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Living independently with Cerebral Palsy

dizzydingbatdizzydingbat ListenerPosts: 7Member Listener
edited August 2016 in Cerebral Palsy
I recently moved into a one bedroom bungalow having lived with my grandmother for a few years, people ask me how it is and I often say, "It's great", "I've missed it" or something to that effect. What I really want to say is "I'm bloody exhausted!!"...

I'm not naive, I was fully aware that moving somewhere by myself would be hard on my body but this hard? No. I mean, I can't even stand up straight these days where my leg muscles are tired, nevermind the fact that I look like I've been dragged through a bush backwards 1000 times. 

What I don't understand is that in comparison to the two other instances where I've decided to live independently, my physical state seems so much worse. It scares me if I'm honest. More so because I haven't got a clue as to why this would be happening.

Maybe you guys could shed some light on this for me?

Thanks

Replies

  • NoahNoah Pioneering Posts: 430Member Pioneering
    edited February 2015
    Hi Dizzydingbat,

    Its great to hear that you have a bungalow and have decided to live independently.

    Well done you. Remember us folk with Cerebral Palsy use a lot more energy to do everything, they say 3-5 times more than someone without a disability. And moving house is a huge change, which your body probably needs time to adjust to. 

    Are you getting enough sleep?

    Are you eating the right foods?

    Have you had an occupational therapist look at your accommodation and look at ways of making things easier for you? It often the small things that can make a big difference, like having things placed at the right height to try and make it less hard on your body.

    An occupational therapist, may also be able to arrange for some extra help to enable you to continue to live independently  in your own home.

    It might be worth also speaking to your doctor to see if there is any other underlying reason for you being so tired.

    So hope things improve for you - In time with the right help and support I'm sure you will get your life back. 

    Please keep us posted on the community forum, and we will do our best to try and support you where we can.

    All the very best

    Noah
  • dizzydingbatdizzydingbat Listener Posts: 7Member Listener
    Hi Noah,

    Thank you for such a detailed response to my queries.

    You know, I actually thought that the thing about people with Cerebral Palsy working harder than those without, was just something my parents would say to stop me being so frustrated with myself! That's really quite something to know that it's actually fact. 

    I think I'll get in touch with my OT following your advice.

    I'll be sure to let you know how it goes- Becks 
  • NoahNoah Pioneering Posts: 430Member Pioneering
    Your welcome Becks.

    Just an idea, perhaps with a friend start making some notes, of different possible things that if changed would make things less stressful for your body. 

    It might help to have a few things noted down before your appointment with your OT. I sure between you, you will come up with some good ideas. 

    Look forward to hearing how it goes.

    You must share with us some day your skiing and sailing experiences. I so want to have a proper go at sailing and skiing. both on my, must do list! 

    I have put a pair of skis on once, we only had about half an hour of which most of that time was spent trying to get the boots on over my feet! I'm proud to say I have worn skis before. but I only managed backwards and falling over! Oh and I did sail a boat on my own when I was about 10, all be it, in a large paddling pool at the London boat show! I had both legs in plaster at the time! I don't think it ever occurred to me, what would happen if I fell in!!

    Noah
  • nicebootsniceboots Pioneering Posts: 195Member Pioneering

    Hi, I've lived independently when away at uni. I now house share, but live very independently ( I'm really stubborn and like things done a certain way!!!)

    When I first moved away it took a lot of getting used to, but soon worked out ways to make life easier. As Noah said it helps to sit down with someone and make a list as two heads are better than one!

    Some things that help me are:   Online shopping - It's a total godsend!!! I do a 'big keyboard shop' every couple of weeks, then pop to the shops as and when I need to top up with bits and pieces. I find it so much easier than walking round and round a supermarket then carrying heavy bags then unpacking it the other end (knackering!!!!) Most delivery drivers will bring the shopping right into the kitchen for you!!!

    Make a list of household jobs and spread them over the week - I find if I do a little bit of cleaning or whatever every day, then it doesn't build up and take too much effort.

    Have everything laid out in easy reach - I find too much bending and stretching tiring!!

