Category: MS-Cellaneous

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How To Treat Someone With Multiple Sclerosis

This is actually the post I was going to put up last Sunday, but God had other plans. Plans that changed my life and made me incredibly happy! If you haven’t already, please read my last post, “Who’s Next? I’m Next”. And if you have a few bucks to spare I could use your help. I am getting closer every day, but I haven’t reached my goal yet. Here is my link if you are able to donate.

https://app.cocopay.co/ebony.sims

This post came from God while I was clear minded in the shower. I had been struggling to put words into sentences that make sense. So I know this post isn’t from me.

I have always been an independent person. Some of my independence was by choice and some by necessity. So when I was diagnosed with Multiple Sclerosis(MS) I was determined to continue to do as much for myself as I could. Even though, there are things I struggle with now, I do the best I can. According to my friends, “I be doing too much.” Lol. One thing MS has taught me is to accept help. If someone ask to carry something for me, even if I can do it, I let them. I look at that as saving energy for later. But be aware that everyone is not at this stage. Hell, I am just getting here.

Multiple Sclerosis is not a reason to pity a person, assume that they are incapable of things or assume that they are capable because they do not look “sick”. I believe that everyone has something to deal with in life. And unless a person tells us, we don’t know what it is. We don’t go around pitying people for presumed issues. So let’s be careful to not pity people for known issues. When I was first diagnosed I told as few people as possible because I did not want to be pitied. MS is not a death sentence. It just has the possibility of altering one’s life plan. Or it can help a person to set about creating a more interesting life plan. So many ways to look at this and I am always finding the positive ones.

Now, MS can be a confidence killer. Especially when people remember you a certain way and now you are no longer that person. Yes, your friend used to walk 2 miles with you. Uh…not now. Don’t say, “You can do it.” No, she can’t but I am sure she wish she could. And believe me she is feeling some kinda way about the fact that she can’t. This is the time to alter one’s life plan. Allow her to offer other activities she is capable of doing and do them with her. One side effect of MS is loneliness. We still want to be included dammit! Everyone eats, I like to eat. Lol

MS isn’t always visible. It’s symptoms are so varied. Even when someone is walking normal and they look like nothing is wrong, they could have fatigue. Or brain fog. Or blurred vision. Or aching hands (just heard this from a friend). And the list goes on and on. Yes, I parked in the handicap space and I am walking fine. But when I leave the store it is going to be a whole different story. It took a while for me to “look sick”. And a person “looking sick” should not be the definition of sick. This is a huge misconception among people with autoimmune diseases that take a while to show but the person is feeling it the whole time.

These are my thoughts in regards to how I want to be treated. I am sure that others with MS may share the same thoughts, but they will definitely have some of their own. If there is someone in your life with MS or any other debilitating disease or disorder, ask them how best to honor them. Hell, this should be across the board for people in general. We had this training at work in regards to customer care. The trainer said the golden rule, “Treat people the way you want to be treated”, no longer applies. It is now, “Treat people the way they want to be treated.” I felt that!

I love shower thoughts! I bet many of businesses have started this way. Next MS Awareness month in March instead of me sharing facts and experiences, I can have a person/people with MS share their journey. Everyone’s journey is different with some similarities. It would be great to share my platform and bring more awareness to this disease. And you, my faithful readers can get a break from reading me droning on and on. Lol.

This month flew by. Life as we knew it continues to change and evolve. We all are altering our life’s plan. One thing should always stay consistent, continuing to be well and whole. If you have any questions in regards to MS, please leave a comment below or you can email me at elsims27@yahoo.com. Much love 🧡💚

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MS-cellaneous Pt. 4, Fall Edition

For the whole month of October I am going to be talking about multiple sclerosis(MS) even though it is not MS Awareness month. March is MS Awareness month and I have some posts that you can check out if you want to read my MS story. If you go on my blog page at www.ebonyoneverything.com, there is a category on the right side or bottom of the page called MS-cellaneous. This category contains all my previous posts regarding Multiple Sclerosis. Someone great was born in October who just happens to have MS, me! I am speaking about MS because I was challenged by a group of ladies to do something that makes me feel uncomfortable. Talking about MS makes me feel uncomfortable. I don’t want to dwell on it. It is a part of my life just like work, sleep and the weather. These are topics we briefly discuss and move on. That is how I like to treat MS. Well, I accepted the challenge, so let’s talk.


On Friday, September 25th, I stuck a needle into my thigh muscle. The syringe contained my new MS medication called Avonex. Avonex is an interferon beta-1b medication that helps to inhibit inflammation that causes MS flare ups. Avonex may slow the progression of physical disability in people with multiple sclerosis. I had a nurse educator, Renee, there with me to coach me through the process. She came with sample placebo syringes for me to practice on a fake piece of flesh a few times before I did it on my actual flesh. It is so much easier stabbing fake meat versus real meat. Lol. Ok if you have read this blog at all, by now y’all should know I’m crazy. If you are new here, please read some previous blogs. I don’t take much to heart. Though an MS diagnosis is a pretty serious issue, I approach it with humor. How else do you get through a day?

