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Cerebral palsy and fatigue

htlcyhtlcy Posts: 132Member Pioneering
hello everyone :) just wanting to gather your thoughts. I am extremely fatigued at the moment. I only have a mild form of cp but it would appear it is completely sapping me of energy! I can sleep for 14+ hours if necessary and nap in between. I've tried the usual pacing stuff and nothing is working. Just wondering if anyone had any tips or hints or whether this is something I'm just simply going to have to adapt to? 

Many thanks in advance

Replies

  • nicebootsniceboots Posts: 195Member Pioneering
    Hi! I have pretty mild cp, diplegia affecting mainly my legs, although my hands are slightly affected in terms of fine motor control. I suffer a fair bit with fatigue, particularly in the past 3/4 years, I was told it’s just a part of cp, particularly for adults as it’s said we use 3-5 times the amount of energy that non disabled people do. I only work part time which helps with my energy levels, I find I can balance work, physio, going to the gym to maintain my mobility and general life fairly well. Saying that it can only take walking a bit further than I’m used to to throw out the balance. I have to plan things in advance so I don’t burn out, for example if I’ve done overtime at work, then I don’t plan anything major for the weekend, so I can rest. It does affect my social life a bit, but I’m lucky that my close friends understand.
  • htlcyhtlcy Posts: 132Member Pioneering
    Hi @niceboots and thanks for your reply! I think I need to take pacing into account. As I work full time I struggle to do things like go to the gym as well. It's something I'll have to work on but thank you forvyour advice; it is very helpful 
  • nicebootsniceboots Posts: 195Member Pioneering
    No worries @htlcy another thing is do to conserve energy is use a stick when walking outdoors, apparently you use 25% less energy when walking with a stick, according to a friend of mine who is a keen hiker. Although that can back fire on me as I think I can walk further! 
  • StayceStayce Posts: 275Member Pioneering
    Hi @htly
    I too have suffer from fatigue as result of CP and can sleep similar hours that you describe 

    I found a referral to occupational therapy for fatigue management helped to think about planning and balancing activities. I was also introduced through this referral to mindfulness which I have found useful in managing fatigue (there are some mindfulness  free apps to download that you could try)

    Hope this helps
    Best
  • htlcyhtlcy Posts: 132Member Pioneering
    Hi @niceboots and @Stayce thanks so much for your replies! I do have a stick and I have been wondering whether I need to use it. The only thing is I have reduced use of my right hAnd as well so it's like 'What is th lessee or two evils?'! I definitely need to work on pacing. Do either of you keep a record of your daily activities? 
  • nicebootsniceboots Posts: 195Member Pioneering
    Hi @htlcy I don’t keep a record of my daily activities - maybe I should! I like the idea of a scientific approach to managing my cp. I do find my stick helpful, but it does get in the way at times, like in shops for example it’s a bit of a juggling act trying to hold my stick, the stuff I’ve bought and pay! I have left it behind several times... 
    I have been thinking more recently about what I already do and what I can do to conserve energy, as I’m considering retraining and changing careers to become a fitness instructor, which is going to require more energy! I’m going to write a list of what I already do and work through some things I can do to help
  • Richard_ScopeRichard_Scope Posts: 1,705Administrator Scope community team
    Hi @htlcy
    I have had fatigue issues since my late twenties. It can be attributed to the sheer amount of energy we (people with CP) use even on basic tasks. I tend to try and plan to complete my most demanding tasks before lunchtime as my energy levels can drop off in the afternoon. Keeping a record of your activities is a great starting point.
    Scope
    Specialist Information Officer - Cerebral Palsy
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