MS Strength

I have to tell you that although I’m currently doing physically well (just a short-lived issue with a bladder infection in June), I get VERY stymied with how to occupy my time. It’s a catch-22: I have now down-shifted in order to feel better, but I find myself grasping for things to fill up my time. My busier contemporaries would probably chuckle over this: imagine having TOO much time! But as someone living with multiple sclerosis who is now on Social Security Disability Insurance, I am constantly challenged with finding the right balance of activities to feel worthwhile but not energy-sapped. And being happily occupied is so very important to a person’s overall mental AND physical health.

I have an ongoing relationship with a fantastic social worker. She keeps me on the path of sanity (for the most part) and she guides me with issues that are too overwhelming for me to tackle on my own. One of the greatest things she recently introduced me to was a day planner! I know this may sound crazy– I DO know what day planners are used for— but I had never considered using one, even while out in the workforce. I always assumed they were for “executive types”: business people, accountants, entrepreneurs, doctors, and so on. Not former health field workers and especially not for a stay-at-home, marginally-employed housewife.

Boy was I OFF the mark!

I was complaining one day in therapy to Nina, my copilot, about my lack of direction and my big problem with PROCRASTINATION. I have a tendency to shut down and dally when I have too much time. I need the adreneline of crunch time and deadlines to sometimes get my butt in gear. I basically work best under pressure. With no immediate pressure I find myself falling off the straight-and-narrow path (more times than I am comfortable admitting.) This is when Nina, brillant and practical social worker that she is, went to a bookshelf and produced for me a dollar store day planner. She even told me how she bought up several of them for fifty cents each, since we were well into April by this point. She also told me she had several other patients who had the same problem– for varying reasons— and found themselves without a map. Here are some tips she shared with me and I find them completely invaluable as I piece together my world during the Monday – Friday, 9 – 5 shift:

Write down ALL things you would like to accomplish

I find doing the laundry and picking up dry cleaning to be very mundane, housewife “chores.” Doesn’t matter. Listing these things ensures that even ordinary, boring tasks will get done and it establishes a sense of achievement over the small things (and isn’t divinity often found in the smallest details?) This tip increased my own self-worth and made me realize that I DO accomplish a great deal each day.

Add bigger things that you hope to accomplish

These can be things you would like to get done, such as signing up for a new class or making a lunch date with a friend. They are bits of inspiration among the daily grind. They are not basic tasks but things you would like to do.

Add loftier accomplishments in the margins, giving wiggle room for achievement

Bigger goals can be written down at the top of the month in which you’d like to achieve them. They have more flexible time frames. Glancing at them gives a general idea of the goal, with an open-ended commitment. Some things need more time to develop and be pursued.

Write plans in PENCIL

This isn’t actually cheating. It merely gives some margin for error as life often has its own plans. This also keeps a person from beating himself or herself up by having a bunch of cross-outs or unmet plans. However, erase in moderation! This also opens space for new, spur-of-the-moment plans that would not otherwise fit.

Check off tasks accomplished

Silly as this might sound, checking off items gives the planner a sense of accomplishment and some control over life’s daily duties. Looking back over the month, it also tracks how successful the planner was at tackling things.

Don’t “overbook”

Keep daily tasks at a moderate level. Over-booking can lead to stress and the ditching of plans. Find a level that is manageable and not overwhelming. Lots of non-immediate tasks can be spread out over the course of a week.

Be accountable to SOMEONE

It’s fine to make plans and try to carry them out, but if no one is keeping track, it’s easy to get complacent and procrastinate or completely shun tasks. Who’s watching anyway? Well, have someone in your life ( a therapist, a spouse, a mate, a friend ) check your monthly accomplishments. If you feel you must “turn in” your planner, like it’s a form of homework, it’s less likely that you will avoid your tasks and more likely that you will stick to your plans. As time goes on, you may not need to show your planner to anyone as you become accountable to your new, diligent self.

Reward yourself for completing tasks

Adults need gold stars too! It’s important to acknowledge keeping on track and accomplishing daily tasks. Find an incentive– a new book, a movie, a new shirt, and so on— that motivates success. You don’t have to accomplish everything on your weekly schedule (no one’s perfect), but checking off a majority of items deserves a little reward. You did it……!

It’s now the height of summer in the northern hemisphere and as people celebrate this 4th of July weekend, thoughts turn to keeping comfortable and cool. For people with MS, it’s always a good idea to avoid overheating to keep the nerves conducting as well as possible, but staying indoors on a sunny day can be a big drag. A great way to keep body temperatures down is to use portable cooling devices such as vests, neck wraps, and wrist wraps, depending on your needs. Cathy, at Navigating the Journey of MS, has an online multiple sclerosis store, The MS Shoppe, which sells a variety of these cooling devices. She opened this store with her husband to provide consumers with quality MS merchandise, including MS books, mobility devices, funny t-shirts, nightlights, and other relative multiple sclerosis items.

I recently attended a local Multiple Sclerosis Society function that included vendors promoting adaptive equipment, support organizations, and self-help books. My husband and I lingered at one particular table where a representative was demonstrating adaptive clothing. We watched as he showed onlookers the versatility of his Velcro shirts and pants. “Quick Change Clothing”, he said, “makes it easy for someone with MS or their caretaker to put on and take off clothing.”

This rep went on to explain to us that the company originally tried to market the clothing— which uses Velcro closures on the seams for easy on and off— to professional athletes, but since major athletic outfitters were their major competitors, the company decided to fill the need for people with physical impairments who could benefit from the clothing.

To learn more about Quick Change Clothing, visit the website www.quickchange123.com or phone 212-362-0393.