“My mind is racing, ready for action. But my body won’t listen. My eyes won’t stay open. I can no longer remember what life was like before this. The person that I was seems like a shadow. A person from another life.”
I wrote these words on my blog just three months after my diagnosis five years ago.
The kind of fatigue that comes with MS is totally unimaginable. It’s like a severe flu and hangover rolled into one, with the added fun of your body feeling dragged down by imaginary weights on every limb.
Fatigue was one of my earliest symptoms and after my first clinical relapse in 2015 I went from being an absolute fitness fanatic and workaholic to barely being able to keep my eyes open most of the time. I hadn’t been given an MS diagnosis at that stage, so I set about building myself back up, choosing to believe my sixth nerve palsy was the result of a virus I would recover from. However, six months on I knew the kind of fatigue I was still experiencing wasn’t normal. I hadn’t returned to doing even a fifth of what I’d managed before. That overnight I could go from a crazy hectic life to having to nap daily was just incomprehensible.
My fatigue can take so many forms. From being so severe I am puffed out and ready to collapse just from moving from my bed to the couch, to the more deceptive fatigue that lures me into a false sense of security - I wake up feeling okay and then a few hours in, BAM. It’s like someone pours glue into my eyes and I find myself asleep on my keyboard or under my desk or any other random location I find myself in when fatigue hits.
The invisible element of fatigue is hard and knowing how to respond to the myriad of comments like “Oh I get so tired too”, or “It’s all in the mind, you just have to push through it”.
I can be stubborn sometimes and try to push through it. I want to show my body whose boss but in doing so I lose all control. 95% of the time I might spend a hazy couple of hours fighting my slowly closing eyes only to succumb, the other 5% of the time I miraculously manage to stay upright only to succeed in doubling my fatigue for the remaining days of the week.
There have actually been occasions within my MS journey where my fatigue has behaved but in general it’s a symptom I have spent the last 5 years adapting to. It was easy to welcome sleep when I was able to run, to see it as a reward, but when I lost running I just couldn’t accept that I still needed to nap. I was always someone who needed to be busy so it’s taken me a long time to not feel guilty for taking things easy even when the chores pile up around me. I see now that my body has been running a daily marathon just by living with MS and chronic pain.
For me, accepting I need to rest has been wrapped up in my acceptance of MS. I spent so long in blind denial, pushing my body to the brink, but now I sit and for the first time ever I really listen to what it needs and I wrap it in love and TLC whether it can or can’t do what I ask of it.
Yes, fatigue is so damn frustrating but by doing what I can to manage it, by pacing and staying adaptable I create more consistency in my week and as a result I have less boom and bust days. That’s not to say I don’t still have days where I say to hell with the pacing because there’s something worth throwing out the plan for - those days are so important.
But in general pacing is my golden ticket. By staying adaptable and always looking for ways I can save energy, I’m putting myself back in the driving seat. I’m calling the shots and deciding when and what I save or splurge my energy.
For the first time I am in control of managing my fatigue, not the other way around.
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