Cerebral Palsy
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Is it better to be hygienic or independent?

rpd123rpd123 Member Posts: 8 Listener
Hi there, 

  I just had one quick question for people with cerebral palsy that relate to a question I’ve asked earlier and I hope I’m not being annoying. I am someone who just entered true adulthood and stopped being a rebellious teenager. 

For some backstory, I have moderately severe cerebral palsy, meaning I’m not confined to a wheelchair but I also am not able to walk everywhere, even with a walker.

I know this may sound weird but when I was an adolescent, I was very stubborn and used to believe that I could do everything independently, often leading to unhealthy habits such as leaving my body half dirty and washing only half my hair. I realized within the past two months that I need a lot more help than I thought. I also realized that it’s not that I get tired, it’s that my dexterity is off. I need help with wiping and cleaning my body when I’m in the shower which are things I have not had help with in over two decades (I’m 24). 

Even though I feel much more healthier and happier after I get help, I also feel like I’ve lost some of my dignity. I was wondering if you ever get used to this or if the feeling of being healthy ultimately outweighs everything else? 

I also wanted to ask a philosophical question: Is it better to half-ass everything “independently” or ask for help and feel healthier? Does a healthier body or an independent person lead to a higher quality of life?

Thank you for reading this and I hope everyone stays safe.

p.s. Tell me if I’m being too annoying

Replies

  • Rifi7Rifi7 Member Posts: 198 Pioneering
    Firstly your being annoying. No matter what age you are most people want to stay independent, but saying that we need to get help at times and find a healthy balance. I was born with spina bifida but worked, got my degree, drove and lived a full independent life until a year ago when I started to lose the sensation in legs. I was told last February that I have between 3months to 3years until I will lose the use of my legs, but I’m fighting it 100% and trying to weight bear and walk, if only a little, for as long as I can. I know how your feeling when you say about feeling like your losing your dignity but your not. How you should see it as if you can wash yourself try to but if your struggling and it means you have more energy to do something you enjoy then let someone else help. I know how hard it is as I’m going through what your going through and you go through good and bad days, so now I don’t fight how I’m feeling and just except I will feel rubbish some days, but it will pass and we live to fight another day.
    P.S YOUR NOT BEING ANNOYING.
  • Rifi7Rifi7 Member Posts: 198 Pioneering
    Sorry just realise the first half of reply is typo error. What was meant to be written was Your NOT being annoying. Sorry! 
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,376 Pioneering
    Hi @rpd123
                       How are you? Thank you for sharing this. Firstly, you most definitely are not being annoying, it is good to talk, to ask questions so please do continue to do this. I can relate to how you are feeling. I have Cerebral Palsy and this means that, similarly to yourself, I am not completely confined to a wheelchair but require it often and when I do walk I do so using two crutches. It can be very difficult to get a balance between remaining healthy and clean and doing this independently if this is something you find physically difficult. I too was a stubborn teenager and thought I could do everything on my own but this led to me not always being completely clean and the washing hair example rings a bell. In my experience, as I have matured I have realised that by accepting help with tasks I find difficult, I am able to put more energy into things that I enjoy and that are important to me. It is not easy and I still have days I finds this difficult but in the long run I know it is the right thing to do.  I completely understand your feelings around dignity and this can be difficult, I do think that as any human will probably say, there are good days and there are bad days, but there may be a view of you gaining dignity by having support with these tasks. Once you are fully cleaned, you may feel more comfortable and this can lead to increased self-confidence. In my opinion, in answer to your question, over time accepting help can lead to a feeling of being more healthy, comfortable and therefore develops confidence and positive feelings about ourselves. Asking for help is not easy and can bee difficult to accept but in the long run it helps to support in embracing in the things you enjoy doing. I hope this helps. Thank you.  
  • Richard_ScopeRichard_Scope Posts: 2,889

    Scope community team

    Hi @rpd123
    There is absolutely nothing wrong in asking for or needing help. Hygiene is so important to maintaining overall physical and mental wellbeing. Being fiercely independent can be a double-edged sword as I have discovered throughout my life and some times we have to turn our ego off for the bigger picture. Being as healthy and happy as we can be, using that energy for other areas of our lives.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • rpd123rpd123 Member Posts: 8 Listener
    Hi guys,

      I really appreciate your comments and your personal experiences definitely help to normalize the struggle I am having. I think it may take some time before I get used to the new routine but it definitely helps to know that I’m not the only one that is going through this. I hope that as I mature more, I will see that I’m doing the right thing and that there is nothing wrong with that. Thank you guys again for your responses, I really appreciate it!

    R
  • Rifi7Rifi7 Member Posts: 198 Pioneering
    No problem at all. It helps to share feelings and thoughts and you’ve come to the right place.
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,376 Pioneering
    Hi @rpd123
                        Not a problem, anytime you would like to ask a question or to share experiences then please do. We are a friendly community and we are all here to support each other. Thank you. 
  • Denise11Denise11 Member Posts: 99 Pioneering
    Hi @rpd123  You sound like a nice guy and I think you're very brave to ask that question, I really do.  There are 2 things that I want to say. 

    Firstly, rightly or wrong people judge the disabled on how they look and smell.  If you can be as clean and tidy as you can possible be, you will respected and treated as the young gentleman you are and very quickly people will treated you as rpd123 but not as a disabled man wheelchair!  

    Secondly, a friend has shown me her new toilet which is brilliant!  Expensive, but the more people buy one like her's, the price might drop or other manufactures will copy it.  you can higher or lower it to suit you, then you do whatever you must and then press a button.  The waste gets covered up and you will have jets of warm water washing you after which warm air will float around you.  I think the price was around £2000 to £3000 mark so you could save up or ask the council for a grant!  She did and it is her own home!



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