I don’t hide the fact that I have medically diagnosed and confirmed Secondary Progressive Multiple Sclerosis. In fact, I make it a point to make sure people know. Most people who know me in real life know I have MS. Friends know, family know, most general acquaintances whom I see regularly know.
Why? Because my health is my second most important life priority— only my children are more important than my health. My health needs figure into most of my decisions. Even though I have stopped the progression, and reversed most of the symptoms, I do still experience times when I “have MS,” and I need to take MS into consideration when I’m making plans with friends and family, or even agreeing to get my kids to regular activities.
Talking about MS with people can be interesting. Most seem to know little about it, and very few people have any kind of real understanding of what a person with MS experiences on a daily basis. Few people without MS have any concept of the uncertainty and self-doubt that comes with this condition. It’s damned near impossible to make plans with anyone when you know that you might have to cancel at the last minute because of disabling fatigue, sudden muscle weakness, pain, or other symptoms that can appear in an instant. And, the truth is that very few people outside of immediate family really care. Sometimes, not even immediate family care. Multiple Sclerosis can destroy families. It can destroy people.
The stark, blunt reality of Multiple Sclerosis makes people uncomfortable.
And that’s one of the reasons I talk about it. I think I’ve adapted and adjusted to life with MS pretty well. If having a conversation with a stranger can help someone understand, then it’s worth the looks I get for being open.
Multiple Sclerosis is a difficult condition to live with because it’s mostly unpredictable. From one moment to the next you don’t really know what you’ll be able to do. Sure, right this minute I can carry that 100lb box in from the car. But, that doesn’t mean that I’ll be able to do it 5 minutes from now.
When I was at my worst, I was often unable to walk through a grocery store, or across a parking lot. On many days, the simple act of getting myself dressed was a challenge. For a good couple of years I couldn’t put my own hair up in a pony tail— I had to ask my husband or one of my children to help me. There were days when I was physically unable to hold a fork or a spoon. My hands hurt too much.
The single most frightening symptom I ever experienced was an episode of memory loss. After several really good months, and several positive doctor appointments my neurologist had given me the okay to drive again. About two weeks later, I was driving my husband three miles from our home to meet his car pool. I dropped him off without a problem, but shortly after I pulled out of the car pool lot I totally and completely forgot how to get home. I simply couldn’t remember where I was going or how do get there and nothing looked familiar. I pulled into a parking lot and tried to get my bearings. But, I couldn’t. After several minutes I remembered that I had a cell phone, and called my husband. I was terrified. Part of me was afraid to tell him what was going on, but the bigger part of me knew I needed help. When he answered the phone I told him where I was and that I couldn’t remember how to get home. He was in the carpool vehicle and could do little more than give me directions home. Even three houses away from our home everything looked unfamiliar. I recognized nothing until I walked through our front door. Once I was in our house, the entire episode seemed to melt away. My husband called my neurologist and told him what happened, and I went in that afternoon for an evaluation. The neurologist couldn’t tell me what happened, or if I it was likely to occur again. In fact, the basis of his advice boiled down to, “Yeah, Multiple Sclerosis is like that. Be prepared for the unexpected.” I asked him if I should stop driving completely because of this episode and was told no, I could continue to drive because while it COULD happen again, it very well might not.
Thankfully, I have never experienced brain fog like that since. And, with the diet, supplement, herbal, energy and exercise routines I follow, brain fog at any level is a pretty rare occurrence.
My point here is that Multiple Sclerosis is unpredictable, it causes a wide variety of symptoms that are difficult to deal with, and impossible to plan for. Symptoms like:
Numbness in any part of the body
Complete muscle failure
Pain throughout the body
Sharp shooting pains that shoot from one end of a nerve to the other
Difficulty controlling urine
Unexplainable mood swings
Odd sensations throughout the body
Sensitivity to sounds
… and many, many others.
For people with Relapsing Remitting Multiple Sclerosis, modern medicine offers injectable medications that supposedly lengthen the amount of time between episodes of relapse. I have no personal experience with these drugs because I wasn’t diagnosed until after I developed Secondary Progressive. However, I have spoken to quite a few people who have tried the “Disease Modifying Medications”, as they’re called, and not one person thought the injections were worth the side effects.
For people like me, who have Secondary Progressive MS, or for people with Primary Progressive MS, there is nothing modern medicine can offer which will stop the progression. Doctors offer drugs like Neurontin to help dull the pain, or they offer muscle relaxants to ease muscle spasms and loosen up muscles that have lost the ability to move. Medical assistive devices such as walkers, wheelchairs, and catheters are prescribed to get around mobility and elimination symptoms. But these things are prescribed to help the person live with the symptoms. They do nothing to reverse the symptoms, they do nothing to stop the progression. The disease will continue to progress and symptoms will continue to get worse until the person dies.
Sounds like a difficult and depressing diagnosis, doesn’t it? Like I said— Multiple Sclerosis is a bitch.
But, it doesn’t have to be that way. People with MS don’t necessarily have to suffer with unpredictable symptoms, they don’t have to inject themselves with questionable medication that leaves them feeling horribly ill for half the week. They don’t have to take addictive and potentially dangerous drugs in order to get a little bit of pain relief.
There IS another way. I know from first hand experience because I’ve lived it… I still live it every single day.
I didn’t like what mainstream medicine was telling me. I refused to take my neurologist’s advice to “find a good nursing home.” I flatly rejected the idea that my life was over and I was going to become a burden to my family before I turned 36.
Instead, I sought out people who were managing their Multiple Sclerosis with natural methods, I talked to people who rejected the drugs in favor of diet changes, supplements, and effective herbs. I learned everything I could learn about MS and the immune system.
And as I put what I learned into practice, I started to improve. At first the improvements were small. I was able to dress myself without help, I was able to walk across my living room without hanging onto walls and furniture for balance. Then, I was able to see well enough to read again.
It’s been more than 10 years since that neurologist suggested I choose my nursing home. I still have SPMS— I am not “cured,” there is no cure for Multiple Sclerosis, but I have improved my health. I have reversed all of my symptoms to the point where I only experience mild symptoms occasionally. I live what is described as an active lifestyle, I run, and hike regularly and I easily keep up with my large family. I run a small business, I teach chess, and I homeschool my kids. Our goal is to grow or raise most of the food we eat,and I do most of the homesteading chores. I have no regular or every day symptoms. I’ve earned degrees in Natural Health, and Naturopathy, I’ve earned certificates as an Herbalist, Reiki Master, Healing Touch Practitioner, and Primal Health Coach. And I’ve learned enough about MS, the neurological system, immune reactions and my own body that if I do experience symptoms I can usually figure out why and eliminate whatever caused the immune system reaction.
I refused to allow MS to be the end of my world.