Roughly 6 1/2 years ago my life was very different. I had trouble holding a fork. I struggled to get myself dressed in the morning. Getting through even the most simple days was a challenge. Muscle stiffness, numbness, dizziness, indescribable fatigue, stuttering and vision problems ruled my life. I got around my home by bouncing off walls and sliding down the stairs on my rump. My left arm and leg were numb, which made walking difficult, and probably dangerous. I had lost pretty much all sense of balance, and the bottoms of my feet always felt like someone was stabbing me with 100 very sharp needles. I navigated the grocery store in a courtesy electric cart. I had almost no strength in my hands or arms, and my coordination was shot. Sometimes I couldn’t even bring a fork to my mouth without dropping food, or missing my mouth entirely. My esophagus sometimes would spasm, making eating and drinking anything painful and difficult. I can’t even describe the feeling.I was unable to drive, I was unable to see well enough to read, and my vision changed so dramatically from day-to-day that glasses were pointless. My husband had to drive me everywhere, he read for me. On my good days I could read on the computer if I set the screen resolution to its biggest setting. On average days, I used a text to speech program. On bad days, I couldn’t make out what the text-to- speech program was saying. On those days, my husband read the screen to me. I managed to serve as technical editor for a colleague’s book by adjusting screen resolution large enough so I could see the page, and using my text-to-speech program, or having my husband read to me. Most days I was unable to use a keyboard, so I used a speech recognition program. Did you know those speech recognition programs have a very difficult time understanding a person who stutters?
My doctors told me that my Relapsing Remitting Multiple Sclerosis had changed to Secondary Progressive Multiple Sclerosis. They said there was nothing they could do except offer me drugs to ease the pain and calm the muscle spasms. My neurologist told me we should start doing nursing home interviews immediately. He believed I’d need full-time nursing care within 3 to 6 months.
I was devastated. Together my husband and I had six children,and they were all young. The oldest was barely 11, and the youngest was less than a year old. I had a lot of mothering and teaching to do. Plus, my step-children both had developmental delays and needed a strong mom in their lives. Their bio-mom had some serious medical problems of her own. She was (and still is) completely out of their lives.
I am a stubborn, determined woman. Sometimes those traits have worked against me, but most of the time my determination has worked well for me. And this was no different. I was not going to just roll over and give up my life.. the lives of my kids. I was not going to give up to this, or any other disease. I had a family to raise, dreams to fulfill and things to do.
I knew there HAD to be people out there who had beaten this thing called Multiple Sclerosis. So, I set out to find them. The Internet can be a wonderful tool. I did indeed, find people who were ignoring the advice of their doctors, refusing to roll over and give up –People who were actively and successfully fighting this autoimmune disease. I asked questions, I studied the immune system, and the nervous system. I became an expert on MY immune system and MY body chemistry. I changed my diet. I took herbs and vitamin supplements, I used energy work. I did physical exercises and meditations intended to strengthen my immune system. I used herbs and vitamins known restore nerve function and rebuild nerve tissue. I fired my team of doctors when they told me I was wasting my time.They wanted me to believe I could not recover. I ignored every single person who told me I should just give up and take the drugs the doctors were offering. Some of those people meant well.. they didn’t want to see me deal with the level of pain my body was in. They didn’t want to seem me struggle.
But.. in the end.. I did it. I regained my functioning, I STOPPED the progression of the disease. Today I run a business, I’ve had 2 technical books published since then. I have earned my Bachelor degree in Natural Health, I am a Reiki Master/Teacher, and a Master Herbalist. I homeschool 3 kids under the age of 13. I am active in the Society for Creative Anachronism— heck.. I put on armor and fight with rattan weapons. I’m not cleared to fight in wars or contests yet, but I’m getting there. I’m learning to shoot archery.
These activities have become common place for me again. I still have to remember that I have MS. I can’t let myself get run down. I have to know and be aware of my limits, but my limits have expanded greatly over the last 6 years.
And despite what my high-priced team of top neurologists had to say about the matter, I’m still walking, still talking, still doing everything without help…without a full-time nursing team.
That in itself is a big deal. It’s not that I take my good health and full functioning for granted, I don’t. But sometimes I forget how hard I had to fight for what I have. And sometimes I forget how rare it is, in today’s world, for a person to take their health in their own hands, and do what everybody says can’t be done.
I was reminded of all this from a conversations I had at fighter practice last Tuesday. I was feeling discouraged because it was too hot for me to get into armor. One of the fighters and I started talking and he heard my story for the first time. Something about his reaction to my story reminded me that what I’ve done is unique, and that even though my fighting skill are not progressing at the speed I would like, that it is still pretty darned cool that I’m out there to begin with. So..thanks, WT for reminding me just how far I really have come in the last 6 1/2 years.