Monday, June 10, 2019

ONE MORE THING


When I think about my day-to-day life with Multiple Sclerosis, there is one phrase that I think comes to mind constantly: “One more thing” (often times, that sentiment is preceded by an “ugh”). It’s a phrase that seems to perfectly sum up the frustration that my disease constantly springs upon me. Whether it is having to add a new medication, or having a new symptom, or just any MS-related problem that comes along, it always feels like it’s already adding to a mountain of other things. One more straw to see if the camel’s back will finally break (and there are many moments when I feel certain it will).

There’s always something else

“One more thing” is a phrase that relates to nearly every aspect of my disease. Talking with the doctor and ready to try a new medication? Great, just one more thing to try. Having a rough day already where you’re fatigued and can barely walk, then dropping a glass, shattering it and spilling the contents? Yep, one more thing to add to the day’s disasters. Experiencing a new symptom, like blurry vision, for the first time after years of living with the disease? Yep, one more way MS is affecting you (reminder: new symptoms should always be told to your doctor).

Tuesday, May 21, 2019

Learn to Let It Go


I love music and there are more than a handful of songs I feel like I can relate to, especially when it comes to MS. There is one in particular though that just hits me harder than others. It’s not by an artist I listen to super often, but her words really resonate with me and my MS story. The song is called, Learn To Let It Go, and it’s by Kesha.

MS held me as a prisoner for too long

Every single one of the lyrics, which I’ve posted below, are incredibly relatable. I was diagnosed with Multiple Sclerosis as a teenager and it held me as a prisoner for far too long. It caused many years of bitterness. For too long I wore a “mask”, not letting anyone know what was going on behind my fake grin. I kept hiding, too, until one day it was all too much, and I broke down. One day I snapped, and it took a long time for me to turn my life back around! As Kesha says in the song, my s**t hit the fan. But, as I’ve learned along the way, you don’t have to to be a victim. This life isn’t fair, life with MS isn’t fair, but just because I’ve been dealt this card in life doesn’t mean I’m going to live any differently.

Monday, May 13, 2019

It’s My Choice



I’ve learned since my diagnosis that there are a lot of people who like to voice their opinions on what I can and cannot do… and all I can really say is, it’s my choice…

I get to choose how I want to live my life with this disease. I love others input, but that’s all it is… someone’s opinion… I will take it in and acknowledge it and appreciate those who care enough to voice their opinion.

However, it’s my choice in the end. It’s my body, my illness, and my decision.

Have you ever felt “pressured” into a decision, not just with something to do with your MS, but life in general? Being pressured into making a decision is NOT a good feeling and it leaves doubts in your head, and at times regrets.

While there is great advice out there, we must make the right decision for OURSELVES!

Our decisions when it comes to MS, may take time to make… we have a lot to think about, because it does concern not only our future, but also our health. These types of decisions are not easily made.
So, if someone gives me his or her advice, more than once… it annoys me. Just because I haven’t made a choice yet, doesn’t mean I have disregarded the advice or anything like that, but our decisions with MS cannot be a spur of the moment type of thing. It’s not like… “Hey how about we have pizza for dinner?” and you respond within a minute with a “yes” or “no”…

I mean it’s already difficult making a decision that has to do with your MS, but if you factor in the cognitive issues (if you have the “pleasure” of that symptom) … it takes us a long time to really think on what we want to do.

So I guess what I’m trying to say is don’t feel like you have to rush in to decisions… or do something because others feel it’s the right decision for you…

It’s your body… It’s your mind… It’s your choice.

xoxo
Ashley Ringstaff

Monday, May 6, 2019

When Hope Is Not Enough


I was diagnosed with primary progressive multiple sclerosis in 2001, purchased my first wheelchair in 2008, and by 2016, I could best be described as a quadriplegic. I’m in rough shape.

The issue of my worsening disability rarely comes up in polite conversation. On those occasions when it does, well-intentioned people, restrained by propriety, offer sentiments like, “One day they’ll find a cure, Mitch. Don’t give up hope.”

I need something more than hope

Hope. It is a concept no less hallowed than peace, love, or faith. I don’t question anyone’s sincerity when they prescribe it for me. Because I suffer from a chronic, incurable disease, however, I find hope routinely over-promises and under-delivers. Hope is not enough. I need something more, and I’ve found it.

Tuesday, April 30, 2019

Caregiver Perspective: Compassion Fatigue


t seems ironic, but did you know that caring too much could actually harm you? There’s a fancy name for it called “compassion fatigue.” While compassion fatigue and burnout seem similar, they have significant differences.

