The Importance Of Routine And Familiar Places To My MS

The Importance Of Routine And Familiar Places To My MS

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.

Familiar places

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!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (22)
  • JULIE SAVENE
    2 years ago

    I really like your perspective on routines. I complain to my husband if the way he gets me up or in the car is even a little different. I never thought it was my MS, I just thought it was me! I am pretty much wheelchair bound. but I can still move my feet/legs a little so that spacial positions are important….I am so used to doing things a certain way that even if they get changed by a foot or direction, I have greater difficulty. So thank you for making me think….

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie! Appreciate you reading and taking the time to share some thoughts!

  • altmar
    2 years ago

    Thank you for your article Devin. I think that it is important for us to plan things as much as we can to avoid unexpected situations. However, it could happen that things go wrong and in this case sometimes I overreact and become nervous and frustrated.
    With MS we must take it easy and accept.
    For example, I go regularly to swim, and every time I finish I am tired and have more problems walking. Sometimes I despair but after I rest and took some sleep I feel much better and more energetic!
    Life is a bitch, but we still can get so much from it 🙂

  • Devin Garlit moderator author
    2 years ago

    Thank you altmar! Appreciate you sharing some of your experience!

  • Parker 1133
    2 years ago

    Absolutely Devin, planning days out is huge i also used to be spontaneous there was something romantic about being spontaneous and waking up not knowing where the day is going to take you. But now, most days are planned out and when things change Dianna was spot on about learning to go with the flow, I think I’m accepting changes better or at least I hope so? LOL

  • Devin Garlit moderator author
    2 years ago

    Thank you Parker 1133! While planning things out is so helpful, I think many of us have learned an awful lot about canceling or altering those plans too! Most certainly par for the course with MS. Being able to go with the flow is such a valuable asset!

  • Dianna lyn
    2 years ago

    Yes Devin, I have to plan ahead, but then I have learned through the battle of MS that plans are made to be broken, but only if we allow them to. It’s a fight that I struggle with every week and my hubby has alot more energy through the weekend than I do, but I just have learned to go with the flow…

  • Devin Garlit moderator author
    2 years ago

    Thank you Dianna lyn! That certainly is the other side of the coin, MS has taught me a lot about breaking and canceling plans too!

  • tfs
    2 years ago

    You have nailed it: I love to be spontaneous, however, as this disease progresses I need to plan my day. Right now, that means I can drive to my appointments (by myself) in another city, but that is my day. I plan the trip around the time. I won’t even double up appointments on the same day in the same hospital. It is too much. I cannot concentrate. It’s better to know my limitations and get the most out of the expertise being offerred. Plus I need to have the family meal planned in advance or organize take out. Or let it go and people get their own that day.
    Daughter was home this weekend from NYC and her 27th birthday was part of the visit. She expected cake and I made it. Truly a pleasure. She had specific menu items and was going to help cook. I needed to itemize for myself. She said, “Man you are so controlling!” We worked it out; I explained my need to organize things in my mind, and it was the only setback in our visit. We ate close to 8:30 pm.which was fine. Though my partner asked if he could help and thanked me for the celebration, (gift organizing, cards, trip to bank) those were my spoons parcelled and used by me. Frankly, it is the way everyone wants it. ……..I cannot get my partner of 32 years to plan or discuss these or any issues with me.
    Thanks for the article. I think I just let off some steam. Wish me Luck!

  • Devin Garlit moderator author
    2 years ago

    Thank you tfs! Letting off steam always seems helpful, at least to me! Consider sharing this article with your partner to help them understand. You bring up a good point about it seeming “controlling”. It certainly can and that’s something Ive discussed with my family at times, explaining that, yes, in a sense I can be a bit controlling, even demanding. That, however, is for good reason! Thanks so much for sharing your experience with this!

  • Lisa
    2 years ago

    This all is so very relatable, especially the part about familiar places. A few years ago now our favorite grocery store closed. It took me quite a bit to get used to the new place we are going then, pretty much all of the last year they had been remodeling and rearranging to match the layout of the other stores in the corporation that bought this one out. I hate it. I just got used to going to the new place and now it’s all different. Yes, this seems like a very minor thing in the whole scheme of life, but it doesn’t feel that way.

  • Devin Garlit moderator author
    2 years ago

    Thank you Lisa! It can seem like such a minor thing to most people, but can have a dramatic effect on people like us! It’s especially jarring when a place we do feel comfortable with decides to remodel or change!

  • eparks
    2 years ago

    This is such a wonderful, relatable article about routines and familiar places Devin. It’s taken me 7 years to finally get my system and I do not like people who approach me with spontaneity. Thanks for sharing This! Thumbs up.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much eparks! I think this is a much more common thing than people realize or talk about! I’m hoping that more folks will see this and have some respect for others’ routines! Thanks for sharing your thoughts, very much appreciated!

  • potter
    2 years ago

    I am the same way, I take for ever to get through my routines in the morning but when I am finished I feel like a normal person. My husband still works and on the weekends he drags me around shopping and to estate sales and going out to breakfast. When we get back home I feel like crawling into bed. He is retiring in a year, I am not looking forward to the tough adjusting time we have ahead. Potter

  • Devin Garlit moderator author
    2 years ago

    Thanks Potter! I have a similar situation, when my wife is off or its a weekend, it can really mess me up. I love having her around, but by the time Sunday comes, let’s just say I don’t mind her going back to work! Hopefully your adjustment period when your husband isn’t too bad! Definitely explain to him the need to ease into change! Thanks for reading and sharing your thoughts, always appreciated!

  • lighty
    2 years ago

    I think you’re right about being in a place you’re comfortable with – that you have been to regularly – helps reduce the sensory overload and possible fear one can have. I’m like that too. I’m always a bit nervous covering a show or play at a venue I haven’t been before. Even going to places I haven’t been to SINCE the MS kicked in presents new problems as I discovered the other day. When your legs are fine and pre-MS symptoms, you rarely notice how many stairs a place may have. But try doing it with MS… it’s a different world.

    A steady routine is very important to me ever since things really kicked in.

  • Devin Garlit moderator author
    2 years ago

    Thank you lighty! You are so right about not noticing steps per-MS. I’ve gone back to places I never thought twice about before and now I look at them with terror! That said, knowing and expecting that ahead of time most certainly gives me an advantage! Thanks so much for commenting!

  • Dimitri
    2 years ago

    Yup. All this sounds awfully familiar.

    In my case I think I use a routine to stave off the confusion that happens if I try to think too much. I need to keep things simple. I absolutely cannot allow myself to do any kind of simple math problems even in my head.

    I think I need things to be the same so I’m not caught off guard and then forced to think what just happened. Things need to be in their proper places because my short term memory is shot and it will drive me crazy looking for things. It will also reduce the chances of an argument with others in the house.

    Even though I’m on disability I still keep the routine of having a couple alcoholic beverages on a Friday night. It’s my way of celebrating another week of surviving life with MS. Hahaha.

  • Devin Garlit moderator author
    2 years ago

    Thanks Dimitri! Pretty much everything you mentioned, I need to be done as well. Keeping things in the same place is pretty essential for me, or I’ll never find them! I echo your sentiments about a few drinks at the end of the week too. I do the same thing and I find it a pretty important part of my existence. A change to feel normal!

  • Molly R.
    2 years ago

    My anxiety has gotten horrible after I was diagnosed. Going to a place I have never been before is the worst!

  • Devin Garlit moderator author
    2 years ago

    Molly R., thank you for reading and commenting. Anxiety becomes a huge problem for me as well when I go some place new!

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