Tiredness and Frustration with CP

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olivia_99
olivia_99 Online Community Member Posts: 5 Listener
edited October 2020 in Cerebral Palsy Network
Hello!

I am 21 and have mild CP. (that mainly impacts my left side) I find that at around 6pm, no matter if I have had an active or relaxed day my fatigue becomes so bad that I can barely keep my eyes open. I try and maintain an evening routine, but trouble sleeping due to pain in my legs can prevent it. I have also found that as the weather is getting colder, my hands tend to 'freeze' up. 

Has anyone got any advice on how to help either of these issues? Many thanks in Advance!  :)

Comments

  • Georgiacdon
    Georgiacdon Online Community Member Posts: 34 Connected
    @olivia_99 Hi, it was so nice to hear that someone else has the same issues. I haven’t found any ways to help so if you find out it will be good to hear. I have found that this has got worse as I have got older.
  • Richard_Scope
    Richard_Scope Posts: 3,780 Cerebral Palsy Network
    Hi @olivia_99
    What you are describing is very familiar to a lot of people living with CP. Because we burn 3 to 5 times more energy than non-CP people this can lead to us burning out quicker.
    Recently (within the last 8 months) CP and fatigue have been looked into seriously. I have created some information on CP and Fatigue with some suggestions on how to manage and minimise the effect.
    Have you heard of the Spoons Theory? 
    The Spoons Theory is for you to allocate your energy (or spoons) to your daily tasks, it's also an easy way to get your friends and family to understand your chronic fatigue and how it affects you. Just work out your spoon level and give it a go, if it's too much, reduce your number and try again until you feel well-paced.
    I completely get what you are saying about the colder weather. It really affects my knees. I can recommend heat pads for your legs at night and hand warmers for your hands. 
    There is almost always a way to manage the issues we have to deal with.      :) 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @olivia_99! I'm 22 and also have mild CP which mainly affects my left side. I can really relate to what you have said. In the last few weeks my hands have become really painful and stiff due to the colder weather. Do your hands get cold? Last year I was given some Turtle Dove fingerless gloves, they have been a game changer! My hands have never been so warm.
  • RacheleLeahSilvera
    RacheleLeahSilvera Scope Member Posts: 77 Contributor
    olivia_99 said:
    Hello!

    I am 21 and have mild CP. (that mainly impacts my left side) I find that at around 6pm, no matter if I have had an active or relaxed day my fatigue becomes so bad that I can barely keep my eyes open. I try and maintain an evening routine, but trouble sleeping due to pain in my legs can prevent it. I have also found that as the weather is getting colder, my hands tend to 'freeze' up. 

    Has anyone got any advice on how to help either of these issues? Many thanks in Advance! 
    @olivia_99 Hello I am 17 and have to deal with the same and the only difference for me is that my right side is impacted most. For me keeping warm helped slightly but didn't resolve my issues fully.
  • matthew2909
    matthew2909 Online Community Member Posts: 22 Contributor
    olivia_99 said:
    Hello!

    I am 21 and have mild CP. (that mainly impacts my left side) I find that at around 6pm, no matter if I have had an active or relaxed day my fatigue becomes so bad that I can barely keep my eyes open. I try and maintain an evening routine, but trouble sleeping due to pain in my legs can prevent it. I have also found that as the weather is getting colder, my hands tend to 'freeze' up. 

    Has anyone got any advice on how to help either of these issues? Many thanks in Advance!  :)
    Hey how are you im matthew 

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