Fearing the Future

Living with a highly unpredictable disease like Multiple Sclerosis can be an exercise in controlling your fears. Every day (and night), we can easily get consumed with worrying about or at least thinking about our future. With a disease that can change your life in the blink of an eye, these concerns are not unfounded. While it’s important to acknowledge and prepare for the future, we have to be careful not to let the fear of it consume us.

Legitimate fears

Let’s face it, MS is incredibly frightening. We never know when we won’t be able to walk, or see, or stand, or do any number of things that we always do. I have literally woken up and been unable to walk or use my legs due to an exacerbation. At this point in my career of MS, I know if something like that happens again, it might very well be permanent. It’s not easy to think that you might be working one day, but be unable to the very next (again, that’s actually happened to me). You might not only lose your mobility, senses, or ability to think, you may lose the chance to provide for yourself and your loved ones. That’s extremely terrifying, and it’s the kind of fear you can’t appreciate until you experience it.

The Blame Game: Yourself

Having a chronic illness like Multiple Sclerosis can seem extremely unfair. For many fighting this disease, there is a natural tendency to want to assign blame. I think we’ve probably all done it at some point. I know I sure have. Like many people who live with a disease like this, one of my primary targets when assigning blame is none other than myself. What did I do wrong? How did I cause this? I must deserve it. Even though I know better, I still find myself guilty of this. Which is why I’m here to remind both you and me, that when it comes to the blame game, you can’t look at yourself.

Was I unhealthy?

It’s easy to think back and try to figure out why this happened to us. One common train of thought for people is wondering if they weren’t being healthy enough, maybe not taking good enough care of their body. This isn’t one I worry about (I was in the best shape of my life when I was diagnosed), but it is extremely common among people that I talk to about this issue. Many people worry that they did something that caused MS, or rather, they didn’t do something to prevent it. Maybe if they’d exercised more or taken a different vitamin, then maybe they would never have gotten this disease. If you were extremely reckless with your body, like smoking, or were otherwise extremely unhealthy, perhaps then you’d have some traction in this argument. Even still, there are plenty of people that are in perfect health that eventually get diagnosed with Multiple Sclerosis. So chances are, you didn’t do anything to cause this and you couldn’t have done anything to prevent it. So stop blaming yourself.

My Sliding Scale Of Accomplishments

As we make our way through life, we come upon numerous successes that we are proud of. Whether we attained these goals through hard work or luck, or a mixture of both, they are still moments that we celebrate, moments that fill us with pride. The first time you ride a bike without training wheels, when you make the team, graduating, getting your first job, bringing home that first real paycheck, being promoted, getting married, having or adopting a child, I’m sure you know the moments I’m talking about. As I’m coming along nearly two decades of being diagnosed with Multiple Sclerosis, the type of accomplishments I’ve been having aren’t exactly the ones I expected to be having at this point in my life. I’m no less proud of them though, but that hasn’t always been easy for me.

A mountain for me

I started thinking about this a week or so ago when I came upon, what was to me, a pretty nice accomplishment. A local historical area near me had a traveling WWI exhibit that they were going to have on display for one week only. It may not come as a surprise, but my nerd-dom extends far beyond just loving LEGO; I’m also really into history. So this exhibit was something I really wanted to check out. I was also pretty adamant about going to see it by myself (I hate dragging people along to things they have zero interest in; I do it often, too). So, I set this goal to go to this thing, by myself. It may sound easy for most people, especially when the exhibit was only like five miles away, but for me, it was tough.

Identity Crisis

How do we view ourselves and what does that say to the outside world? Having a serious disease challenges our identity at every turn. For those of us with a chronic disease like multiple sclerosis with no known cure, the question of shifting identity can be challenging.

MS wasn’t going to change who I was

From the beginning days with my MS diagnosis, I was fairly confident in saying to others, “I have MS,” aligning myself with the profile of people who have relapsing-remitting multiple sclerosis (RRMS). There were treatment options, and from all I read, I could expect to live a fairly normal life outside of having MS. Having MS didn’t mean changing my life, and I could continue on the same path. MS wasn’t going to change who I was. Or at least that’s what I thought.

Reality set in

Then reality set in – living with MS began to peel away at my identity in small ways. I walked slower and eventually began using a cane for balance and safety. The everyday activities I once did became more difficult. No longer could I be in the summer sun tending to a garden or pulling weeds. Vacation times and locations became more focused on weather conditions and what the physical demands might be, rather than where I really want to travel to next.

Don’t Call Me Brave, I Didn’t Choose The Ill Life

“You’re such an inspiration!”, “You’re so brave”, “What a warrior you are!”, “I’m so proud of you!”, “You’re my hero!” These are just a sample of the types of comments that so many people with Multiple Sclerosis often get from other people. While they are exceptionally well-meaning and even appreciated, I think there are many in our situation that cringe at those phrases. The main reason it may give us pause, as we try not to make a face, is that it very much highlights the very thing that so many of us are trying hide: that we are different to you.

