Managing my Multiple Sclerosis and its many varied symptoms is a constant battle and has been a long struggle for me. Through a lot of trial and error, I have learned a lot about what works for me and what doesn’t. Tysabri has done wonders keeping the progression of my disease stable (for the moment anyway), however, I still suffer from many symptoms (when that myelin around the nerves is gone, there’s nothing bringing it back, not yet anyway). I’ve also talked about how medical marijuana has been a huge help to many of my symptoms. Today, I am going to talk about something else that is pretty important to the management of my symptoms: my need for routine and familiar things.
Starting the day
Starting the day off the same way is pretty important for me, whether it’s a weekday or weekend. I need to do the same things things I do each morning and not rush into anything. My wife has learned this the hard way: she’ll want to get started on something on a weekend morning before I’m ready and it can make my body come crashing down. It’s not only me doing something, it’s the space around me becoming too busy too fast or unexpectedly. If I’m doing my thing, but she is up and cleaning or doing something that isn’t common, it can have a negative effect on my body. My legs will be weaker, my speech slurred, and I’ll end up with extra fatigue. It can be a disaster if we have plans that day and is a common reason I end up cancelling on people. If things go routinely for me in the morning, I have a much better chance of having a good day. So much so, that if my wife is home and hasn’t interrupted that routine, she’ll say that she’s “set me up for success” that day! That all sounds weird, right? An interrupted morning routine can lead to worsening physical symptoms for me. I don’t fully understand it either, but after 17+ years, I can tell you it’s something I’ve definitely learned the hard way.
I’m not spontaneous
Of course, it’s not simply about morning routine, it’s about what I am expecting to happen at any given moment. I was once a more spontaneous person. Over time though, as the disease has wreaked havoc on my body, I’ve become the exact opposite. Planning everything has become very important for me. I’m sure many of you are familiar with the Spoon Theory (if not, and you have MS or know someone with chronic illness, please go read it). Well, I have a finite number of spoons each day, which means I plan out in my head how I’m going to use them. Again, this has become more important the longer I’ve had the disease. It’s not always easy to plan things out like that (especially with cognitive issues), so when I have an expectation of how things are going to go and that changes, it throws me out of whack (both mentally and physically). The simplest of changes, like my wife being at work later than I expected or even the weather not being what I thought it would be, can be enough to derail me.
I’m a planner
While a change in what I was expecting can feel disastrous, when things go the way I expect, the way I was planning, then I can often thrive. As carefree as I may look at times, know that in my head, I’ve done some planning to make my life easier, to make me appear better than I really am. There can be a lot of effort leading up to even the simplest of activities. If I’m planning to go out, I’ve thought about everything from where the bathrooms are, to literally how many steps I think I’ll have to take, and if I’ll be able to sit or stand when needed (most friends think I need a seat all the time but sometimes I do have to stand, or try to, because my legs simply have to be straight or I’ll be in bad pain). I’ve also factored in rest time before and after, based on whatever I’m doing. When everything is going as I expected and planned for, you may look and be shocked that I even have MS. That may sound awful to some, but for me it’s a good thing. Learning and knowing what my body can and can’t do and what it needs have allowed me to put myself in the right situation to look nearly normal and most importantly, to be able to do what I want.
While having a plan and expectations for what I am doing are helpful, being in a familiar place can be even more beneficial. Obviously, there are certain logistical aspects of being in a familiar place that make it easier for my MS (knowing where bathrooms are, if I can sit/stand, etc). There are other benefits too. I’ve mentioned in my articles about sensory overload and crowds how a familiar place can be a game changer. For whatever reason, if I’m in my own home, or at a bar or restaurant that I frequent, then I have an easier time with everything. It’s easier for me to block out some of those sensations that can be overwhelming, like noise and people. I assume that this is because there is less new overall stimulation to take in. Because of that, It’s also easier for me to adapt to any unexpected changes. The plans may have changed, but now we are going to the same bar we always play trivia at? Well, that’s much easier to handle than if we were going some place that is new or changes a lot. A combination of knowing the layout and the familiarity of the place makes life much easier for me.
Trust your gut
So while this all may seem like a bad thing to some, that I need to keep a routine and stick to familiar places when possible (as someone who once loved being spontaneous, I get it), I try to look at it from a more positive light. It’s a way to help manage my issues. Living with MS is all about being able to adapt to your body. It’s about knowing your body and what it can and can’t do, even if you don’t understand why. At the end of the day, no matter what your doctor says or what you read on the internet, you have to trust how you feel and what works for you. For me, keeping a routine and frequenting familiar places is something that is helpful. As always, I’m interested to hear what others have to say. Do you find routine and familiar places important with regards to your symptoms? Hit up the comments and let me know!