Cerebral Palsy and energy levels

If you have Cerebral Palsy (CP) then I can already hear your comments and nods of agreement. The well known feeling of something that is more than tiredness. Yet this might be a completely new concept to you. Feeling fatigued is a very common secondary symptom of having Cerebral Palsy, but it is often something that is overlooked.

Why is your energy affected when you have CP?

I can assure you that this is not something I have made up for the fun of it! Nor is it something that is unique to myself. The majority of people with CP will struggle with their energy levels at some point, and this is can be down to a number of factors.

When you have Cerebral Palsy you use 3 to 5 times more energy than an able-bodied person. I believe this is due to how our bodies move and the extra effort it can take for muscles to ‘behave’ and do what we need them to do. To put that into perspective, that’s like cramming three days worth of activity into one 24 hour period. If that doesn’t make you yawn then I’m not sure what will!

The combination of fatigue, pain and muscles weakness, along with other secondary symptoms that appear in adulthood can be known as Post- Impairment Syndrome.

But what is it like?

Sometimes I can pinpoint exactly why I need to sleep for 3 days. Yet this isn’t always as obvious. Am I recovering from something I did yesterday, or is it the event I went to 3 weeks ago and never actually got the chance to recover from?

Short bursts of energy means that I get tired easily, but it also means that I easily recharge. It’s extremely repetitive. It means that I have to be selective in which tasks I complete, and when.

Raisa Hassan

However, this game with yourself is actually pointless, and it doesn’t solve anything. A key sign I have low energy levels, aside from feeling exhausted, is a lack of coordination. The combined feeling of muscles being too tight but also feeling a bit like spaghetti isn’t something that is easy to explain. Saying that, being hit by a bus sums it up pretty nicely!

For me my spasms and shakes get worse, so having a cup of tea with my friend after I sat an exam was a nightmare.

Ryan Sweeney

Fatigue is being physically, mentally, emotionally and cognitively drained. It’s not been able to get your words out or think of what a word is. It’s sitting down and not being able to work out what you need to do next. The brain fog that clouds your concentration, with symptoms of CP all being heightened.

How can I manage my energy levels?

This really is the million dollar question, and I wish I had all of the answers. If I think back to my Occupational Therapy appointments, the word ‘pacing’ came up a lot. It was a word that never seemed fair. Why did I have to take things slowly when the rest of the world bounces back from things 10 times faster than myself?

My energy levels are mostly good throughout the day but by the afternoon and evening they definitely drop. Tiredness can creep up on me which can be frustrating, but I just go with it and pace myself when I need to.

Emma Renshaw

Despite this, learning my own body and its limits has been very helpful. One thing I have learnt over the years is that factoring in time to rest couldn’t be more important. I’ve come to expect the extra aches, tighter muscles and lower energy level the day after doing anything out of the ordinary. But this sometimes can just come out of nowhere, which can really catch you off guard.

Having low energy levels is tough, but what’s tougher is admitting this and having to say no or putting off doing a piece of work until a later date. I find it hard to be able to just rest and not think about what work I need to do. However, leaving it means I can preserve energy, ensuring that my work will be a lot better quality.

Georgia Vine

Everyone will have their own way of resting. As part of this magic thing they call pacing, I attempt to work on a basis of ‘one day on, one day off’. Having a day off usually constitutes of reading or watching TV, which usually turns into writing… because I’d get bored otherwise! But often one day isn’t enough to recover, especially if it was a big event.

Help, I’ve overdone it!

Pacing isn’t a perfect solution, and I don’t think it showcases a true representation of life. We can’t always work on a ‘one day on, one day off’ basis. Sometimes events all come at once and our heart overtakes our head. We don’t want to miss out, even if it means maxing out the energy supplies! Being aware of this flaw within pacing only makes us human and shows that flexibility is needed.

Those crashes aren’t just about feeling tired – there’s the all-consuming nerve pain that just won’t go away no matter what I do, the brain fog that makes forming a sentence feel like wading through treacle, the minutes and hours spent staring into space because my body and mind just *can’t* function. It’s easy to say well, just don’t do too much but the reality of life means that isn’t always possible. As grim as fatigue is, in a way I am grateful to my body for telling me, sometimes, to just stop.

Carrie-Ann Lightley

When I do too much I am hit with what I like to call ‘health payback’, I have done too much and I really am paying for it. Despite the negative consequences, if it meant I could have a good time then I guarantee I’ll do it again. Yet the realisation that this doesn’t occur to everyone else is difficult. It becomes such an integral part of our lives (even if we aren’t aware of it) because our energy isn’t suited to the able-bodied pace of life.

It takes a lot of effort to be this tired!

Heather DeYoe

Of course there’s a limit of how much is physically possible, and I’m not saying I’m capable of everything. Cerebral Palsy does place its limits and unfortunately it can be all controlling and say enough is enough. But sometimes it’s worth those busy days, even if it ends with you feeling fatigued for the foreseeable future.

Life is about making the most of those moments, but it’s also about knowing your own limits and being able to say no.

~ Chloe x