“I’m a workaholic, so I ignore the signs of fatigue and just keep going and going, and then conk out when I get home. It can be pretty stressful. “~ Keke Palmer
Boy – can I ever relate to the quote above. Being a workaholic and a serious A-type personality, I typically push myself very hard. Often much too hard. So fatigue is something that is not surprising. What is sometimes surprising is the very real difference that hits with MS fatigue.
We all hear that fatigue is a big part of living with MS – most MS’ers will cite fatigue as their primary symptom. Often, people who don’t understand MS will respond with “Oh yeah – i get tired too.”
MS fatigue and “regular” fatigue are not the same!
MS fatigue is a sudden and over-whelming whole body fatigue that is not relieved by sleep. You wake up still exhausted. The fatigue worsens as the day progresses. It can bring pain with it.
Regular fatigue is expected fatigue that one feels after certain activities or at the end of the day. It typically goes away with rest.
Being an admitted A-type achiever, I have learned over time to recognize the difference in order learn how to manage my fatigue based on that recognition. When I go swimming, for example, I will come back from a hard workout fatigue – even exhausted. But it is a fatigue that is expected, and not painful. It is a “well-earned” fatigue. Once I rest/sleep, the fatigue goes away.
On the flip side, when my MS fatigue hits, it hits hard, painfully, and rest is non-negotiable – the fatigue knocks me out!
Let’s look at a typical example : my recent (and current) fatigue exacerbation flare-up. The long transition into spring seems to always be a time for deep fatigue for many of us with MS – and for me, this time of year is always difficult. I have been seeing the fatigue warning signs increase over the past weeks, and booked some time off over the Easter holiday time in order to rest and try to beat my MS fatigue to the punch. Well – it beat me to the punch – yet again. On Friday last, the end of my day was painful and difficult for me to get through. But I did get through it, grateful that the weekend was upon me. I had plans for the weekend – fun plans with friends and family. My MS fatigue hit hard late Friday. I went to bed early, and woke up late on Saturday afternoon. I was exhausted, despite having slept 10 hours straight. The spasticity kicked into my muscles, and so, in stiff pain, I stumbled to the living room sofa. Within about one hour, I fell asleep again for the first nap of the day. The rest of the day, I spent in and out of sleep, exhausted and in pain, each time I awoke; repeatedly drifting of unexpectedly mid-focus. Eating was too much effort and appetite was minimal. By 9PM – it was bed time. I stumbled painfully back to bed, and then slept another full 10 hrs, before once again waking up, still exhausted.
The catch-22 for me here is that the inactivity of these MS fatigue episodes increase my pain because of the increased spasticity and simply because I am not moving. So, the pain increases with the decrease in activity. Thus, even when I am in a fatigue exacerbation, I go to swim practice. This particular Sunday was no exception. I attended practice, but my brain and strength were noticeably affected. The fatigue affects my lung capacity (so holding my breath is more of a challenge); my strength and endurance; my cognition (so routine elements get forgotten or mixed up in my head and i get lost underwater). But – the fact of being in the water, with my team mates, energizes me emotionally. It reduces the muscle pain. It balances me.
Fatigue is never fun. MS fatigue comes with a sharper edge than regular fatigue. It hurts. Moving is difficult. Clear thinking is almost impossible! A simple management plan to consider gentle activities like swimming can bring relief. But be safe and choose wisely! When MS fatigue hits… “smarts” are not always fully “engaged”!
“It does not matter how slowly you go as long as you do not stop.”