Caregiver burnout occurs over a long time

  • Characterized by extreme exhaustion
  • High levels of anxiety
  • Depression
  • Weight gain
  • Isolation from friends, family, all personal relationships
  • Increase in addictions (caffeine, food, alcohol, drugs, pornography, etc.)
  • Increase in medical issues such as heart disease, high cholesterol, type 2 diabetes, stroke
  • Lowers immune response to illnesses
  • When the individual has had enough one day, they leave and never look back
Burnout usually occurs after years of pent up frustration and stuffing emotions and anger away, until the feelings burn out and no longer exist. The emotions and the desire to remain in the role go up in smoke; they “burn out.”

Monday, April 22, 2019

When You’re Fighting Alone


Living with a disease like Multiple Sclerosis can be a difficult task, particularly as you grow older. Having a good support system is crucial to living successfully with this illness. Not everyone has that though, and for some people, like myself, even having a good support system doesn’t mean we don’t sometimes feel like we are fighting this battle alone. I talk with a lot of people with MS, and I am often left with the thought that I have an interesting perspective as someone who has had the disease this long, is this age, and is single. With no family of my own and a career taken by my disease, I find that I face some struggles in ways that others don’t. So, I’m here to share, primarily because there are others like me, and no matter how minor we are in the grand scheme of MS demographics, you need to hear that you aren’t alone.

Making a lonely disease even more lonely

As I write this, I am 41 years old, I have had MS for close to two decades, I am single, unable to work, and have no children (though I very much treat my dogas my child). It can be argued that Multiple Sclerosis played a pretty big part in my current situation, but that’s not the discussion point here. Rather, I wish to discuss the difficulties that come with all of this. There are many times during which this combination of life statuses can weigh on me. In short, it can make a lonely disease seem even more lonely. It can also really make one feel like giving up and like there is nothing worth fighting for. I feel like I constantly have to manufacture extra motivation to keep on keeping on and to do the things I need to do to keep this disease at bay.

Monday, April 8, 2019

When The Weather Makes Life Rough


The summer can be a rough time for folks with MS. I know I’ve written extensively about how increased temperatures and humidity can have an adverse effect on those who suffer from the disease. We recently went through an intense period of hot temps and near 100% humidity where I live in the far southern tip of Delaware along the Atlantic Ocean (and yes, I live just miles from the beach, but seldom enjoy it in the summer because of the weather). During this stretch of time, I took some notes about how the weather affected me. I thought I’d share some of my observations. This may not be helpful for those who already have MS, but might be good examples to share with friends and family to explain what warmer weather can feel like, for at least one person who has MS.

The abrupt change in weather

On the first day of the warmer and more humid weather, my notes really focused and blamed the abrupt change in weather. It had gone from low-70s to mid 80s but also included a massive increase in humidity. The humidity increase seemed to come first, and while air conditioners are very helpful when the temps are high, they don’t usually kick in if the humidity is high but the temps haven’t increased. Regardless of what changed first, the fact that the change happened quickly, overnight, was a shock to my body, leaving me with increased fatigue and cog fog. I noted in that same entry that it was taking me longer than average to do things, basic things, like work the remote control and I can tell (lots of “colorful” language) that this left me feeling very frustrated.

Monday, April 1, 2019

MS & Fear of the Unknown


I was diagnosed with multiple sclerosis (MS) almost 9 years ago, and as many people will tell you, being diagnosed with a chronic disease can be rather scary. Even now, all this time later, and after all that I’ve been through, I can still remember a lot of the details of that day pretty clearly, including how I felt and what I was thinking. While everyone might give you a different reason for why being diagnosed with MS was scary to them, I would argue that a lot (but definitely not all) of the fear that comes with a diagnosis like this are probably all the same thing just hiding under different disguises. People naturally fear the unknown, and considering the fact that most people don’t know too much about MS when they receive the news that they have it, I would say it’s safe to assume that their diagnosis came with a lot of fear. In that one moment in time at the doctor’s office, there was so much that I realized I didn’t know, so many questions that I now had! My mind was instantly flooded with an ocean of unknowns.

Why are people afraid of the dark?

Most of us (whether we have a chronic illness or not) can all relate to this concept of “unknowns” causing fear through the simple fear of the dark, even if we only ever experienced it as a child. I mean, let’s be real here, the dark was scary, right? Why though, would anyone be afraid of the dark? The mere absence of light? Well, that’s a dumb question, everyone knows the answer to that! Monsters, of course! The dark is scary because that’s where monsters hide! “Calm down, there aren’t any monsters hiding in the dark,” an adult most likely assured you, but that didn’t really change anything, did it? Why not? Because you didn’t know for sure that there were no monsters. You still had no idea what was actually in the dark despite what the all-knowing adult was assuring you. Darkness is probably the best representation of “the unknown” that I could ever think of. People are afraid the dark because they don’t know what’s in it. People are afraid of the unknown.

Tuesday, March 26, 2019

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.

Monday, March 18, 2019

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.

Tuesday, March 12, 2019

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.

Tuesday, March 5, 2019

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.

Monday, February 25, 2019

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.