With MS, We All Need to Find What Works Best for Us
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Flipping through an issue of the journal Multiple Sclerosis and Related Disorders this summer, I was struck by something I read tucked into a long research paper about the effectiveness of cooling garments for people with multiple sclerosis (MS).
It must be said that here in Ireland we didn’t have much of a summer. Though we had the warmest June on record, it was preceded and succeeded by the coldest and wettest versions of May and July to have been observed. Only the most heat-intolerant would have been affected.
I suppose climate change and MS could be a subject for writing someday, but that’s not what caught my eye.
In the discussion section of this paper, tucked in with language like “more research required” and nattering words like “appears,” “could have,” and “may” — which can be so frustrating to a patient who wants firm answers — was a phrase that made some of the most sense I’ve read in medical research texts.
The authors had looked through a number of papers on the effectiveness (or ineffectiveness) of a number of cooling devices and garments. They concluded that “cooling garments can improve physical function for people with MS,” but that no one particular garment worked better than another and that they cause no harm.
Fair enough.
Then they stated, “People with MS should experiment with different cooling garments to determine their preference.”
What a bright flash of the obvious, but it was nice to read it from the medical professionals.
We All Need to Experiment
We need to find our own way sometimes. We should try things out, see what works and what doesn’t work. We should attempt, we should stumble, we should talk to others who have tried things we haven’t. We should find the path that best suits us, our families, and our lifestyles.
No one way of living with MS works for all of us or, perhaps, even most of us.
We often hear how no person’s MS is exactly like another’s. I’ve read of it as a snowflake disease, and it’s true!
We should experiment. Be it a stretching program or mindfulness, exercise or assistive devices, hand controls for the car, or moving to a more comfortable climate, we should see what works for us.
And we should share our experiences. Share them in self-help groups, online communities, and with our medical teams, because surely they should know what we’re doing and they can offer up our wins to others as well.
But We Need to Experiment Safely
One other phrase that’s important to remember from the lines of this study is this one: “Since none of the cooling garments caused harm …”
Before we go trying the new fad diet or going off meds or any of the myriad of lifestyle options we may choose to explore, we must ensure that they will cause no harm.
Many will know that I hold fast to Thomas Jefferson’s saying (though it wasn’t about health-related issues): “It neither picks my pocket nor breaks my leg.”
If what we want to try isn’t financially or physically harming, then I say give it a go.
And then let others know how it went. We’re all rowing our own boats through this storm. Perhaps you’ve found something that helps you that will help others.
Wishing you and your family the best of health.
Cheers,
Trevis
My book Chef Interrupted is available on Amazon. Follow me on the Life With MS Facebook page, and read more on Life With Multiple Sclerosis.
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