Four years ago today, I heard the words “We’ve ruled out everything else. You DO have MS.” I had been having tests done since July of that year when I started experiencing weird symptoms, and two days before that day I had been admitted to the hospital with a whole bucket full of symptoms that were weird and scary. They started while I was participating in an off-site meeting for my job, and one of my bosses actually thought I had been drinking when she saw me stumble and have difficulty walking in the rest room. During the course of that meeting I felt the room sliding sideways, felt like sparks were shooting out of me (picture my hair standing on end with it on fire. Hahaha…great visual, huh?), I was having difficulty understanding and communicating, and the balance issues got worse. I had had a lumbar puncture the week before, and since my back was also hurting I was thinking maybe I had an infection. An MS flare up never crossed my mind. After the meeting and lunch with my co-workers I drove myself to the emergency room, and every doctor that saw me that day asked how long I had had MS. I had no idea that day that I was experiencing so many of the “classic” symptoms of a bad flare. I had no idea how much I had to learn on that day.
When the symptoms started in July they came and went and were just random things, but something just felt WRONG. My chiropractor at the time suggested that I call my primary doc and have a brain MRI to rule out a recurrence of the breast cancer that I had been diagnosed with and treated for in 1994. SCARY thought! So…the first MRI came back showing multiple lesions indicative of MS according to the report. MS, like most autoimmune conditions, is tricky. It mimics other conditions. It hides out, waiting to ambush you at random moments. It is very inconsistent. No two people have the same symptoms, and even in one person it is unpredictable and ever changing. Brain lesions can be caused by all sorts of things, even something as “normal” as sleep deprivation, so that was just the first test of many.
The first neurologist told me that I was 52 years old and fat, therefore I must have sleep apnea. He made this diagnosis while refusing to look at the scan or the report. No shit Sherlock….if he had taken the time to read my records he would have seen that I had been treated for it for years. NEXT! The next neurologist was amazing. He took the time to listen to me and to read EVERYTHING. He asked for medical records for as far back as I could give him. He did test after test after test, and was not giving up until he found the answer. Some were as simple as sleep studies and blood tests, and others hurt like hell and I never want to have them again. They were all pieces of the puzzle. He learned that I DIDN’T have the rare form of arthritis that I had been diagnosed with in the 1980s and had been treated for since then. There was no definitive lab test for it back then, but there is now. After going through all the records he was able to pinpoint when the MS probably started (in the 1980s), and episodes of really bad flares, but nobody could figure it out. That is not unusual for this sneaky condition. There were times that I felt better, and times that I felt horrible, but nobody could figure out why. Some of the symptoms and treatments paralleled those for MS, but also many other conditions, including the arthritis, so there was no reason to go looking further at the time. It was hard to get family and friends to understand that I really was sick. They thought I was being lazy or was depressed. It happened so often that I started to believe them. Then I really DID get depressed!
So…fast forward to today. Wow what a ride it has been! Getting the right medication cocktail, trying to learn how to deal with the various symptoms and still have a normal life, how to explain to people that I know that even though I don’t look sick but I really am. My plan was simple. Take care of my health, stay active, keep working, and pretend it didn’t exist. I felt grateful that I wasn’t sicker than I was. So many others are. But we plan and God laughs, right? I had to finally give in and give up my job in August of last year. I still can’t get used to this “retired” life. I try to take care of my health. I educate myself and work very well with my healthcare team. But sometimes MS thinks it is the boss and starts pushing me around. It has affected almost every aspect of my life.
It has affected relationships….there are still family members that don’t believe that I have MS….there are family members that think that if I do have it then I am not safe to be around their children….there are family members that think that because I can no longer work I shouldn’t be able to leave my house. After all, if I can travel then I can work, right? EVERY time I travel to New Hampshire to visit my family I end up with a bad flare up and in the hospital very quickly after returning home. There are friends that get mad because I often have to cancel plans because I’m not feeling well enough to go out. I’m not as much fun anymore.
