Fatigue, though probably the most prevalent symptom of multiple sclerosis, is still a bit of a mystery to researchers and scientists. I know I have blind spots because I have lesions in my optic nerves, but there is no lesion in the MRI that the neurologist can point out and say, “This lesion here is the reason why you’re so always so tired.”
I’ve seen fatigue described in many ways and I’ve read different explanations for it. One of them has to do with inflammation. We know inflammatory processes in the body cause fatigue because they mobilize your defenses in order to stop them. Another explanation has to do with the lesions themselves. Every time there’s a message to carry and the road is blocked, your nerve cells find a way to go around it, taking a detour. That obviously uses up more energy and resources.
Now a recent study suggests that fatigue in multiple sclerosis may be connected to a specific region in the brain. Much like a stable person can suddenly develop mood disorders if they have lesions in brain regions that regulate mood, these findings hint that “Damage to strategic brain white matter and grey matter regions, in terms of microstructural abnormalities and atrophy, contributes to pathogenesis of fatigue in MS, whereas global lesional, white matter, and grey matter damage does not seem to have a role.”
If this turns out to be right, maybe, just maybe, we can hope that more studies will follow and we get more effective treatments? Pretty please?
About a month ago I wrote about learning to express my feelings, and then start working on expressing my needs. It makes a lot of sense, but I also pointed out to my therapist that before expressing my needs I needed to learn how to recognize them. Truth be told, I never paid myself much attention. I only tend to my needs when my body becomes unbearably uncomfortable. My therapist illustrated this to me with my relationship with food. Sometimes I only remember to eat when my stomach is hurting and low blood sugar is starting to make me freak out. She says I must remember to take care of myself before it ever gets to that point. I must listen to the signs my body sends me before I become sick. She acknowledged that I’m only acting out what I unconsciously learned during my early years, and that is that people will only tend to my needs after I get sick. But she also reminded me that I’m not a baby anymore, that I can tend to my own needs and I’m responsible for my well-being.
But old habits die hard. Having low self-esteem doesn’t help. Based on what I know happened during my childhood I probably “learned” that being invisible would be better for everyone. I had a dance teacher once telling me, “Sónia, you must stop apologizing for being.” Most of the time I go on pretending I don’t exist to myself. I don’t like looking in the mirror. I don’t take enough breaks at work, which is terrible for my neck, my back and for my brain fog. i just ignore myself. Life makes sense to me if I pay attention to other people’s needs first and let myself fall behind.
I don’t know if the fact that I feel like I’m a weird puzzle is a cause or a consequence of this. I’m almost 32 and I can say I never figured myself out. I’m spending these last days of my summer vacations with a friend and the other day I told her, “I don’t really know who I am.” I can be a lot of different people, put on such different masks depending on the context that sometimes I even surprise myself, like I’m an actress or like I’m watching myself from the outside. I have great strengths and great weaknesses and they all mean something different depending on what I’m going through at the moment. It’s… puzzling.
Usually when I’m in a good mood I say just for fun that having been born in October I’m the most unbalanced Libra you’ll ever meet. As a child I could be very quiet playing by myself for hours, and I could also be very hyperactive, yelling and running around and making everyone around me really tired. This latter state I think was – and still is – fueled by a lot of anxiety, hyperarousal and hypervigilance as well.
Growing up, I kept feeling for most of the time completely restless. Part of that restlessness was what it’s now called in social media FOMO (Fear of Missing Out), as I had the feeling the world was turning and I wasn’t keeping up with it. The other part of it was the need to plan everything ever so carefully for fear of losing control. Even in my early 20’s when fatigue settled in, I kept on pushing myself, and pushing myself a little further, ‘cause if anything ran out of my control I would become terribly anxious and nervous – and if everyone else was living while I was merely surviving I would fall into depression and I didn’t want that.
