So, what’s it like living with Multiple Sclerosis? That’s one of the most asked questions I get from people. And it’s a question that’s not that easy to answer. Trying to describe the physical and mental difficulties and limitations that I experience is met with some very unique responses. I’ve been told to “take tylenol” for the pain in my feet, to “eat more potassium” for the cramps in my legs, and to “take B12 and energy pills” for the exhaustion. When I explain that those things simply don’t work, they look at me like I’m crazy. After all, it works for them. Some people just don’t seem to understand that I’m not like them. I have a damaged Central Nervous System due to more than a dozen lesions in my brain and spine that have totally wrecked my nerves in those areas. Some have healed well. Some haven’t.
The pain I experience is not because I’m in real pain like someone stepping on my foot. I’m in pain because my nerves are misfiring and sending pain signals to my brain when there really is no existing pain in the first place. No drug can remove that kind of pain. You would have to stop the communication process, not the actual pain. There are some medications that help, but I haven’t found one yet that works for me.
The numbness in my legs is not something that goes away by uncrossing my legs like someone does when their foot falls asleep. My legs are numb, experience that “pins and needles” feeling, and cause pain to shoot through my body every minute of the day. No amount of foot elevation or exercise will wake them up.
The exhaustion I experience isn’t because I didn’t sleep well the night before or that I’m not eating nutritionally. It’s a debilitating symptom of the disease that is not remedied by natural herbs or better sleep. Although those things can help, it’s not a “fix”. Making it through one day without having to take a nap is a good day.
I also deal with vision problems that can’t be corrected with glasses, dizziness, muscle weakness, and of all things, heat makes everything worse. That hot shower most people enjoy, I can’t take one or my muscles will seize up. That hot tub soak, an impossibility. That day at the beach, even in the shade my symptoms are hard to deal with. That trip to the mall, within thirty minutes I’m done. Just walking across the parking lot of the grocery store presents a challenge that some days I just don’t want to face.
MS, by many, is called a silent disease because so many people who suffer from the disease that still have the ability to walk look perfectly healthy on the outside. Most of us try to hide the pain and the struggle, but as we go about our day, we deal with all the things that you can’t see.
Yet even with all that I am going through, I’m thankful for the family and friends who stand by me, who listen to my frustrations and fears, who try their best to understand my struggle, who continually pray for me, and who love me regardless. I’m thankful for a pastor and a church family who are a true example of Christ’s love in action and have blessed me greatly. And most of all, I’m thankful that God is holding me up and walking me through this time in my life. I am able to go through this with joy in my heart because I know that God will use this experience for His glory. My life belongs to Him and as long as I have breath in my body, I will encourage all those He brings into my life with the same hope and joy that He has given to me. There is nothing, not even a chronic disease, that can stop me from being used of God and sharing His love with others. It makes living life that much sweeter.
Excellent description. I hope everyone reads this. You are an inspiration and encouragement for everyone who has a problem. It is your faith that makes a difference in every issue in life. I pray people see that.
Thank you Susan. You bless me!!!
Susie posted this on FB. We went to High School together. I don’t remember when you were dxd but you have summed it up pretty good. I call it a roller coaster you can never get off. I was dxd in 1993. I know my oldest daughter had a hard time at first. She would say Mom you look fine lol. Only another person who has MS can totally understand! If you ever need anything just contact me
Thank you so much for posting this. It is the perfect explanation of what so many of us go through. My faith is what gets me out of bed every day. I have often thought what we go through doesn’t just have to do with us but it also has to do with those around us. You are a great example of that.
Bless you.
Thanks Lisa for stopping by and reading. And you too Pam. I love how, if we let it, a difficult journey can be used mightily by God. I agree with you Lisa, what we are going through isn’t just about us… it’s about the hundreds and thousands and millions of people that will be affected by our response to the trial. People are watching our every move. I pray we all be true examples of Christ before them.
Blessings!!!
Loads of love and respect from India, keep up the faith and stand in the battlefield,cause inadvertently you are a source of inspiration to many to stand the ground. You are in our prayers.
With Love
Solomon Raj
Thank you Solomon… I appreciate your prayers.
I’m just seeing this now, although its been written over a year ago. My brother was diagnosed as having MS for 7 years. However, someone told him to get checked for Lyme’s disease-because the symptoms are identical, so he did. It came back positive and on that day, he found out he doesn’t have MS. I met a lady this past spring. She was diagnosed as having MS for almost 25 years. Finally, when she was at her weakest, the Dr sent her home with her “death sentence”. She could barely walk, and her husband wanted to leave her. Someone told her to get checked for Lyme’s disease and she did. The first blood test came back negative, so she went for the second test, which also came back negative, she then was told about a spinal test and had that done as well. That came back as positive that she did in fact have Lyme’s disease and NOT MS. When I met her, she had just purchased a bicycle at a yard sale to ride, because her body was completely healed of all symptoms. I dont say this to you to bring you any false hope, only to share that if you can get tested for it, it might bring you an answer that you haven’t found yet. and If you have, and you do have MS, my prayers are that God touches you with His healing power!
this may seem not even as what you are going through but I went to neuro dr because I was light headed. He ordered MRI and MRI reported some 4 or so little white spots but nothing definite MRI was inconclusive. He said this may be nothing but to come back in 6 months for another MRI. He said that based on my history and what he sees that chances are likely I do not have it but the waiting is the torture for me. I get on web and i read horrible things and It scares me and all of a sudden now I have these symptoms that I never had or noticed before the dr told me this. I am full of fear and anxiety but yet I am a christian and believe in God but yet my fears consumer me. Dr said high chance I don’t have it. People sometimes have these small spots. People with high blood pressure, or migranes or diabetes, chich I have none of these. Again, he said too soon to tell it can be nothing serious but he said worse case scenario may be M>S they have to always give you worse case. I need to hear a word from you please as to what you think. God Bless you and thank you for this page