The change I want to see: understand our fatigue

Lucy_Scope

I know I am (slightly) late to the party with this one. But, happy belated World Cerebral Palsy Day for yesterday.

This year's theme is the change I want to see. So here's mine:
A simple ask for World CP Day: When we say we are tired, as a non-disabled person, please do not respond with "I am tired too". It might seem helpful, but it downplays our experience.

Fatigue. The biggest barrier I experience living with cerebral palsy. People with cerebral palsy use up to 3 to 5 times more energy than someone without cerebral palsy. Most people see me getting on with life: going to work, walking, going to the gym, socialising. They don't see the toll it takes or the trade-offs I consistently make.

Recently I got asked why I did not go on an outing with my partner and his sister. The reason: I chose managing my muscle tone at the gym. I did a legs class (something which I now regret with very sore legs)! I knew I could not do both; the pain and fatigue from the gym class meant that I needed to prioritise stretching, using my TENs machine, and foam roller. Activities like gym take planning: what days am I working from home? Have I got anything planned that day? What have I got coming up that means I could be doing too much? Questions like these I ask myself regularly.

Add in having a uterus, and well, that is another fatigue challenge. Menstruating is difficult for any person. But for me, it means taking extra precautions. I know that my body will probably be flat-out exhausted before the day has even begun.

I have come to the realisation that a simple trip is not all that simple anymore. I am now realising that I cannot do everything. Cramming as much into my day does not work. At some point, my body will force me to slow down.

It is difficult to accept my body's limits. Especially as I know it will get even more challenging as I age with cerebral palsy.

I am leaning into my low-energy activities of reading and watching TV, which give me a lot of joy. When I reflect, I realise I probably appreciate activities taken for granted that non-disabled people do not think about. Going on the train to work, seeing the Yorkshire Moors out of my window, simply moving my body. I have come to appreciate the small pockets of joy. Because when my body is not permitted to go at 100 miles an hour, I have come to appreciate the smallest of things.

People with cerebral palsy are tired all the time (yes, makeup and caffeine may be good coverups)! If you know someone with cerebral palsy, please be patient and understanding. Be open to plans changing to help a person manage their fatigue.

So, a final plea for World Cerebral Palsy Day: Know that people with cerebral palsy are tired. Ask if there is something you can do to help. Even just a cuppa can help.

Richard_Scope

So well written @Lucy_Scope. I think many can relate to your experience.