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Have you been asked ‘What it’s like’ to have MS before? I have… and it’s really not very easy to explain… not one explanation can be used for all of us diagnosed since we all differ symptom wise and such.
I usually start off by explaining what MS is and how it attacks. Using the ‘wire’ reference… with the wire coating to explain the myelin sheath. The wire under the coating is our ‘nerve’.
So what is it like to live with MS? That is a very complicated question to answer… because the symptoms themselves are hard to explain. So I have made a little ‘list’ that I can send my friends that ask me the, “what’s it like” question.
No matter how much I sleep, I’m still going to be tired throughout the day. However, even though I suffer from Fatigue, I can’t go to sleep very easily at night. This can be caused by pain and/or insomnia.
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.
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.
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.
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.
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 (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.
This list can go on and on, especially depending on the patient you’re asking. A group of patients may all experience the same ‘symptom’ but they won’t experience it all in the same exact way. Something that I’ve heard a lot is that, it doesn’t really matter how many lesions you might have but what is important is WHERE the lesions you have are at in your CNS (Central Nervous System).
I’ve heard many family members and friends say that I seem to do better and/or look better when it’s during the fall/winter season. And I feel that I am doing better during that time because I do not have to deal with extreme heat.
This blog only covers the “What is MS like?” question and not even all of it. But there is also that question on “How is MS diagnosed?” I think that’s something I can write about at a later time because that’s going to be a lengthy post!
(Ashley was diagnosed with MS two weeks after receiving her degree in Criminal Justice. She is a mother of two little boys and an MS advocate for MSWorld.org & embracing life for what it is and making the most of every day)