It Takes a Village to Navigate This Life with Multiple Sclerosis

By Penelope Conway

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just couldn’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up.  You deserve to be happy.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Prioritizing Needs = You

By Lauren Kovacs

You would think after 20 plus years of MS and three kids I would be good at prioritizing.  I struggle with this monster to this day.  It is not always easy to slay this dragon.  It is relentless and seems to have many lives.

Mentally or on my phone, I try and note my path. I try and tackle one, maybe two, things a day.  Try being the optimal word.  I often plan the week out on Sunday evenings.

It can be hard, too, when prioritizing has a roadblock called “help”.  Many of us rely on help from others.  We end up waiting patiently, all while cooking in stress and anxiety.

I know beggars can’t be choosers.  As if needing help for simple things is not hard enough, we must learn to function on someone else’s schedule and timeline.  Their priorities never click with yours.

Make “you” the priority.  For example, we go to 10am mass.  It is kind of far and my sons are alter servers.  I make sure they don’t smell and are presentable, and then they help me.  Even with all older boys getting out the door is hard.  Being a wrinkled mess, nuclear breath, and non-matching clothes don’t bother them apparently.  Yet, my shoes are tied and I am always ready.

I get up at 6:30am and take my medication, eat, get dressed, do my eyeliner several times, hair only goes into ponytail or down and do any other leaving the house stuff.  I save the things I can’t do for later.  Some days I am completely ready on my own and others I am not.

Yes, it drives me insane, after 20 minutes I can’t tie my shoes.  I may have irritated my ears trying to put earrings on, but at least my eyeliner is straight.  Some days I can’t button my blouse or fix my collar.

Part of prioritizing is letting go.  I only wear silver earrings without those little backs.  They may not be super matchy-matchy to my outfit, but I have earrings on.  If they were there from days before, no biggy.

Trying to go with the flow is torture for many of us.  Most MS folks are planners.  We usually have plan B, C or maybe even plan E. “E” is usually the “enough is enough” plan.

Is it essential to survival that I have different earring on?  Am I at least modest in my dress to go to church?  I hate dresses, but I make sure my pants look nice.  Are my pants easy up and down?  How easily can I get to the bathroom?  The wheelchair does not fit in there, but the walker will.  Are my bowels and bladder empty?

Priorities change like our MS does. Factor in everything.  Is it a huge deal that you had to wear sneakers?  Yes, the black boots would have looked much better. The dress pants would look good, but they have a button and zipper.  Are my fingers working today?  Will I be too tired?

Overthinking might, in some cases, be helpful.  Choose the path with less stress.  Ask yourself what you can do by yourself, if you built in extra time. If I just can’t button my shirt, I wear one without buttons or ask for help, if time permits.

Prioritizing can be exhausting.  Even making phone calls is tough, when your speech is garbled.  I worry someone will report me because I sound drunk.  It gets worse as the day progresses.

I try and keep appointments for late morning.  My day is prioritizing.  Everything comes before my afternoon nap. Once I nap I wind down the day.  My descent into more MS speeds up after lunch.

Making “you” important.  It is a balance to do this on top of family needs.  Don’t brush your wants and needs aside.  I may want my hair pulled half back.  Find a way to meet that want.  I don’t mind having two hairstyles, but there are times I want something different.

Putting make up on is very hard. My eyeballs are used to being stabbed with mascara wands. Baby wipes are great for removing eyeliner that left a wiggly path.  Don’t give up on you because MS is in that path.

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