Injection Day Prep


The start of Avonex had me injecting only 1/4 dose with an increase of an additional 1/4 dose until the fourth week when I use the recommended dosage. The shot is injected once a week. I usually like to administer this type of medication on Fridays. One of the side effects is flu-like symptoms. Friday injections allows me to recover over the weekend, if I was to experience any side effects. The last time I started an injection medication the side effects didn’t hit me until the middle of the week. I had to be wheel out of work in a wheelchair, which I do not use, and driven home by my coworkers. My body locked up and I couldn’t even walk or bend my legs. What a day that was. Took a couple of Aleve and was back in busy a few hours later. Everyone was freaked out though. Especially my boss. Couldn’t return to work without a doctor’s note. Lol. I don’t blame her.


This will be my fourth medication. I am hoping it will either be my last or I will be able to use it for at least a few years. I am starting to get discouraged with these medications. They all have scary side effect warnings and I just don’t know if they are even working. But the goal is to stay mobile. So I am willing to give it a try.


Since I have accepted the challenge that means I am available for any questions you may have in regards to multiple sclerosis. Whether it is general information about the disease or personal information about my life with the disease. You can leave your questions in the comment box below or email me at elsims27@yahoo.com. This stands true for the whole month of October. After that, I ain’t doing it. Lol. No, I will still be available. I did not really know what MS was until I got it, so I don’t expect anyone to know about it unless they have it or someone close to them has it. That is the way it goes with most diseases. So I can be your MS educator.


The weather is changing. It is getting cooler. People will be in the house more. The leaves will turn all those beautiful colors that represents my favorite season, fall. But we are still in the middle of a pandemic. So masks will still need to be wore and care taken with your health. Continue to be well and whole. Much love 🧡 💚 

 

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MS-cellaneous Pt. 3

Today as I was walking down the steps to leave out for my sunrise adventure,  I seen one of my neighbors walking up. I opened the door for her. At this point she proceeded to hold the door to let me out. I had a few bags in my hand so when I stepped out I was off balance. I started to lean to the left, which is where she was standing, and almost knocked her down. I balanced out in time, thank God. Lol. Would have been a little embarrassing to wipe my neighbor out. She was like, “I wouldn’t have let you fall”. I told her that was good to know. Smh. MS strikes again. I have so many stories like this.
At my job one of my duties is to answer the phone. I talk a lot and I talk fast. So I am immediately annoyed when people are on the phone taking forever to say what they have to say or humhawing around. I usually try to finish their sentences so that whatever it is they need can be taken care of quickly. The other day I thought about how I used to be a fast walker. My little legs would move to get where I needed to be and I wanted all slow walkers out of my way. Well now I am a slow walker. I am annoyed at my own self. Lol. There is at least one bright side to walking slow, I notice so much more. Instead of speeding past everything in life, I have the opportunity to experience it. To be in a particular moment for a little longer. To glean more from watching a situation unfold right in front of me. I notice every crack in the pavement, each slight raise of the ground, the distance from Point A to Point B. These are precautionary measures. But within those times, I am aware of everything else. Not exactly how I would have chosen to live my life. Yet interesting none the less.
Now let’s go back to the slow talkers. After having this painful slow conversation with an individual on the phone, I said to myself and my coworker, maybe I need to be more understanding. One of the symptoms of Multiple Sclerosis is trouble with speech. Here is a list of a few.
  • “Scanning” speech, when a person’s normal speech pattern is disrupted with long pauses between words or syllables.
  • Slurring words. …
  • Trouble changing tone of voice.
  • Nasal-sounding speech.
  • problems with volume, strength or quality of your voice.
  • weakness of the chest muscles, making breathing and speech difficult
One day it might be me. And if it is, I would want people to be understanding and give me an opportunity to say what I need to say. The lesson of slow down and live in the moment was brought to me by MS. I just need to apply it to other areas of my life.
I continue to stay thankful throughout this journey. I know that it could be worse. I have read other people’s Multiple Sclerosis journeys. I recently read this women’s where the doctors diagnosed her with Postpartum Psychosis. It took the psychologist to diagnose her with MS. What the hell? And this woman had had multiple MRIs and no one caught it. For years she dealt with paralysis and speech issues. But it was all in her head. Which literally it was. There was lesions on her brain from the episodes she had gone through. This was years ago but it is still happening today. Even though I am not a fan of medicine I do believe that it can assist with slowing down the progress. So to go years in and out of episodes without any medication can cause this disease to progress rapidly.
To go years without a proper diagnosis experiencing the signs and symptoms, the diagnosis can be a relief. Multiple Sclerosis is a disease that can affect so many areas of one’s life. My heart goes out to anyone who has it. Though I may not experience their particular struggles, I can empathize with their journey. In my day to day life, I don’t really talk about MS. I don’t believe that discussing it and making it a focal point serves me well. I am more focused on living a life that is full of light, laughter, adventures and possibilities. But if anyone has any questions, wants a better understanding or wants to discuss their own personal journey with Multiple Sclerosis, I am available. The door is not closed, it’s crack. And I will fling it open and welcome you in.
The world is in a crisis right now. There is a deadly virus on the loose and it is affecting so many people. I wish I had words to soothe but honestly I am terrible at that. I will just say if you fit the description of someone who is more likely to get the coronavirus, be careful and protect yourself. I don’t want anyone to live in fear but to live with caution. Please continue to be well and whole. Love you all.

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