Fatigue
This symptom needs a post all of its own. When MSers talk about their MS, invariably at some point of their lives they will be held back by fatigue.
According to the International Multiple Sclerosis Federation, the international body bringing together medical professionals, societies and researchers on MS, up to 90% of MSers have fatigue lasting hours, days, even months. In 2012, they released a piece of work conducted with 10,000 MSers across the world.. Considering the range of symptoms and progression in MS, it is perhaps surprising to some that 86% of MSers participating said that fatigue was one of their most troubling symptoms.
There is a theory within the chronic condition community involving something called 'boom and bust.' The Investopedia definition of 'boom and bust' is "a process of economic expansion and contraction that occurs repeatedly." An economic term that describes MS fatigue beautifully. I sometimes have moments, even days, where I leap out of bed and start cleaning the kitchen cupboards or go for a longer walk than I would usually. This period of intense energy means that whilst you're finally feeling on par and able to do those things you've wanted to do for a long time, the sudden or growing fatigue you experience later in the day or in the days following, can leave you unable to lift your head or too tired to speak.
Fatigue almost conjures up an image of a Victorian lady, palm on forehead, swooning onto her chaise longue. Nope, nowhere close. So, how does it feel? It's difficult to describe but I'll give it a go:
1. Imagine waking up, having slept through most of the night, and not feeling like you ever slept at all. I call this a 'slow day.'
2. Imagine being desperately tired, wanting urgently to get home, but first having to trudge through sand waist deep. The effort of putting one limb in front of the other, and the rising panic of potentially not making it (that's never happened to me, but there is always a first time).
3. Imagine knowing exactly what you want to say in a meeting, but what comes out is some unintelligible language that makes you look like the village idiot rather than the experienced professional you know you are.
4. Imagine shopping at the end of the day and slurring your way through the payment, with confused and judgmental looks from those around you as if you are drunk.
5. Imagine being so overwhelmed by a sudden exhaustion that you could crumple in the exact spot you are standing and not blink an eyelid.
6. Imagine telling your family you are going to lie down for a little while and get up 12 hours later.
It is exhaustion times infinity. A loss of control which is both frustrating and frightening. You can understand why most of us want to do anything we can to avoid this from happening.
Neuroscientists don't yet fully understand why fatigue happens but thoughts turn to our old friend demyelination. There are drugs for this, repurposed from use for narcolepsy and Parkinson's (one of which has been reduced in its distribution). Some say it's life-enhancing, some say they experience insomnia. All drugs have some kind of side effect; it's really what you can tolerate medically.
Unlike the EDSS measurement our neurologists use to measure our physical state after our annual review, few include fatigue levels. There is no definitive way to measure fatigue, as it is subjective in the individual's way of describing it. Sadly, this means our care teams may not always take fatigue into account. If you're reading this and thinking you really need support, it's worth putting together a fatigue diary to see when it happens and if particular triggers occur. You can do this on paper, or on your phone, no massive spreadsheet needed. You can use this in your neuro and MS nurse appointments to give a gravity to the situation.
According to the International Multiple Sclerosis Federation, the international body bringing together medical professionals, societies and researchers on MS, up to 90% of MSers have fatigue lasting hours, days, even months. In 2012, they released a piece of work conducted with 10,000 MSers across the world.. Considering the range of symptoms and progression in MS, it is perhaps surprising to some that 86% of MSers participating said that fatigue was one of their most troubling symptoms.
There is a theory within the chronic condition community involving something called 'boom and bust.' The Investopedia definition of 'boom and bust' is "a process of economic expansion and contraction that occurs repeatedly." An economic term that describes MS fatigue beautifully. I sometimes have moments, even days, where I leap out of bed and start cleaning the kitchen cupboards or go for a longer walk than I would usually. This period of intense energy means that whilst you're finally feeling on par and able to do those things you've wanted to do for a long time, the sudden or growing fatigue you experience later in the day or in the days following, can leave you unable to lift your head or too tired to speak.
There are two types of fatigue: primary fatigue is caused directly by the MS (like a dodgy MS bladder) and secondary fatigue is MS's way of reacting to external forces by giving you a dose of fatigue. So for example, medications and heat can cause fatigue (well, they do in my case). It seems as though there are two methods of delivery: there is the kind of fatigue that you can feel coming so you have time to react, and the type that comes to you like a tsunami, leaving you little time to do anything but sit or lie down. Fatigue often encourages other symptoms like cognitive issues and muscle weakness.
1. Imagine waking up, having slept through most of the night, and not feeling like you ever slept at all. I call this a 'slow day.'
2. Imagine being desperately tired, wanting urgently to get home, but first having to trudge through sand waist deep. The effort of putting one limb in front of the other, and the rising panic of potentially not making it (that's never happened to me, but there is always a first time).
3. Imagine knowing exactly what you want to say in a meeting, but what comes out is some unintelligible language that makes you look like the village idiot rather than the experienced professional you know you are.
4. Imagine shopping at the end of the day and slurring your way through the payment, with confused and judgmental looks from those around you as if you are drunk.
5. Imagine being so overwhelmed by a sudden exhaustion that you could crumple in the exact spot you are standing and not blink an eyelid.
6. Imagine telling your family you are going to lie down for a little while and get up 12 hours later.
It is exhaustion times infinity. A loss of control which is both frustrating and frightening. You can understand why most of us want to do anything we can to avoid this from happening.
Neuroscientists don't yet fully understand why fatigue happens but thoughts turn to our old friend demyelination. There are drugs for this, repurposed from use for narcolepsy and Parkinson's (one of which has been reduced in its distribution). Some say it's life-enhancing, some say they experience insomnia. All drugs have some kind of side effect; it's really what you can tolerate medically.
Unlike the EDSS measurement our neurologists use to measure our physical state after our annual review, few include fatigue levels. There is no definitive way to measure fatigue, as it is subjective in the individual's way of describing it. Sadly, this means our care teams may not always take fatigue into account. If you're reading this and thinking you really need support, it's worth putting together a fatigue diary to see when it happens and if particular triggers occur. You can do this on paper, or on your phone, no massive spreadsheet needed. You can use this in your neuro and MS nurse appointments to give a gravity to the situation.
