Month: March 2022

Before multiple sclerosis, my two favorite seasons were Spring and Fall. I love Spring because it has just the right temperature, usually high 60s to high 70s. Perfect! I love Fall because I can wear comfortable clothes, the temperatures aren’t too cold yet and of course the changing colors of the leaves. After living with multiple sclerosis, they are still my two favorite seasons, but I have added a new reason.

Multiple Sclerosis Fact #23

Extreme cold and extreme heat makes a warrior feel either stiff as a board or limp as a cooked noodle.

Summer can bring extreme heat and Winter temperatures can drop below zero. Also, Winter brings snow and ice. Walking in the Winter adds an extra layer of danger to an individual who already has issues with balance, foot drop or muscle spasticity due to the cold weather. My feet can get so cold in the Winter that I don’t feel them at all. Add in some stiffness, and it is a wonder how I even get around.

Summer can have awesome days and relatively reasonably temperatures, but then there is days that are in the mid 80s to high 90s as well. Those days require me to be in someone’s air conditioning. The heat saps all the energy from my body and the ability to move becomes damn near impossible. I feel like I’m going to pass out and my feet feel like cement blocks. They call this feeling a pseudo-exacerbation, which is when a person experiences symptoms of an exacerbation, but the symptoms will go away once the body’s temperature gets in a normal range. I’m sure if someone offered to carry me when I am have a pseudo-exacerbation, I won’t say no 😆.

Now to be fair, I am speaking from my own experiences here. I know there are warriors who thrive in the heat and in the cold. Like, I said in the previous posts, every warrior embarks on their own unique journey. For me, I will take Spring and Fall as my only two seasons, 6 months each. That would be the best! Multiple Sclerosis aside, what is your favorite season and why? I would love to hear from you. Be well and whole. Much Love 🧡 💚

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 🧡 💚

 

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 🧡 💚