Being diagnosed with multiple sclerosis at 29 became a double-edged sword. On the one hand, for the first time in my life, people convinced me – and I realized – that it was ok to rest. I finally started on a journey meant to teach me how to monitor myself. I’m still far from reaching the destination, but I definitely started listening to myself more, paying attention to my limits and to what my body was telling me in each different situation. I found out it was not only ok to rest, it was also ok to take breaks, to hit the brakes, to say no, to do nothing, to not be productive, to not prove myself to anyone, to just be. And I found myself enjoying it, my self-indulgence-I-have-the-right-to-be-healthy time.
On the other hand, I became even more restless, more hungry for new experiences. Whenever a challenge presents itself to me, even if a little dangerous, I think to myself, “I don’t know for how long I’m going to be able to do this, so here I go.” Or, “I don’t know for how long my legs are going to keep on working so let’s just do it, right?”
On Monday, my friend and I decided to go see the caves that are nearby the place where we’re staying. Our guide was a former Boy Scout who grew up in the region. He was fairly at ease, going into the woods, climbing up the rocks and hills, going down the caves, showing us around, “This is where a Neaderthal’s tooth was found,” and all that. My friend also seemed pretty comfortable. Me? Let me just say that I don’t trust my balance that much. Even though for the last 10 years I was taught yoga, Pilates, several contemporary dance techniques and kept being told my balance was great, I’m really insecure about it. I was dreading I would fall down at any time and make a fool out of me. But I kept following them, panting as if I was an inveterate smoker. I must say at this point that not even my friend knows about my MS, and I didn’t think it was appropriate to stop them on their tracks and yell, “Wait, I have multiple sclerosis, please bear with me ‘cause I have balance issues and I also get really tired!” When we reached the entrance of one of the caves and I saw our guide take a rope out of his backpack because it was “easier to go down there holding on to a rope” my knees started shaking. No, they weren’t shaking because I have MS, they were shaking because I don’t trust myself. I’m glad I decided to go because the inside of the cave was pretty wondrous, but when I left I was kind of angry because I didn’t take any pictures. Well, I needed both hands free to hold on to the rope, which meant leaving everything I had with me outside, but does that count to my perfectionist self? No.
So on Tuesday, I left my friend reading and napping on the garden, I took the keys, my cell phone and my camera, and went back to the caves. I enjoy doing things by myself because people either speed me up and I get really tired, or slow me down and I get impatient. Going by myself means I get to keep my pace. Now, I’m not completely crazy and I didn’t go back to the most dangerous ones, especially because I had no equipment whatsoever with me. But I wandered. And I wondered if I’m ever going to find that middle ground between wearing myself out completely and letting life pass me by. And wondered what I keep trying to prove myself. But whatever it is, I will be taking pictures of it.
Fatigue is the most common symptom in multiple sclerosis, with around 80% of patients reporting it. Out of all these patients, a large percentage of them also report fatigue as being the most disabling symptom. I definitely include myself among them. While I have other symptoms as well, they are not so prevailing or intense as fatigue. My fatigue is chronic. Even when I have a good night sleep, I may wake up feeling tired already. Sometimes I prefer not to shower on a particular day if that means I can spend a few more minutes sleeping. Totally gross, I know, but it’s that bad. Fatigue has also had a huge impact on my social life and on my relationships.
As I’m not one to keep my arms crossed, I searched for books about fatigue in multiple sclerosis. I found a lot of practical and useful advice, mostly regarding work, exercise, the way you keep your house, not asking for help or not knowing your limits, etc. However, I also started thinking about emotions and states of mind, and I found out that many of those can cause fatigue.
So what kind of emotions and states of minds can run you down?
Doctor Gabor Mate also gives a little insight about this subject in his book When The Body Says No. I’ll leave you with an except of a dialogue he had with the mother of one of his patients that absolutely had me stop in my tracks:
“She would always tell me when she was tired of me and she needed to rest because she found me tiring.”
“This is in the last months?”
“Why do you think that is? You can’t be tiring. There’s no such thing as a tiring person.”
“My personality would tire her after a while – it was too intense.”
“When does one get tired?”
“When you’ve been working. So you think it was work for her to be with me.”
“She had to work too hard around you.”