Multiple Sclerosis Fact #57

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Unless you have multiple sclerosis, you will not understand the struggle of living with MS. And we don’t want you too! Even people with multiple sclerosis may not understand what another warrior is feeling and we don’t want them too either. What everyone with multiple sclerosis wants is to not have it. Yet, it is a part of our lives. So we push through, we find joy in the big and little blessings, celebrate every month we go without a relapse and live a life as “normal” as possible. We look to our family and friends for support when times may not be going well and we hope that you all will have our backs.

Multiple Sclerosis Fact #57

People living with multiple sclerosis doesn’t expect you to understand. We expect you to listen and respect our limitations.

This fact is extremely important. As I said earlier, we don’t want you to understand what it is like living with MS. It sucks and there is no way around it. What we need is a friend to come sit with us when we are having a bad day, a spouse who does a couple extra things around the house when our legs are weak, or a listening ear when we need to vent about all this disease has taken away from us. What we don’t need is the comments about what another person with MS can do, the “Why are you always tired?”, or anything else that makes us feel worse about a situation we can’t help. How rude is it of someone not living in my body telling me what it can do? Very fucking rude.

If you are guilty of any of the above crimes, just don’t do it again. It is pretty hurtful and not at all helpful. I just gave a few suggestions on what someone with MS needs. I think the best course of action is to ask your particular MS warrior what they need to feel supported. They may not need anything at this time. Or they have been in need and didn’t know how to ask for help. I know for a while, I didn’t ask for anything because I didn’t want to be a burden. My friends would get so mad at me. Now, I will ask, a little 😆.

Hope you are enjoying my multiple sclerosis facts so far. If you know of anyone who can benefit from this post or any other posts, please share this content with them. Stay well and whole. Much Love 🧡 💚

Multiple Sclerosis Fact #2

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The first known, but not diagnosed case of multiple sclerosis was in 1395. A young lady by the name of Lidwina, exhibited the symptoms of MS starting at the age of 16. The first diagnosed case of multiple sclerosis was in 1868 by Jean-Martin Charcot. He noticed his patient’s symptoms were different from the other disease that were already known. The first “successful” multiple sclerosis medication came about in 1993. Wow! Those are some big gaps in time between awareness and treatment. Which leads me to the next multiple sclerosis fact.

 

Multiple Sclerosis Fact #2

 

Doctors still don’t have a clue and MS warriors are paying the price.

 

Since 1993 and today, doctors only have a handful of “possible” causes for multiple sclerosis and medications are more of the same types of treatment. Back in 2017, there was an article stating the Epstein Barr Virus may be a cause of multiple sclerosis. Well, they just reintroduce that finding again this year, as if it was a new piece of information. I was diagnosed 10 years ago and to be honest, not much has changed in regards to the information I have received. Low vitamin D, environmental factors, genes and viruses are the most common causes of multiple sclerosis yesterday and today. Once again, nothing new.

Now, I have been thinking. I heard a rumor that when a woman living with multiple sclerosis gets pregnant, her symptoms may either go away or are not as severe. I can’t say for a fact because I have not experienced pregnancy as an MS warrior. Why don’t the doctors or the pharmaceutical companies look at what changes in a woman’s body when she is pregnant and try to replicate those effects with medication? I don’t want to have to get pregnant to experience feeling normal again. But I would be willing to try a medication that did.

I truly hope that over the next few years the medical field well start to make real strides in finding out what causes multiple sclerosis and better ways to treat the disease. I think we are long overdue. Multiple Sclerosis Fact # 1, MS Sucks! Be well and whole. Much Love 🧡 💚

Multiple Sclerosis Fact #147

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This is Multiple Sclerosis (MS) Awareness Week. I know, I know, it is technically MS Awareness Month. I guess at one point in time it was just one week and was eventually expanded to the full month. MS Awareness and Education (I have been leaving a word out) Month was established by the National Multiple Sclerosis Society in 2003. MS Awareness Week focuses on warriors and their stories. It gives people living with MS an opportunity to discuss their singular experience. If you are unaware, MS affects every single person differently. Often called the snowflake disease. When a warrior shares their story, it allows the world to see all the ways that a person can be effected. Oh and don’t let me start counting the ways.

So here I am, telling my updated MS stories this week. The facts I will be sharing with you aren’t scientifically proven. They are Ebony proven. Which means they are not up for debate. Unless, you walk my walk and live my life, these facts cannot be disproven. And the numbers are also randomly selected by me 🤷🏾‍♀️.

Multiple Sclerosis Fact #147

Carpet is the devil and rugs are its little demons.

I hate carpet and rugs are a close second. I cannot manage to walk on carpet or over a rug without tripping. It is unavoidable. Unfortunately, my walking has gotten worse and I cannot pick my legs up fully to walk. I kind of scrub my feet across the floor. My right is worse than the left. This unflattering and unconventional walking style does not work well on uneven surfaces, things that can catch my feet, and any little area unseen by the human eye. Walking is a concentrated effort. And occasionally I have the nerve to try to walk fast. Never a good idea. Thanking God for all the times I could have hit the floor, but didn’t 😆.

More MS facts to come this week. I will also highlight another MS resource that I hope you will share with any warriors that you may know. I cannot spread the message by myself. I need your help. Stay well and whole. Much Love 🧡 💚