing this are higher pain levels, more fatigue and more muscle spasms- which doesn’t sound nice by anyone’s standards! I think that sometimes it’s worth all of this, even if that is hard to believe. Unfortunately, this does become your new normal, despite this not making it easier to manage.
In my mind, I have two options. I could go through life being really cautious and almost tiptoeing from event to event in the hope I don’t overdo things. I would have to turn down big plans, probably spend most of the time at home and be really focused on not heightening any level of pain that may be there. This option often feels like you are scared of the pain. On the other hand, I could take things as they come, trying to go out and have fun, to be faced by the consequences. It’s safe to say that I have never regretted my decision to go to an event or meet up with friends- because of the experiences I have gained. Despite this, there will be occasions where we really are past our capability have no choice but to recline the request. Please know that on these occasions we really are struggling.
Very often the experience is worth the pain.
That may sound very bizarre if you don’t live with chronic pain, trust me, it’s an odd concept to get your head around. I often joke and say, the more pain, the more fun I had. This is particularly true when referring to the time I went trampolining, but on the whole it’s fairly true. I would rather have the experiences and the memories. To have the laughs and time with friends and family is worth a few days (or weeks) of recovery.
At times it can be infuriating to factor in recovery, especially when you realise that it is not a normal part of being 20 years old. Aren’t the physical restrictions of having a disability enough without adding extra recovery time? Wouldn’t it be so lovely to be able to plan things without the fear of repercussions (minus the hangovers) and not have to worry about your bodies reaction to movement. There may be a moment in the day when the pain hits, almost a reminder of the physical exertion you are participating in.
For example, I am now on the train back from London. The conference went really well, and I thoroughly enjoyed the chance to talk to parents who have a child with hemiplegia. However, my hips, knees and back are really sore. My shoulders ache from carrying a bag around and my feet are very uncomfortable after being stuck in splints since 7:30am, it’s currently 5pm. Muscle spasms are starting to creep up my legs and back, sometimes making my whole body move suddenly. I have taken painkillers and a muscle relaxant, but they haven’t really done a great deal. Yet here I am, sat on a train, just hoping I have enough energy to get home and hoping my legs don’t giveaway while I’m walking. But do I regret the conference? Not for a second. However, I am not looking forward to the functioning state of my body in the morning as that is often when it fully hits. This may not be the most glamorous imagery or what you want to hear, but chronic pain doesn’t come with rainbows.
People often ask me why I would do something if it causes pain. The answer is fairly simple, the desire to live outweighs the desire for less pain. I will continue to try and pace myself as best as I can, but no promises, it may temporarily go out of the window while I have fun!
If you need me, I’ll be in a blanket fort surrounded by hot water bottles while I face the consequences of going to London twice in the space of 7 days. Normal operations will resume shortly.
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Dear Chloe, You're currently 7 years old and are about to embark on a journey of a lifetime. This journey will show you the world in a completely new light, it will show you things you never thought you would see, and allow you to meet people you might otherwise have never met. Unfortunately, this journey is tough, it will test you past the limits you thought you had and cause so much frustration and upset- but you are capable of overcoming this, you can find tremendous joy in every aspect of your life. You have just been diagnosed with mild cerebral palsy. You have never heard of this, and have no idea what it is! But don't worry- mum's done lots of research and has your back! These hospital appointments may seem strange, and unnecessary as you don't think anything is wrong, but it will all become clear with time. Ever wondered why you walk on your toes and fall over more than your friends? Ever wondered why you can't hop, struggle with maths and feel tired? Or hav…
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