    I cook in batches when I'm having a good day and freeze meals, so that I've always got stuff in the freezer that I can just defrost and heat up rather than reaching for the takeaway menu!!! oh and on the subject of cooking, it's always a handy bargaining tool to get people to come round and help you do things you can't do!!!! I've often used 'can you come round and help me with...... I'll cook you dinner!!!'

    Hope this helps,

    chris


      

  • lozzer25lozzer25 Courageous Posts: 89Member Courageous
    Hello Noah i am 29 i was diagnosed with spastic diplegia when I was 25 the docs knew since I was nine but failed to tell myself or my parents, the one thing that worries me is when I am older my son has Adhd and learning disabilities he is ten he can very aggressive and violent towards me I suffer from muscle weakness in my arms legs I cannot physically restrain my son when he is hitting me as he is stronger does the weakness get worse as you age is there anything I can do to improve it I also frustratingly get tired after just generally tidying up walking etc when started on baclofen after diagnosis but my hands had to started to claw and the mobility was not very good the baclofen gives it back reduces spasms and tremors I would like to know does the medication last long term and will it stay the same or gets worse over time? Found out I have a leg discrepancy left leg longer than left foot turns inwards when I walk nothing they can do it annoys me because if I'd known a long time I could have maybe been stronger than what I am now sorry for ranting
  • Richard_ScopeRichard_Scope Scope community team Posts: 1,659Administrator Scope community team
    Hi Lozzer
    I am sorry to read that you are going through such a challenging time with your son. In terms of improving your physical situation, I can recommend regular swimming. It has improved my condition and has increased my energy levels. Are you getting assistance from Social Services in regards to your son?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • lozzer25lozzer25 Courageous Posts: 89Member Courageous
    I have done swimming before but my legs start hurting in regards to my son he used to have carers in the morning to help to dress him but they changed companys and stopped coming, he's being good again at the mo but its only a matter of time before he starts again
  • Richard_ScopeRichard_Scope Scope community team Posts: 1,659Administrator Scope community team
    Hi Lozzer
    With the swimming or any exercise i have found that it is best to start small and gradually increase the amount. Obviously if that is possible with kids and work etc. Maybe there is somebody on the forums that could assist you with support for your son.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • lozzer25lozzer25 Courageous Posts: 89Member Courageous
    Thank you I feel terrible for keep moaning about it I have it mild and others are completely incapacitated by this condition I hate going on about but because of my son having the strength of a superhuman and my muscle weakness that's what terrifies me he's get bigger and stronger everyday with swimming I can swim a certain amount of time and then my legs just give up remember when I was in primary school being pulled out by one of them big massive hooks at the side of the pool lol
  • Richard_ScopeRichard_Scope Scope community team Posts: 1,659Administrator Scope community team
    I think it is very therapeutic to have a moan every once in a while! Little and often maybe the way forward with exercise if tiredness is an issue.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • BeccaSBeccaS Listener Posts: 2Member Listener
    Hi dizzydingbat.
    You might find googling 'Post Impairment Syndrome' throws some light on your symptoms. I ended up with a misdiagnosis of possible chronic fatigue syndrome and being pretty much bed bound and housebound for about 5 years with fatand pain. Eventually I found a reference to post impairment syndrome on a Scope link to aging with cerebral palsy and on NHS Choices. I have met quite a lot of people who noticed fatigue as they got older with CP there are various Facebook groups where this is often discussed. There are also some good articles online more and more since I first started looking about two years ago.
    With few GPs or children's othopaedic having no or too little understanding of post impairment syndrome being related to cerebral palsy you can spend many years waiting for a doctor who understands your fatigue issues. I had missed diagnoses and many years of GPs and consultants saying they didn't know what was wrong always blaming my fatigue on whichever condition was not their speciality because I had a prolactinoma as well as cerebral palsy.
    I recommend getting your prolactin levels checked just to make sure that isn't causing fatigue, also vitamin D deficiency and B vitamin deficiencycan cause fatigue and most people in Britain of vitamin D deficient.
    The very best of luck, I hope this throws some light for you.
  • BeccaSBeccaS Listener Posts: 2Member Listener
    Ha, that should read 'fatigue and pain'. I was quite skinny then! Lol!
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