I have CP and I'm Frustrated — Scope | Disability forum
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I have CP and I'm Frustrated

Richard_Scope
Richard_Scope Posts: 3,614 Scope online community team
edited October 2021 in Cerebral palsy
Layla, a member of Scope's Network CP has written about what living with CP means to them.

I'm Layla, I'm 25 years old, and I have cerebral palsy (CP). Me and my brain have a wonderful, but often very difficult, relationship. As a writer, I often find myself untangling that relationship by writing about my struggles and successes as a person living with a disability. Recently, I've felt a mix of emotions when thinking about my daily life. I've written them all here in the hope that other people may relate to those feelings, and hopefully seek comfort in knowing they're not alone.

I have CP and I'm frustrated

There seems to be no middle point between too much and not enough exercise. I can't walk for too long, or I'll overstretch myself. I can't lay back and relax all day either, or I'll suffer the consequences of neglecting my tense leg muscles. My disability has robbed me of many opportunities. I've watched my friends do things that I know I'm not physically capable of. I'm often preoccupied with pain management when I should be enjoying activities.

I have CP and I'm tired

It's hard to rest when my muscles are working so hard, even in my sleep. I wake up exhausted - too physically drained to move, but mentally ready to start my day. I am trapped in a battle between what my brain can do, and what my legs can't. On days like these, I cuddle up with my dogs and I give myself time to heal. I read a lot - I exercise my mind. I'm still learning new things every day, and that expansion of my knowledge makes the rough days feel like they have value.

I have CP and I'm angry

This disability, which I share with so many other people, is so often misunderstood. I'm not supposed to look or be a certain way just because I have CP. I've spent a lot of my life calmly ignoring the patronising tones of strangers who assume that I can't understand them. I pretend not to see people search for my blue badge as I get out of my car, using my limp as a reference point as their eyes scan me for visible differences. I don't like being told I'm "an inspiration" just because I chose to get up and address my aches and pains today. A lot of people compliment me on my ability to 'just get on with life' - I'm very sure they have no idea just how difficult that concept is.

I have CP and I'm motivated by it

In spite of the judgements, the pain, and the setbacks, I still believe I need my disability in my life. It is the force that keeps me pushing forward - I work just as hard against my limitations as I do against my muscles, and that makes me better, stronger, and ready to take on another day. I dedicate a good amount of my time to being an advocate for people with CP. I am a part of Scope's cerebral palsy network - a collaborative group for people with CP, their carers, and members of their support network. Meeting once a month, we work with Scope to identify ways to actively improve the lives of people living with CP in the UK. It's also a space to discuss our experiences, and form new connections with one another.

I have CP and I'm okay with it

Living with a disability is hard, but I'm still making the most of my time here on earth. Being disabled means I have a different perspective than that of most abled people. Finding ways to share my lived experience serves as a way for me to find positivity within my disability.

My daily life is filled with a lot of challenges. Any given day can be almost unbearably difficult, both physically and emotionally. However, I have come to love my life for the perfect disaster that it is, and I have some advice for anyone struggling with disability, whether within themselves or through someone close to them: Give yourself a reason to try, and don't always aim for success. I fight as hard as I can each day to stay positive so that I can offer the best version of myself to my pets, who depend on me. Sometimes I lose that strength for a while, and I find it hard to succeed in doing the most basic things; but that's alright, too. As long as I try again another day soon, I know that what I'm doing is enough. I hope whoever's reading this knows that they're doing enough, as well.

If you're like me, and you want to work to give people living with cerebral palsy in the UK a chance to live their best lives; if you'd like to collaborate with like-minded people, talk about your relationship with CP, and meet people who really 'get it', then you should consider joining Scope's CP Network. We meet once a month, and we'd love to see you at a meeting!

To join Scope’s cerebral palsy network, you can email the team at [email protected].

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Thanks for sharing this, and a huge thanks to Layla for writing about how she feels :) 
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  • Cplife
    Cplife Community member Posts: 55 Courageous
    I love this thanks for writing it Layla reminds me how I felt at your age now I’m 51 tired exhausted physically and emotionally a lot has happened in my life. That may have made my systems worse I struggle with a lot of different things my brain can’t do and the pain fide that so hard and like you say so people don’t get it they just tell you to exercise but how can I when I’m in pain and by the time I’ve done the things I do in a day I’m exhausted 
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Thanks for sharing this Layla, some of what you share is very relatable, Thank you.
  • christopherduggan
    christopherduggan Community member Posts: 2 Listener
    thank you for sharing this, I relate so much to what you're saying.
  • SaraC_Scope
    SaraC_Scope Scope Navigate service, CP Network Posts: 42 Courageous
    Thank you for sharing Layla.  This sounds so familiar to my life, especially the Blue Badge situation as so many people scan our car to see why we're using a disabled bay. It was lovely to meet you all at the CP Network yesterday.

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