There’s a woman I know, I’ll call her Tipsy. Tipsy has MS too.
Tipsy is very unsteady on her feet. She shuffles across rooms moving her feet about 5 inches at a time. In the nicest way I know how, I’ve suggested she use a walker for safety, telling her how much mine helped me when I started using it. She doesn’t think she needs one. I watch her, knowing a fall is inevitable and hoping I don’t witness it.
I understand her. I myself held out as long as I could before allowing myself to use a walker. I waited so long to use any help, in fact, that I completely skipped the cane phase of my decline. I worked very hard to convince all of my body parts to cooperate in getting me from one place to another. I eventually tired of being scared while pretending I was normal. When I finally tried using a walker, it was a huge relief to realize how stable I felt with it in front of me AND how much more I could do and farther I could go with the help it provided.
Sometimes the reasoning not to use equipment is valid – we must keep moving and exercise what works. Sometimes people who refuse to use mobility aids are prideful of their independence and don’t want to be seen using anything other than their own power. They view this as courage (“I can do this by myself”) instead of as cowardly (“I refuse to be seen as frail/less than independent”). The irony of not using mobility equipment when its needed is that a possible fall will most likely result in an increased dependency on it.
I have now adopted a theme of preservation. I am determined to maintain the abilities I have for as long as I can by safely using them but refusing to put myself at risk of falling. This quest to retain ability and strength takes a combination of courage and healthy fear. I used to think I was brave for not using a walker. Now I think I was a coward for being concerned about how others perceived me and not overcoming my own pride. Any accident would result in further loss of independence and increased isolation. Any fall I may make will not just affect me, but the people who care for me. I would require much more help and attention should I add a sprain, bruising or a broken bone to my present physical condition. Bodily damage from a fall or stressed muscles would lead to an increased level of care required. While it may seem to others that my hesitancy is cowardice, it is on the contrary sacrificing what I might want to do for what is best for everyone overall.
There is yet another thing to consider. Everyone has a limited amount of attention/thinking capacity. We laugh when referring to someone who can’t walk and chew gum at the same time. For most people, both of those things are automatic and don’t require any effort or thought to do them. When much concentration must be focused on getting muscles to move, less is available for anything else. Forget chewing gum – when I walk, even with a walker now, I need all of the attention I have focused on how my legs are moving and where each foot is going to land. It takes so much focus to propel my body forward that I cannot walk and talk at the same time. Often I cannot even think and walk at the same time. Any help with movement from another source increases my attention for other things. When I first started using a walker, it not only offered stability, but it freed some of my attention for thinking and talking. Further down the road, when I started using my scooter (and therefore sitting), I rediscovered conversation!
The person who doesn’t want to give in to using a cane or walker or scooter or wheelchair could be better off by trading pride for increased ability in time, distance and/or focus. It’s really more about what is gained than what is lost.
Out of consideration for others, I will not put myself at an increased risk of a fall and injuries from it. I will err on the side of safety for my benefit and for my loved ones. A path that looks easy to an able-bodied person appears like an obstacle course for me. Choosing not to tackle that obstacle course does not mean I am a coward or lack adventure. It means I am choosing wisely, saving some energy so I can do more and go farther….and maybe even have a conversation. I hope Tipsy understands that soon, before she has a major fall.
Great blog and perfect descriptions. Pride and acceptance truly are part of the new normals MS can bring about! Thank you for your positive spirit and reminder! 🙂
Thanks Catherine, so nice of you to comment!
These are all really good points. It’s better to go to a physical therapist and put together a program of exercises and stretching to maintain strength and mobility. Continuing to “walk” after a lack of limb strength and balance make it dangerous isn’t a very effective way to “use it or lose it”, and it’s not a very good way to get around, either. As you say, it can be hard to accept the need for a mobility aid, but they can sure make life a whole lot easier!
So true about exercise. I have a daily routine of things a physical therapist gave me and I figured out myself. I actually hate to exercise, but I like getting out of bed and standing, both of which I attribute to exercise.