Cerebral Palsy
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Getting older with mild cp

Sambt1993Sambt1993 Member Posts: 3 Listener
edited September 28 in Cerebral Palsy
I was born with cp and effects my left hand side. I've noticed increasingly that I'm worn out and exhausted just by school run there and back then trying to do my shift I'm struggling to concentrate. I'm worried I'm being selfish or putting to much to my cp but I'm just so tired. I struggle tho to sleep at night as when I lay down I'm so conscious of the sensation my hand and foot are twitching it drives me crazy. I had a 4 and 7 year old and feel terrible that I'm so tired by bedtime from school run there and back then my shift til 6pm and tea, bath time bed that I'm not making the most of this time. I do recieve the lowest rate of disability as I filled it in myself when younger and was so ashamed (wrong I know but severely bullied etc) of being disabled I made it out as if u was OK. My family say I should speaking to dwp to raise my disability help and gp for help but I feel rude to even ask or what if I lose my lower rate and they think I'm lying as I am lucky people say you cannot tell but I feel there lying. It's so obvious by my hand gestures and foot turning out especially when I'm tired. Can someone offer me advise from someone with cp or knows of it more as I can't do this much longer 
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Replies

  • Denise11Denise11 Member Posts: 94 Pioneering
    Hello Sam1993

    Now please understand this.  You're not selfish and you're not lazy.  I'm afraid that with cp it is something that you have to accept.  You see, you are taking more energy than other people.  My cp is the shaky one but that doesn't mean it's better or worse than your's and when I was in my 20's I started to get tired like you.  My GP said that I took 3 to 5 times more energy just sitting on a chair then an able body person and I'm sorry to say that to you because I don't want you to be upset. However, fatigue comes with cp at times and you have a lot on your plate at the moment.  Also, never ever be ashamed of your cp.  You're an adult now and if people are rude to you leave it go over your head.  Now that you are on this community you can come on here and vent your feelings to us instead.  The bullies will soon get tired if you can manage to ignore them (I know that is very hard, believe me). 

    I agreed with your family that you should ask for more help.  If you don't you may have bigger problems in the future.  You never know about things to help if you don't ask.

    Please let us know how you get on.  Denise11   
  • janer1967janer1967 Community champion Posts: 4,577 Disability Gamechanger
    Hi @Sambt1993 Welcome on board

    If dont know anything about CP but as above I would imagine it would get worse over time

    When does your PIP award end ? if it isnt that far away I would personally wait until the review but if it still has a while to run then maybe report a change in circumstances


  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    edited September 28
    Hi @Sambt1993
    It's fantastic to meet you. You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and you a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels. 
    As has been mentioned us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue. Don't forget as well that being a parent is also exhausting at times, it is for me and many others here on the community. You most certainly aren't lazy!!

    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have most energy etc. I would contact the DWP because they way your impairment affects your day-to-day has changed. Whilst the neurological aspect of CP doesn't change, the physical aspect certainly does. There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it:
    What Post-Impairment Syndrome Means to Me
    What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about your tiredness because it may not be your CP and it's important to be healthy in all aspects of our lives. You can also talk about how you CP has changed.and getting a referral to a neurologist or neuro-physiotherapist. You are able to mention the CP Care Pathway which instructs G.P.s how and when to refer.

    I'm pretty much always around if you would like to talk further. We're are here to support one another. Don't feel alone.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,602 Scope community team
    Hi @Sambt1993, how are you doing? Firstly, welcome to the community! It's great to have you here. :)

    I have mild CP and what you have said really resonated with me. I hope my colleague @Richard_Scope has been able to explain things a little more.

    Like he said, you most certainly are not alone!
    Community Partner
    Scope

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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 682 Pioneering
    Hi @Sambt1993
                                Welcome to the community and thank you for joining us. I can see that our wonderful Specialist Information Officer for CP @Richard_Scope and other members of the community have given you some great advice. I would recommend speaking with your GP as they will ensure that all avenues are explored if need be and may be able to support you, as @Richard_Scope has said it is important to be as healthy as you can be in all aspects of your life. I know it can feel like this but please be assured you are not being lazy and as many others have mentioned the changes you describe have been experienced by others with CP. I also have CP and can relate to what you are saying. Please do ask if you have any other questions and we will try our best to answer. There are many lovely people here on the community and we all support one another. Thank you. 
  • Sambt1993Sambt1993 Member Posts: 3 Listener
    With regards to applying for increases financial help then can I ask if I recieve 92 pounds I think to help living how do I apply to increase this as I'm aware its all changed since i was 16 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Sambt1993
    Do you receive PIP?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Sambt1993Sambt1993 Member Posts: 3 Listener
    I received dwp I think, I get the letters every so often updating me. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    @Sambt1993 it might be easier to have a chat with our Helpline? You can call for free on 0808 800 3333
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,602 Scope community team
    Hi @Sambt1993, how are you doing today? I hope the helpline were able to support you. :)
    Community Partner
    Scope

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