It has affected my self esteem. I don’t feel good about not working when my parents, who are 80 and 74, are still working 7 days a week. I didn’t want this to affect my ability to work. I had a great job that I really liked. I was financially secure because of it. This is very different, and I am still not used to it.
It has affected where I live. I gave up my big fixer upper house that I loved and moved into a very small apartment because I could no longer keep up with much of any of it. Even simple every day tasks are difficult much of the time. Laundry without laundry facilities inside my apartment is a pain (literally) when I have to go back and forth a number of times to the laundry area. Grocery shopping is really hard. Between the walking, and being totally overwhelmed mentally when I walk through the door of the grocery store and see the huge array of items on the shelves (a flare up a few years ago affected the area of my brain that controls that sort of thing), it is something that I dread when I have to do it. Cleaning wears me out and I have to stop and rest so often that a simple task could take hours. I found a wonderful woman named Dani who does those things for me when I can’t. She has become a great friend and I am blessed to have found her. I have good friends that check on me if they don’t hear from me, and I know I can call them anytime. And they get it. They know it’s real, they know when I do too much and have threatened to sit on me if that’s what it takes to stop me from overdoing it, and they know when they need to let me do it even though they know what the end result will be. They get me.
It has affected my health in so many ways. I was told a year ago that I was going to lose my eyesight. For someone that has been an avid reader since the day I could read that was NOT what I wanted to hear. Between bouts of optic neuritis and cataracts that developed from the steroid treatments I was quickly losing my vision. The day I found that out last year I booked a dream vacation to New Zealand and Sydney, Australia, so that I could go while I could still see. I recently had cataract surgery on both eyes so the vision has improved, but the loss still could happen due to the bouts of optic neuritis that I frequently get during flare ups. It has affected my ability to walk distances. I can walk, but more than a few minutes or a short distance causes lots of pain and breathing difficulty. I finally gave in and looked for a mobility device while I was in the hospital in August. A wonderful couple that lives around the corner from me had a used Hoveround that they got in a house that they bought to flip, so they gave it to me. Two new batteries later and have Hoveround will travel! For the first time in several years I am able to go to places like Ikea and the occasional theme park visit again. There are days that it affects my ability to walk or drive due to vertigo. Everything spins, so I just close my eyes and pretend I’m on a theme park ride. A very spinny one! That said, doing those things can wipe me out for days. I get so exhausted that I feel like someone dumped a load of cement on me and I am slogging through it as it hardens. Sometimes just getting out of bed makes me feel that way. If I had a nickel for every time someone said “So, I get tired too. Everyone does.”. Yes…everyone does…and I wish that was the kind of tired that I get but wishing doesn’t change it. I have developed leaky heart valves from the medications so the cocktail has had to change again. That’s always fun. NOT! So far so good there. Right now it’s watch and wait. And take more meds. Ugh. LOL
The flare ups come and go. Things go numb and don’t work, muscles spasm and ache, I lose vision or hearing, or my feet dangle and don’t work. I go to Hotel Largo Medical Center for a “tune-up”, and we start over. I get great care there, they know me, and I know that as much as I hate going, it is the best thing for me when it happens. Have I mentioned that I have craptacular veins and IVs really suck?
So now we are at the reason for the name of this blog. (It’s about time, right?) No matter how I feel it’s just a day. It’s a day!! Not everyone gets today, and I am grateful for every one of them. So it’s just a day in Dawn’s world. Please understand that all that above is not a complaint. It is just the facts of the days in my life. Hopefully it will help people to understand the things that happen to their friends and loved ones that have MS. You can’t see it, you can’t feel it unless you have it. But you can be empathetic and understanding. You can let us do our best to be independent, and know that if we ask for help we really need it. You can let us handle our day in the way we learn is the best because it IS something that we have to learn by experience. You can accept us just the way we are, because we are still who we were before MS. We’ve just gotten better at funny walks and worse at telling jokes because we probably can’t remember the punchlines.
MS has been shoving me around this week and is pissing me off. Just a day in Dawn’s world!! 😉