Life with MS: What’s it really like?
A lot of people with MS are asked what life is really like living with this condition, but there are so many aspects of MS that are really hard to explain. Further, MS is different for everyone, so there’s no single right answer. Our amazing contributor, Ashley Ringstaff, wrote her own list that she shares with her friends when they ask her what MS is really like.
Do you experience both fatigue and insomnia due to your MS?
When I’m experiencing ‘nerve pain’. This does not correlate to the common phrase “my nerves are shot”. This means by nerves are actually causing me physical pain or discomfort. I suffer from a burning feeling, and sometimes the area that is burning turns red and is hot to the touch, but not always. Nerve pain can also just be flat out annoying, with less pain involved. Like a numbing/tingling feeling, sort of like when your foot falls asleep.
Do you experience pain with your MS?
When I say I’m having an “MS Moment”, that means exactly what I said. My MS is causing me to have a ‘moment’ where I can’t get the words out that I want to say or I forgot what I was talking about or wanted to say all together. This can also be described as Cog-Fog aka Cognitive Dysfunction.
Do you experience 'cog fog?'
Why I can’t walk long distances… Because I have foot-drop on my right foot. Not very noticeable… I didn’t even notice it until I saw my neuro and did “the walk” and they noted my right leg was swinging out to compensate for my foot-drop, which is caused by weakness.
Do you experience weakness in your legs or foot drop?
Why do I have to check the weather before making plans, even if it’s grocery shopping? Well that’s because the weather has an affect on my MS and many others with MS as well. Living in Central Texas, I obviously can’t go grocery shopping or to an outside event in the heat of the day when it’s over 100 degrees Fahrenheit. Not only does the extreme heat make me weak, but it also affects all of the things I’ve listed above like fatigue, cognitive function, walking, etc.
Does the cold weather have an impact on your MS symptoms?
Now how do you explain vision problems? This is a hard thing for me to explain, especially if I’m having that stabbing pain behind my eye (optic neuritis). Things get a bit foggy at times and I’ve actually described it as putting on “beer goggles” when I was in my first big flare up.
Have you experienced problems with your vision?
Have you ever heard someone say the following: