On the benefits and pitfalls of routine while living with MS
I struggle to recognize when a routine needs to be altered to fit my situation
My family and I just returned from a vacation to the place I wrote about in my very first column for Multiple Sclerosis News Today, only not to the same house. I can’t make it up and down the stairs there anymore, so my wife found us a wheelchair-accessible rental just down the beach. It worked out beautifully for all of us, and we had a fantastic time.
Still, when it was over, I was glad to get back to my own home, because I missed the familiar setting and my daily routines.
The wheelchair ramp leading into the rental worked great, but it’s not my regular ramp, so I was much slower using it and getting over the threshold. The bed was very comfortable, but 4 inches higher than mine at home. You might not think this makes much difference, but for someone accustomed to transferring into a bed that’s a certain height, it took some getting used to. These are two examples, but there were other instances, both large and small, that made me long for the comfort of home.
Throughout my life, routines have made things easier for me, but I never used to rely on them too much. If a routine streamlined a process and passed the common sense test, I was more than happy to adopt it. However, if it caused more harm than good, I took great pride in being able to adapt quickly. In the last decade, disability brought on by multiple sclerosis (MS) has made me much more dependent upon routines, but I keep catching myself being slower to adapt. Unfortunately, that doesn’t make sense when dealing with a disease that constantly changes.
Routines are like habits. While I may not always go to bed at the same time every day, my wife and I have a routine for transferring me into bed and settling me in for the night, whenever that may be. We also have a routine for going to the bathroom, showering, getting in the car, and going outdoors. The first time we did any of these things, we had to think about every step in the process. Now we do it automatically, which frees up time and mental agility. If you’re like me in that cognitive fog is a symptom of your MS, mental prowess is sometimes in short supply.
Like habits, routines can sometimes be bad and difficult to recognize and change. I haven’t had to abruptly change any routines, but I do struggle with recognizing when one needs to be altered to fit my current situation. I have to be careful that I’m not doing something the same way because it’s comfortable rather than effective. If it takes up an excessive amount of time, energy, and thinking power, or if it’s harming relationships, then that’s false comfort and it’s time for a change. My biggest problem is that some changes are small and easy to overlook. I’m getting better at this, but I’m not there yet.
My many years in the Army made me both appreciate the value of a good routine and grind my teeth when someone said, “But we’ve always done it this way.” Tradition has its place and looks nice on a parade field, but it means absolutely nothing on a rapidly evolving battlefield. Routines are every bit as valuable when living with MS as they were in the military. Just don’t let failure to adapt when a routine no longer makes sense set you back in the fight.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Merlene Cook
I too returned from a VRBO trip with family. I stayed on one level. The house suited everyone but it was not equipped with handicap features that I rely on. The 3 steps leading up to the house in 3 different locations did not have handrails. Nothing thing to grab on to when standing up from the toilet. All the furniture was low to the ground, including the bed height. My nieces put me in bed but i rolled out of it and needed assistance throughout the night. Their sleep was constantly interrupted every night. There was not a standard height size chair inside and out on the balcony. No non skid pads under the area rugs. They removed the rugs. I left my home tired, so my brain was challenged constantly. I have no balance and depend on my rollater transporter. I did not complain about my struggles because others felt it was a perfect place. I worry about spoiling it for others. They remind me that it is no big deal for them seeing to my needs. I was so glad to get back to the safety net of home.
Benjamin Hofmeister
In yet another example of my past words coming back to haunt me, I used to inwardly sneer at people that said they couldn't wait to get back to their own home. I get it now. I know where everything is here, I know every little trick to moving around a room, and everything is arranged so that it makes sense to me and my disabilities.
I saw a wheelchair accessible RV not long ago and thought about buying it so that no matter where everyone traveled, I could just take the comfort of home with me.
MADELINE l NEWTON
i agree with you on when we find a good routine and it makes life much easier . yes for living with MS or any disease easier to live with is great ...take care and keep enjoying life ...