Sometimes There's No Rhyme Or Reason
For as long as I’ve been diagnosed with multiple sclerosis, I’ve had my fair share of tough days. These kinds of days range from feeling a tad “off” to being completely bedridden. When I say that, someone who only casually knows about MS might be tempted to say, “well, you’ve got an incurable disease, of course, you are going to have bad days”.
The thing is, once you’ve had MS for a while, you begin to figure out what will cause bad days. We generally know what can negatively trigger our symptoms. It could be stress, loud noises, or increased temperatures that bring our problem areas to the forefront.
We can also experience new symptoms via a dreaded exacerbation (signaling new disease activity). However, no matter how much experience with MS you get, no matter how well you know your body, there are still days where you can feel awful for no rhyme or reason.
When the patterns begin to add up
If you are new to MS, you might think there never seems to be any reason why you have a bad day. I assure you though, with enough experience, you’ll be able to figure it out.
You may even be able to anticipate it at times. I tend to obsess over weather reports because I know if there is a drastic change in temperature, warm weather, increased humidity, or even high barometric pressure, I know I’ll probably end up laid out on the couch for a day.
Similarly, I look at my schedule and know that if I do, well, anything, I’ll likely have to pay the “MS Tax” the day afterward. We are all different, but after some time, you can definitely start to put two and two together and figure out why your symptoms keep acting up.
Plan for the unplanned
No matter how well you know your body and your disease, life with multiple sclerosis is still incredibly unpredictable. It seems like for everything you understand, several more issues pop at times that leave you befuddled. You can plan your schedule perfectly and still end up feeling utterly awful.
The weather can be ideal and you can still end up spending a day in bed. No matter what precautions you take, there are still days when you will feel absolutely lousy. You wake up with the best intentions but find that you’re fatigued, or suffering from terrible nerve pain, or you can’t really control your legs.
You’ve done everything right but still don’t feel well and you have no reason you can pinpoint.
There is strength in weathering the storm
It’s so incredibly disheartening to expect to have a good day and then have that fall apart. One of my biggest issues with MS is that it makes me feel like I can’t control anything in my life.
It sucks to feel bad the day after doing something, it sucks when the warm weather sidelines me, but at least I feel like I understand that, I can expect it. I feel like being able to point to something and say, “Oh, of course, that’s why” gives me some semblance of control. Even if I can’t really control it, understanding it makes me feel better.
When I have days where I feel terrible seemingly for no reason other than I live with a disease, I begin to feel hopeless. It’s just so disheartening to feel awful and not have something to blame other than the disease. The days I feel awful without any recognizable triggers make me feel hopeless.
When I’m having a bad day with no discernable trigger, I remind myself that it’s not my fault. While hard to accept, understanding that there will be bad days and there’s nothing you can do can be a little comforting. Taking yourself off the hook for not having planned or prepared better can be helpful.
Sometimes you have to say “Hey, I have this disease and that’s why this is happening, it’s not my fault”. You learn over time that you have to accept the bad days. You weather the storm and then start over the next day or the day after that.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
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