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Guest post: Loneliness, Cerebral Palsy & Me

Francesca1994Francesca1994 Posts: 11Member Whisperer
edited January 2017 in Guest blogs
This guest post is by Francesca Dean, author of the blog, CP and Me.

The festive period which can be full of sparkle and laughter. Not all are so lucky though. Tonight I want to talk to you all about my experiences of loneliness and how I've bounced back and am still smiling.

Growing up I was a very happy child who didn't really care if she had Cerebral Palsy, however I cried and screamed a lot too but I think this was all down to developmental delay.

When I was a few months old I started to miss milestones. For example holding my head up and only saying words rather than full sentences. After all these tests an initial diagnosis of Cerebral Palsy was made. I started talking properly at the age of 5 and I haven't shut up since. Haha!!

After going to a special nursery and school to receive additional help, I was allowed to attend a mainstream primary and high school. This was absolutely amazing for me as I was able to mix with so many people and not have a label over just because of my condition.

Girl sitting alone on park bench in twilight

Loneliness was never a massive issue for me as I come from a pretty big and very supportive family, but once you enter adult services everything comes to a complete stop.

These so-called 'professionals' think they can layout your whole life but actually, it's YOUR life and YOUR decisions. If you're experiencing this with your child and they can or cannot communicate, the best advice I can give is to stand up - be succinct but the key is precision. If people walk all over you then you ain't gonna get anywhere.

But, behind the façade loneliness is affecting me now more than ever before. Through no fault of my own I had to leave full-time education in June due to struggling with workload and as an added consequence no more funding became available so most days are spent in my room on my computer blogging and raising awareness of Cerebral Palsy whilst waiting for hourly visits from carers to carry out personal care visits, making sure I have plenty to eat and making sure I'm comfortable.

I  have a day out on a Tuesday with a carer undertaking personal activities of my choice such as seeing family, banking and going out for meals. I also go to a project called Blackburn Youth Zone which is designed for young children and adults with a huge spectrum of physical and additional needs from 10am-1pm every Sunday. I can honestly say attending this project has changed my life in so many ways more than you'd ever imagine, but this is not a life that an average 22 year old should be living.

I'm determined to live my life to full capacity in 2017 and now I urge all of you to do the same. I hope you all have a very Merry Christmas and a wonderful, happy, healthy and prosperous New Year.

Francesca X  

What are your experiences of loneliness and disability? Do you have any coping strategies or tips that you could share with the community? Leave your comments in the box below.

(Image: PetteriO, Creative commons license)

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Replies

  • maggie54maggie54 Posts: 10Member Whisperer
    Happy Christmas and new year Francesca x
  • Francesca1994Francesca1994 Posts: 11Member Whisperer
    Thankyou very much! X
  • Sam_ScopeSam_Scope Posts: 5,690Administrator Scope community team
    edited January 2017
    Great post @Francesca1994

    I think that sometimes you can feel lonely even when you are surrounded by people.  I found myself feeling really isolated when my illness worsened but realised it was because I felt I couldn't talk about it because I felt embarrassed.

    Once I saw this, I decided to speak out and I got such a great response and realised that there were so many people with 'invisible' disabilities who are out there and are feeling the same as me.

    Forcing myself to connect with others through an online setting meant that I built confidence to talk about disability to people in real world.

    Merry Christmas and a happy new year to you too!
  • Francesca1994Francesca1994 Posts: 11Member Whisperer
    Wow!! This has really moved me. Thankyou so much!
  • Katie FraserKatie Fraser Posts: 5Member Listener
    I am an individual that can be lonely sometimes and the way I cope is to remind myself the good things I have in life whether it be friends, or family. I work as a customer feedback champion in a scheme that helps learning disabled adults to learn to live independently so that takes up my time so I dont get bored and theres things around where I live and I find sometimes to do things on your own is ok even if its tough but I try and see who can go with me. I'm a 40 year old, even though I dont look it. 
  • Francesca1994Francesca1994 Posts: 11Member Whisperer
    Hi Katie!! Thankyou so much for your lovely comment! I think it's amazing how you work but you have this amazing can-do attitude. I hope you have a fab Christmas and a very Happy New Year!!
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