Hi, my name is butterkist! — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Hi, my name is butterkist!

butterkist
butterkist Community member Posts: 5 Listener
edited August 2022 in Cerebral palsy
Hello I'm new here, I'm a 36 year old female with cerebral palsy, in truth I'm at a loss with everything going on with my condition, Iam in immense pain my mobility has become so poor, used to be able to potter about at home using furniture etc, now that's not even possible, I got my condition through hospital negligence, a infection came into the unit which also killed my twin brother, I wasn't diagnosed till I was two years old, all I've been told is those premature babies as a explanation, we went through years of hospital appointments with no help and been pulled down at every turn then when I was 16 they seemed to forget about me, I try to keep away for anyone medical because of all we went through, but now I find myself struggling and going through things getting worse, one very different thing for someone with cp is that I'm overweight, and believe me it's not through eating, I've tried everything it doesn't move , I don't know why,i also didn't grow very tall been only 4 ft 8 ish, so that's a problem too, as far as I'm aware never had a social worker either, just wanted to know if anyone is out there in a similar position, thankyou.

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Afternoon @butterkist and welcome to the online community :) 

    Thank you for joining us and speaking so honestly about what you have been through. It sounds like you've had a lot of really difficult challenges to handle over the years, and that what you have been through has had an impact on your current mental health.

    This is a really supportive community to be a part of so I'm hopeful that you'll find it to be a positive outlet. You can find below a few pages that I'd recommend having a browse through to get used to the site:
    • The virtual coffee lounge which is one of our categories, in which we play games and talk about general subjects such as hobbies and interests
    • The recent discussions page, which shows an overview of everything happening across the community
    • The categories page, which shows a full list of discussion groups on the community

    If you have any questions at all then don’t hesitate to ask.


    Have you been in touch with your doctor or medical team about how you feel at the moment and the issues you are experiencing with your CP? I imagine it can sometimes be difficult to seek help when you feel as though you have been let down and abandoned in the past, and you mentioned that you tried to stay away from anybody medical, but speaking with a professional about what you are going through is a good way to start overcoming some of the barriers you are facing.

    Do you live with anybody at the moment who supports you around the house? You mentioned in your post that you don't think you've ever had a social worker, which is fine, but if you do feel as though you would benefit from having some care in place you can refer yourself for a needs assessment through your local authority. You can find out more details here.

    I have moved your thread over to our Cerebral Palsy category and will tag in @Richard_Scope who is a CP information officer at Scope :)  

    Take care
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • Biblioklept
    Biblioklept Community member Posts: 4,199 Disability Gamechanger
    edited August 2022
    Hi @butterkist I don't know a lot about CP but I was reading your post and thinking if you're struggling with weight have you spoken to your GP? It could be something underlying like a thyroid problem <3

    Has anyone looked at why your mobility is getting worse? Sorry if that's an ignorant question, I don't know if it's the expected
  • butterkist
    butterkist Community member Posts: 5 Listener
    Hello thankyou for taking the time to read my post, I honestly at the moment don't have any answers, as you probably read I have been through slot with medical people over the years , and I've tried to keep away since I was 16 I'm now 36, I know I have cp, but as for what to expect with it I was never told , it's just basically been a case of dealing with what came, but now at this point in my life, I've had enough of struggling, 
    I hope your right and the thing with my weight is something solvable, it's got beyond a point, 
    Now I have to wait for the, what I guess from previous experience,the  onslaught of appointments to start, when I've talked to the GP, I don't mind admitting it scares me quite a lot to say the least, sorry if I've rambled, I'm good at that, many thanks again.
  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @butterkist
    It's great to meet you and thank you for joining the community :)

    You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.   

    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.  

     
    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 the most energy etc.  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  


    I completely understand your feelings about medical professionals but 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 how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer.  It would also be a good idea, as @Biblioklept has suggested, to ask for a thyroid function test as well.
     
    I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello @butterkist and welcome to the community from me :) I also have CP and am moving into my early 30s, I'm finding I just can't do what I used to 10 years ago! Particularly since the pandemic, I've found my mobility has noticeably deteriorated, because I was moving around a lot less.

    I think it takes a lot of strength to talk about how scared you are feeling, and often talking about it helps things feel less overwhelming. I hope the community can act as an outlet for this, and support you when you need it.  

    I'm sure @Richard_Scope can fill you in, but it might be worth asking your GP about 'Post Impairment Syndrome', you'd also be welcome to use the community's search function to find discussions on the topic :)   

    Let us know if you need a hand with anything, and keep us updated with how things go!

    Alex
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Morning @butterkist welcome to our great group.
    Bless you, you seem to have coped with every thing yourself darling.
    I would say times have changed with the medical profession and there is a lot more help for you out there.
    With this in mind please get over your feelings about the NHS and take all the appointments you get offered, I do feel there is help out there for you.

    Also the fact that you have joined this brilliant forum - you are reaching out to a community were we all have our own problems but we come together to be there for each other.
  • butterkist
    butterkist Community member Posts: 5 Listener
    Hello again thankyou all for your messege, support and guidance, I will deffinetly look into the things suggested a lot of it sounds identical to what I'm going through,  I can't tell you what it means to know that there are people out there who care enough to read my post and give their time to give help and support,  so many thanks. 
  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    No problem at all @butterkist
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    That's what the Forum is all about @butterkist - It's the best thing I have joined in all my years.
    Have you had chance to look around the site yet, we have lots going on, a few of us go to the virtual coffee lounge, we have general chats and games, you can join in on any when your ready. Would be nice to see you around the site.

    I hope you've had a good day to-day.
  • butterkist
    butterkist Community member Posts: 5 Listener
    Hello again thankyou,  I can see where your coming from, it's a lovely feeling to know your not alone, it's made today a better day than I've had for a long time, I haven't looked around much yet, just finding my feet, as I'm not very technological,  but I will be doing so soon, I thankyou for taking the time to talk to me, it means a lot, many thanks again. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    edited August 2022
    You are welcome @butterkist. It is the very least you deserve. Glad to hear you know you are not alone and are doing better than you have for a long time.

    If we can do anything else to support you please don't hesitate to reach out to us. We are all here for you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • butterkist
    butterkist Community member Posts: 5 Listener
    Thankyou so much your friendliness and support,  gives me some courage,I really appreciate it so many thanks .
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    You are welcome @butterkist. It is the very least you deserve. Glad to hear we give you some courage. We are all here for you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

Brightness

Complete our feedback form and tell us how we can make the community better.