My cerebral palsy (CP) and epilepsy are permanent conditions, but their effects aren’t fixed. What I have to identify is that both conditions can have very similar physical effects on me. On one day, I can be completely drained physically, which is likely a clue that it’s related to my CP. On another, I can feel a bit under the weather, increasing the risk of seizure activity because my immune system is compromised and potentially resulting in a seizure.
A good day for me is waking up with only the usual aches and morning stiffness in my back, hips, shoulders and leg that quickly result in a series of morning clicks once I get up, essentially my body saying good morning to me. How sharp these are is a lottery and varies from day to day. If I have one of these mornings, I can go for a run or go to the gym feeling relatively fresh. I still push through and do those things if I’m having a worse pain day; I just take it slightly easier and reduce the amount of strain I put myself through. As I have got fitter, I’ve recognised that being increasingly active has loosened my body up considerably. Don’t get me wrong: the tightness is still there, but it’s less prominent.
In contrast, a bad day usually starts when I’ve gone to bed the previous evening, sometimes in tears due to the agony. This means that I haven’t slept well due to the pain. It can increase my fatigue and, because of the lack of sleep, also increase the risk of seizure activity. I wake up with the usual stiffness, but the clicks aren’t immediate and I find it difficult to get myself properly going. This is made worse when the clicks come unexpectedly. The short, sharp pain is excruciating and can occasionally make me unsteady on my feet. Days like these are when I know to avoid mega cleaning or changing my bed sheets.
The combination of pain, fatigue and lack of sleep can affect my concentration and leave me visibly more drained than I would be on one of my better days. When I’m in work, I attempt to set aside the major difficulties I’m having to ensure I’m still delivering what is being asked of me. I’ve mentioned this a few times to colleagues and have always been supported during those periods.
Trouble from my hand or leg on any given day does not mean they will both be affected at the same time. My leg gives me a bit more difficulty than my hand, as I primarily do tasks one-handed. This is usually linked to having been overly strenuous the day before. On the whole, my fatigue is directly associated with back pain caused by my dominant right side overcompensating.
Luckily or unluckily, whichever way you look at it, I have become very good at masking the more difficult days, so it isn’t always glaringly obvious. Although I know I am entitled to them, I’m grateful for the help and support I have had at work and for the reasonable adjustments that have been implemented where possible. They make those days that bit easier to manage and reduce their impact in a working environment. I’ve never felt judged at work and, to me, that is a sign of the amazing people I’ve loved calling colleagues everywhere I’ve worked.
The change from one day to another can also be difficult for other people to understand. Someone might see me running, working or managing something independently one day and understandably assume that I will be able to do exactly the same the next. What they do not see is everything that may have changed in between. Being capable of something once does not guarantee that my pain, energy, balance or seizure risk will allow me to repeat it in exactly the same way.
The unpredictability frustrates me in equal measure. I never really know what type of day I’m going to get until I wake up, unless I’ve fallen asleep in tears, so I have to be reactive rather than proactive. On one of my better days, I can get on with day-to-day activities and carry on as normal—or my normal, as I’d describe it. However, those days can irritate me too because they remind me what I can do when my body has decided to be kind to me. I would give a lot to have more than two days in a row when I can function unrestricted. That’s not me complaining or having a “why me” moment; it’s just something I’d like to happen every once in a while.
I hate being inactive, so the days when my body restricts me annoy me tenfold. If I have a few jobs that I’ve been meaning to do and have put off until the weekend, only to wake up struggling, that is doubly frustrating.
At 28, I have had to learn and accept that I already adapt many everyday tasks before I even factor in the fluctuations in pain. Once those fluctuations are added, they can have a profound bearing on how—or even when—I do things. I am constantly reminding myself that the more difficult days are not failures. They are simply days when I have to adapt a little more, listen to what my body is telling me and do what I do best: crack on.
