How badly does fatigue affect your life?

KylieGirl
KylieGirl Online Community Member Posts: 17 Contributor
in Mental health and wellbeing

hi there,

I have spastic diplegia. I used to be able to walk up until the age of 33 when I decided that I was just in too much pain. And made the decision to become a wheelchair full-time.

I am on a cocktail of meds, including gabapentin at the highest dose as well as a baclofen pump.

I live a fairly active life and I’m very determined. However, my fatigue has got so bad over the last couple of years, that it is stopping me from doing activities that I really love.

For example, I can wake up in the morning and have a feeling in my head that tells me it’s going to be a bad day. I’ve tried my best to rest as much as possible particularly leading up to important events. That doesn’t seem to matter, I can stay in bed for an entire day and just binge watch a series, have an active day the following day and then have a ‘crash’ day the day after.

I’m just wondering if this is something that is familiar to anyone else. When these days happen, I can do nothing but sleep. It doesn’t matter how much someone is talking to me, I can fall asleep right in front of them. I can sleep for hours at a time and still get a good nights sleep that night. Before I found out tonight that fatigue is a big part of CP, I was considering looking for a diagnosis of chronic fatigue syndrome, because it is so bad.

I’ve been on the so many years, I don’t think it’s that.

thank you all so much for reading.

Zoë

Comments

  • KylieGirl
    KylieGirl Online Community Member Posts: 17 Contributor
    https://forum.scope.org.uk/discussion/comment/919884#Comment_919884

    thank you so much. I am so incredibly grateful to you. I’m sorry that this is also affecting your life, and it appears to be much more often than it happens to me, so sending you best wishes and admiration for coping with it with such grace.

    Best wishes

    Zoë

  • smokey18
    smokey18 Scope Member Posts: 52 Contributor

    Kylie Girl

    I just wanted to express that I can relate to how you experience your pain and fatigue. I had a stroke 6 years ago and as a result I still today continue to experience fatigue along with chronic pain.

  • luvpink
    luvpink Online Community Member Posts: 3,212 Championing

    Yes my fatigue has worsened so much since January time.

    Blood tests showed vit d and vit b12 deficiencies and supplements have proved to be infective.

    I am permanently exhausted and I can barely raise from my sofa let alone function.

    I literally have to fight to stay awake during the day because my sleep at night

    Is already poor and it would make it worse if I do sleep during the day.

    Its a miserable exsistence and I miss out so much socially because I don't have enough energy.

    I am due to have more blood tests this Friday. X

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