My previous blog explored the physical steps you can take to manage fatigue, but there are also important emotional and environmental consequences of fatigue. For me, this means accepting that there are some things I cannot do on a given day, which may make me disappointed. Harder still is accepting that there are some things I may never be able to do – this can turn into a long session of reexamining my future plans and dreams.
On a more immediate level, I often just get sad and angry that I don’t feel well. I even occasionally dip down into an ugly resentment that other people feel so much better and take their health for granted. I typically allow myself to wallow in these feelings for a while, until I end up getting so tired of myself that I talk to a friend, go for a walk or do something else to get me out of this dark place. Other people may find it helpful to talk to a therapist or engage in some other activity that helps them feel better.
Pretty much everyone with multiple sclerosis has felt MS-related fatigue. You know what I am talking about – not the tiredness that people complain about after a late night or a day of holiday shopping, but bone-crushing weariness that makes you doubt whether you can continue to function for even an hour more, much less until the end of the day. For me, fatigue is often accompanied by nausea and a headache, not to mention a worsening of sensory symptoms, such as tingling feet and the MS hug. With all of that going on, cognitive function goes out the window, adding to the frustration of the whole terrible situation.
I attended a session on self-management of fatigue a few weeks ago at ECTRIMS 2013, presented by Dr. Marcia Finlayson, an expert in occupational therapy. She said that she has heard people describe fatigue as a “constant heaviness, like walking in cement” and as “debilitating,” “scary” and “discouraging.”
Imagine that you are in the middle of giving an important presentation at work and burst out laughing uncontrollably. What if you started sobbing while in a conference with your child’s teacher? Or doing either of these things in the middle of a grocery store, a movie theater or a fancy dinner party?
Pseudobulbar affect is a symptom of multiple sclerosis that is relatively uncommon, occurring in up to 10% of people with MS at some point in their lives. Also known as involuntary emotional expression disorder (IEED) or the less dignified, but nicely descriptive “emotional incontinence,” the simplest definition sums it up as “laughing without happiness and crying without sadness.” ...
Before I was diagnosed with MS, I developed a fear of driving. I would get very nervous even before I got behind the wheel. As I inched along in my car at speeds well below the speed limit, it would take all my resolve not to slam on the brakes if a car 200 feet ahead of me changed lanes. My biggest horror was a traffic circle I would have to get through on the route from my home to almost anywhere. By the time I reached my destination, I would be shaking and drenched with sweat. When I spoke to my doctor about it, he told me to practice more, which was the last thing that I wanted to do.
Shortly after that, strange sensations in my legs led to my diagnosis of MS. My neurologist agreed that my anxiety about driving was most likely related to cognitive effects of MS and told me not to drive if it made me uncomfortable. Except for rare trips to a nearby grocery store, I did not drive again for almost 8 years.
Have you ever tried your hand – or your feet – at the video dance game Dance Dance Revolution, or DDR? I played a few times when my kids went through their DDR phase a few years ago. It was lots of fun, and a great challenge, trying to keep up with the game’s fast-paced, ever-changing dance moves. It required every ounce of concentration I could muster. And, let me tell you, it wasn’t a pretty sight!
I haven’t tried (or even thought about) DDR in years. But my curiosity was piqued when I read this article about how DDR is helping some people with multiple sclerosis work on their balance, coordination, physical fitness and cognition. Researchers at The Ohio State University have mounted a study in which people with relapsing-remitting MS practice DDR a few times a week. One woman quoted in the news report said she’d seen improvement in her symptoms and her overall quality of life since taking part in the study.
I write for a living, so I really value the full use of my fingers for typing and for scribbling notes during interviews.
When I was diagnosed with multiple sclerosis more than a dozen years ago, one of the things I worried about most was that I might develop spasticity in my hands, making it hard or even impossible for me to type and write.
That, thank goodness, hasn’t happened, at least not yet.
I want to pick up where Trevis left off – talking about how he and his wife confronted fears about the future and advanced MS by getting to know more about the “enemy". Fear of the disease can be disabling, sometimes more than the disease itself. Fear can literally stop people in their tracks.
So the best strategy is often to think about what frightens you the most (which will be different for every individual) – whether it’s reduced mobility, loss of employment, threats to your independence, a shortened life expectancy, or anything else – and work proactively to help yourself feel less vulnerable, safer, healthier, and more in control. The next step is to get educated about the issue or issues that scare you and take steps to build your safety net. And if you’re not sure how to go about that, an MS Navigator can guide you.
When my husband, Khoren — who has secondary-progressive MS — complained of excruciating pain down both arms and something that felt like a toothache, he took some ibuprofen. Just when we started to become familiar with his usual MS-related aches and pains, a new symptom seemed to be coming on to the scene. Great.
I didn’t want to make a big deal of it, but I’d never seen that look of distress on his face before. When he sat up in bed, it gave him some relief, but that strategy soon stopped working. He took a muscle relaxer and another drug for nerve pain that he typically skipped. He decided to head out to the living room so one of us could sleep. I told him I’d turn our noise machine off in the bedroom so I could hear if something went wrong. As it turns out, that was the smartest fluke of a decision I’d ever made in my life.
I have been interested in the effects and side effects of smoked cannabis for many years. Having been involved in multiple sclerosis research and patient care, I’ve had a significant minority of my patients report smoking cannabis on a regular basis – indicating that it helps with pain, spasticity or both.
In a disease without a cure, such as MS, good symptom management is important and if indeed smoked cannabis is proving helpful, then these potential benefits need to be weighed against the possible side effects of further cognitive dysfunction.
The Unspeakable Bits; From a Life with MS
4/20 was long counterculture code for the use of marijuana. So on April 20, I put out a broad question about the medical use of marijuana (MMJ) for multiple sclerosis to the Life with MS Facebook page. I was surprised by the overwhelming response and support for the legal use of the substance.
Laughter and tears typically represent opposite ends of the emotional spectrum. But for some people – including about 10 percent of those with multiple sclerosis – episodes of involuntary laughter and/or crying are symptoms of a single emotional disorder known as pseudobulbar affect (PBA).
PBA is one of many mental disorders that can plague people with MS; it’s associated with other neurologic conditions such as stroke and dementia, too. It’s a tricky disorder to pin down. After all, everyone laughs and cries, right? But people with PBA find themselves laughing at things they don’t find funny and crying when they’re not at all sad. Such episodes can be very brief or last for a few minutes; they can occur only occasionally or many times per day. It’s believed that PBA results from damage to areas in the brain related to emotion.