People living with MS understand the following statements all too well:
“If you just try harder.”
“You’re just depressed- once you get that under control you’ll feel better.”
“If you lose some weight that would help.”
“If you gain some weight, that might help.”
“Of course you are – I have days like that, too – but I push through and you can, too.”
These are just a few examples of usually well-meaning people encouraging us to cure our own MS fatigue and get back to the activities of daily life. If only it were that simple. About 80% of people with Multiple Sclerosis list fatigue as one of their worst symptoms, yet it seems to be among the least understood. Because we ‘look so good,’ it is difficult for others to comprehend the continuous assault going on inside our central nervous system. Fatigue can’t be measured or touched and it takes a good deal of energy to explain it to those who don’t have MS.
Many people with MS refer those who don’t understand our particular fatigue to the Spoon Theory, written about living with a chronic disease, by Christine Miserandino.
The spoon theory proposes that we begin the day with so many spoons and once we use them up, they are gone for the day- we have to choose what we do each day and pace ourselves so that we have something in reserve at the end of the day.
Recently I saw a reference to a different yet similar explanation of fatigue – if healthy people begin the day with a tank full of gas in their vehicle, people with MS get perhaps only a gallon or two to get where they need to go on any given day. Our tank hits empty long before others’ fuel supply.
My fatigue comes with physical activity – I can be mentally engaged all day long, just don’t require me to get up and move because this is when the exhaustion hits hard and fast. My central nervous system isn’t wired like a healthy person, and the signals are constantly corrupted and move slower. Due to balance issues, my body is always fighting to keep me up right, but in exchange my energy reserve is used much more than a healthy person. My body is in a constant battle almost all the time when I move and that is the main source of my fatigue. It is different for each and every one else as to what brings on their fatigue.
What seems to be the same for all of us, though, is the inability of those close to us to really understand why we have to stop. MS blogger Trevis Gleason calls this the ‘lay down or fall down’ option, and rightly so. If needed, our body will stop us if we aren’t smart enough to do it ourself. As we learn to live with our MS, we also have to learn to be smarter about pushing through when we should be hitting the brakes, but getting those around us to understand can be hard or even feel impossible. It is a tough lesson to learn and it took me a while, but I am no longer cajoled or prodded into pushing when I just don’t have it to give. I hope you have learned to slow down when necessary and not push until your MS becomes the boss and stops you in your tracks.
Wishing you well,