Multiple Sclerosis Struggles- Part Two
(Part One- https://medium.com/@wendycheairs/multiple-sclerosis-struggles-part-one-94cd7dd591cd)
I wish I could say that finding out I had MS was simple and easy, but that would be a lie. I had probably been showing signs as early as 2012 but definitely within 2013. My epilepsy which I thought had gone basically dormant returned in waves, medicine was not helping and the frequent trips to the doctors to figure out.
In early 2014 the first massive attack occurred, it came when I was working part-time at a job I had before I turned to freelance editing. The urgent care seemed to go by in blurs along with what appeared to be most fo the day as I couldn’t function, walk, talk, and kept repeating everything. I thought I was picked up from work, taken to urgent care and then like an hour later was in the emergency room with some doctors saying its not a bleeding brain. Instead, this was all of an afternoon into the evening. I had no concept of time; no idea of what was happening other than something was wrong. They sent me home once I settled with many new appointments scheduled with blood work, MRI scan, CAT scan, and more. This took months, painful, annoying, and no answers for most of 2014. All the while my symptoms came and went, vision blurred, speech slurred, walking became a chore, the stairs up to my apartment became a shocking realization of I can or can’t make it up and down them. It was a trial I wouldn’t curse on anyone.
I saw several doctors, looking for a different explanation, different issues all while things changed from each day. Sometimes resting helped, sometimes I couldn’t sleep with the legs and body spasms. I had no idea what I would deal with when I woke up. The seizure and migraines nearly became a daily issue, with new drugs being introduced every few weeks while everyone waited to see would this cocktail work? Often the answer was a loud no.
I learned quickly that stress made things several times worse, nearly instantly. This was found through several reasonable means; work, friends, family, drama, and things that I didn’t realize at the time. I had to stop usually driving since I couldn’t even make a week without a seizure and worried my husband to the point where he was ready to take the damn keys from me. The last time I drove regularly, I got into a stupid argument since at the time I was barely able to control what I said, in a haze, I found myself on the road. Thankfully in slow traffic, barely moving, giving me time to clear my head, toss all my cookies, and made my way to my apartment with gratitude. I began to agree I had to be taken off the road. Even now I barely get to drive, occasionally across the street or short distances on my best days but overall driving seems to be out of the picture for me in general. (Gosh I miss driving.)
I think this is when reality came into full view, I scared myself, my husband, and pretty much most people I explained to about the situation later. Finally, though I was able to get through all these trials and tests, so many tests to get to see my neurologist when I was having a terrible day. I barely could walk, think, or function. We went through the standard test; follow the light which I couldn’t, hit the knee to have it kick, which you can fail and asking if the doctor missed is not as funny to ask him as I thought it was. Everything was terrible in that visit, which I guess helped the doctor out when reading the newest MRI to figure out it was MS for sure.
Some people ask, why did it take so long, can’t they make a test and figure it out? Nope, it is not that simple nor easy, there are a lot of other things my symptoms could be, and they had to go through the process to see which of the many things it could be. Once it came down to MS I thought I would be relived, they knew what was wrong and could fix it.
No, not that easy. It was time for managing the symptoms, get my brain back in as much order as possible, and start the new changes to my life. Some people take years to find out what was wrong, and I was lucky it only took about a year. The several MRI’s in one-year help show progression of the lesions which make my nerve endings stop working correctly.
I began to learn from this doctor to watch out for stress and about people not understanding me. As I said in the first part, I thought he was crazy, overdramatic. Once again, wrong.
First, each holiday in my family has always been a large, boisterous affair with lots of people, everything was going on wildly with food, fun, and a lot of drama as must large gatherings can be. The first one was difficult that year, but the second one I had a full-blown grand mal seizure at the dinner table with several in-fights happened. I couldn’t move, and during this time, I lost function in my left hand as the ulnar nerve had been damaged within my brain. I had urgent care, emergency room visit, and back to a new round with doctors as my medicine couldn’t control my issues. Even now, I still can’t use my pinkie on my left hand and have little sensation in parts of my left arm. I have found how to work around the problem, but it has lasted to the point it is probably permanent. (at this point I hardly think of it, it just looks weird typing with one finger straight out with the others mostly working. It took a bit to relearn typing with fewer digits.)
From there, I had to change how I handle a large group, stresses with drama so as not to lose the use of other body parts. It was an unpleasant lesson, but I did start changing things after the new year, and it changed everything. I started working on how to deal with stress better, diet changes, exercise changes, and how to deal with people. This is where I lost people I loved, gained people closer who I didn’t know cared so much and got closer to those that were awesome and stayed with me no matter what. It helped through the new rounds of tests, medicines that kept changing, and my life turned upside down.
Part Three: https://medium.com/@wendycheairs/multiple-sclerosis-struggles-part-three-c803e1713efe