Who is brave?

When I think of bravery and inspirational people, I tend to think of people that chose a path when they could have avoided it. Like people who volunteered in WWII, or first responders who charge into an accident scene despite the danger to themselves, or even teachers (low pay and all those kids? Whew, that seems brave to me!). I know I never volunteered to get Multiple Sclerosis. Trust me, if I could give it up, I’m sure I would. There would be few situations where I’d probably choose to get an incurable disease. But, I have it, and like most of us with it, I survive. You really have no other choice, you can either go with it and do your best to thrive or give up and, I don’t know, not survive? I don’t know because people don’t really give up. We really aren’t given the chance to give up. That’s kind of my point: we aren’t really given a choice at all.

CAREGIVER PERSPECTIVE: UNEXPECTED SADNESS

I got hit by feelings of sadness unexpectedly today. Keeping my self out of my husband’s sight at all times, I had to work really hard to hide the fact I was very close to crying. Usually, I guard my emotions well, and rarely break down. However, I have one weakness that I can’t seem to guard against: music.

Fell in love with his singing

Lynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either.
Afraid of being hurt a second time, I kept up an emotional barrier until he wrote a song that he sang to me as part of his marriage proposal. I love his voice and to hear him sing as he plays his guitar or drums just melts my heart.

Struggling to Find a Purpose

Since I’ve been writing about my life with Multiple Sclerosis, I’ve covered a wide range of topics. Many of those will typically include pieces that discuss, not necessarily a specific symptom, but the changes and emotions I (or others) encounter because of living with MS. While symptoms like pain, fatigue, and cognitive function are extremely difficult to live with on their own, the collective effect that the disease has had on my life is sometimes the most difficult to deal with. One of these unfortunate effects that I struggle with, often on a daily basis, is trying to find my purpose in life.

Questions purpose in life

While not everyone with MS is on disability or forced to leave their career, there are many that are in just that situation. No longer able to work full time, struggling to fill their days. Additionally, many people may still work, but their bodies allow for little more than that. They are still making a living, but perpetually paying the MS Tax for it, leaving them with a tired life of only work. Whether the disease takes your livelihood or your social life, or both, it can create feelings of unfulfillment and lead us to question our purpose in this life. What’s a life when I’m not contributing and making a difference? What’s a life, if all it is is work?

When You’re Doing All You Can

“What about this? What about that? Have you heard about that other thing?” Our well-meaning friends, and sometimes even ourselves, are constantly looking for the answer to our chronic illness. Searching for that magical treatment that will fix us and let us live the lives we once lived. The not-always-welcome-truth of the matter though is that many of us are already doing everything we can to fight our disease. It’s not easy to accept that multiple sclerosis has no cure. It’s also not easy to accept that you may be doing everything you can and you’re still not back to your old self. Coming to terms with having an incurable illness is extremely difficult. Accepting that you are doing all you can doesn’t make you a quitter though, it allows you to begin to live.

Are you really doing everything?

I can’t talk about accepting your position until I emphasize that, maybe more than any other disease, multiple sclerosis requires you to do a tremendous amount of work. Are you seeing a knowledgeable enough doctor? Are you maintaining as healthy a diet as possible? Are you getting some form of exercise? Have you seen speech, occupational, and/or physical therapists? Are you taking care of your mental health? Treating multiple sclerosis requires much more than a great neurologist. Even if you are taking a disease-modifying medication and you haven’t had an exacerbation in a long time, you may still not be doing enough. There may still be room for improvement. There is a lot you can do to fight this disease, it really is a pain in the ass. I have to be blunt here: honestly, if you aren’t a little frustrated by the number of appointments and things you have to do to fight this disease, then you aren’t fighting it as best as you could be.

The Choice Is Mine… and Yours

“You and me not gonna wake up every morning and get what we want.”

A choice is necessary

I heard that notable line in a movie once. Though I cannot remember which movie it was, that one astute line still resonates within me. It is incredibly factual, most accurate and undoubtedly applicable in an array of situations that anyone can experience in a lifetime. There will be those wondrous days, whether fun-filled or just comfortably content or uneventful, that we awaken to and all is well until bidding goodnight; however, there are the mornings we arise and must face the ongoing or onset of various unfortunate happenstances or adversities. For instance, a troubled relationship, a child in some sort of crisis, loss of a loved one, financial woes, vehicular problems, poor health, involuntary job loss, and world calamities are only several examples of waking up to something we don’t want to encounter. Naturally, what anyone would want to awaken to every day are good days, good times. That’s not particularly realistic so a choice is necessary – succumb to the trials we are faced with or seek ways to manage and cope to live a fulfilling life in spite of them.

