In my many years of living with Multiple Sclerosis, there have been so many things I wish I could convey to the people around me that don’t live with the disease. One key concept that would be incredibly helpful for myself and others with the disease, is that we can go from feeling relatively fine one minute to being overcome by symptoms the next. The idea that symptoms can come on so suddenly, often coupled with the invisibility of said symptoms, can be difficult for our friends, family, and coworkers to accept. It’s a fact of life for many with MS and can lead to canceled plans, strained relationships, and excessive amounts of frustration.
How can the change happen so quickly?One of the big reasons that symptoms can come on so quickly has to do with what we call triggers. I’ve explained triggers in more detail here. The basic concept though, is that there are conditions (like temperature change, noise, and stress) that have an impact on us in a short amount of time. When you have MS, the myelin sheath, which acts as a layer of insulation around our nerves, is damaged. That damage makes it hard for signals from our brain to get where they are supposed to go (either at all or sometimes it just delays them). Different conditions can make that damage suddenly more apparent.
Our brains have problems communicating with the bodyYou may be thinking, “well if that damage is already done, how is some outside condition causing problems so suddenly?” A good example is temperature. Those electrical signals traveling along the nerve are sped up and slowed down depending on the temperature. When the myelin is damaged, meaning there is less of an insulation layer, outside temperatures begin to have a greater effect on the speed at which those signals travel. While temperature is a common example, there are many conditions that can cause these signals to have difficulty going where they need to go. Essentially, our brains begin to have problems communicating with the rest of our body. With our brain controlling everything, that can be extremely problematic and issues can appear quite suddenly.
Frustration stationIf you haven’t experienced it, I’m sure you can imagine how incredibly frustrating it can be to feel OK and then suddenly not. Any plans you’ve made can be derailed at a moment’s notice. Much of the time, you may not even realize what triggered the change, which only adds to our levels of frustration, particularly when there are triggers we can’t expect or control. Temperature is one thing (and a reason why many MS patients rely on devices like cooling vests), but other, less controllable triggers can have a huge impact. I have some issues with sudden noises: sometimes, when I get started by a sudden noise or if something becomes too loud, I begin to experience some pretty severe vertigo. I’ve left many events and family gatherings because the noise level is too high or even too abrupt for me.
We go from feeling okay to awful in a very short timeLeaving events early or canceling at the last minute becomes a hallmark of someone with Multiple Sclerosis. This leads to a massive amount of frustration and resentment with our friends, family, and coworkers. We so often have to say that we aren’t feeling well and we can’t come or can’t stay. On the outside, we often look fine, which adds to the frustration and believability of our claims. It may seem that we are trying to avoid someone or something when that isn’t the case at all. We actually do go from feeling OK to feeling absolutely awful in a very short time span.
What can we do?Perhaps the worst aspect of this is that there isn’t too much we can do about this problem. Yes, we can take precautions for the triggers we are aware of (like planning appropriately if it’s a hot day). There may still always be moments where we need to bail out as gracefully as possible (sometimes if I can lay down in a cold, quiet room for a bit, I can recover; sometimes nothing but time will help). Having friends and family that can understand and be sympathetic can be a massive help though (remember, stress only makes the situation worse, and nothing causes stress like the feeling that we’ve disappointed those we care about). So I hope that this reaches the many friends, families, and significant others of those with MS, as a reminder that yes, we can go from fine to not well in a very, very short amount of time.
Thanks for reading!