A whole new MonSter

I awakened on July 13, 2007 to receive a diagnosis of Multiple Sclerosis. Over the years and especially presently, I awaken to the daily challenges of living with a chronic, degenerative disease. Definitely unwanted. I learned early on that it was necessary to make a choice because there was now a whole new MonSter of an element to awaken to which didn’t replace any other trials, but instead added to them and it wasn’t going anywhere.

Gone In 60 Seconds: When We Suddenly Aren’t Well

In my many years of living with Multiple Sclerosis, there have been so many things I wish I could convey to the people around me that don’t live with the disease. One key concept that would be incredibly helpful for myself and others with the disease, is that we can go from feeling relatively fine one minute to being overcome by symptoms the next. The idea that symptoms can come on so suddenly, often coupled with the invisibility of said symptoms, can be difficult for our friends, family, and coworkers to accept. It’s a fact of life for many with MS and can lead to canceled plans, strained relationships, and excessive amounts of frustration.

How can the change happen so quickly?

One of the big reasons that symptoms can come on so quickly has to do with what we call triggers. I’ve explained triggers in more detail here. The basic concept though, is that there are conditions (like temperature change, noise, and stress) that have an impact on us in a short amount of time. When you have MS, the myelin sheath, which acts as a layer of insulation around our nerves, is damaged. That damage makes it hard for signals from our brain to get where they are supposed to go (either at all or sometimes it just delays them). Different conditions can make that damage suddenly more apparent.

Our brains have problems communicating with the body

You may be thinking, “well if that damage is already done, how is some outside condition causing problems so suddenly?” A good example is temperature. Those electrical signals traveling along the nerve are sped up and slowed down depending on the temperature. When the myelin is damaged, meaning there is less of an insulation layer, outside temperatures begin to have a greater effect on the speed at which those signals travel. While temperature is a common example, there are many conditions that can cause these signals to have difficulty going where they need to go. Essentially, our brains begin to have problems communicating with the rest of our body. With our brain controlling everything, that can be extremely problematic and issues can appear quite suddenly.

Perspective on Excessive Positivity

The community of people who suffer from Multiple Sclerosis grows every day. With that, the amount of people who try to take on the role of inspirational social media warriors grows with it. I feel like every time I open Facebook or Instagram, I see multiple people exclaiming how they “decided” to thrive with MS and not let it “have them”. I’m very happy that they are doing well, so far anyway, but just because they are “thriving” doesn’t mean those who are not haven’t been fighting just as hard, if not harder.

Positivity sells

Let’s face it, positivity sells. People want to be heroes and want to see heroes. Even the National MS Society’s social media seems like an unending stream of feel good stories. Again, great for those people, but there are other stories out there. For every wife that has stood by her man in sickness and health, there are those that haven’t. For all the MS patients that have just finished 5Ks, there are some who are in wheelchairs. I’m all for remaining positive, but when you see so many positive stories without really seeing the other side, it begins to diminish the effectiveness of those tales. Aside from that, it can begin to have a pretty negative effect on a lot of those people that are struggling.

DON'T JUDGE ME

In the past, I have experienced discrimination when I have had use my handicapped-parking pass. I’ve had people judge me for using the motorized scooter inside the store because I “look fine”.  I can’t even begin to tell you just how many times I’ve been judged, just because you can’t tell that something is wrong with me easily.

Being judged by others with MS

However, being judged by others that are living with Multiple Sclerosis has to be the worst type of judgment I’ve ever received. I’m sorry that you have a more progressive type of MS. I wish that I could take your pain away and that I could help ease your daily struggles. I guess that’s why I write at all, to help those that can’t get the words out share with their loved ones the truth about MS.

Imagine being told over and over again, “You’re so lucky, I’ve been in a wheelchair for so long, you appear to be doing just fine against MS.” Or… “I don’t think you are typical of MS’ers. I guess you can have MS without any real symptoms.” With that being said, I’m not trying to be rude to those who say these things, but I can tell you that they can be hurtful towards people like me that live with a chronic illness with mostly invisible symptoms.

The Key to Contentment

It’s that time of year again, Thanksgiving is behind us and Christmas is coming. In previous articles, I’ve talked about the stress of the holidays and how that affects our bodies, but this year I want to go a different route. This year I want to talk about contentment. It’s something I think is important not only when it comes to holiday gifts, but when it comes to our health and our lives as well. We don’t always get what we want, but finding contentment despite that is the key to real joy.

Contentment and joy

You may be wondering how on earth I can mention being content with multiple sclerosis. How can contentment find its way into the crippling fatigue, pain, cog-fog, numbness, and more? Let me first say that it took me a long time to find contentment in the midst of it all. But, finding contentment despite your circumstances is a beautiful thing. You see, if I always based my contentment on my circumstances, then the probability of me ever finding contentment would have been shockingly low. My contentment isn’t based on what’s going on around me at the moment though, it’s based on joy. I’ve found that being content brings me joy, and having joy helps me remain content. They go hand in hand.