Disasters and MS

It’s never the wrong season to think about emergency preparedness and how that relates to living with a chronic condition like multiple sclerosis. I live in the greater Dayton, Ohio area, which experienced 15 tornadoes in a terror-filled Memorial Day night. As I was hunkered down in our basement hoping the storms would miss us, I was mentally thinking of all the things I might need to recover if our house were hit. Fortunately, we were missed, but it reminded again of the importance of planning and thinking ahead and not just waiting for the next emergency.

The Mind Games We Play

Living successfully with multiple sclerosis requires some effort on the part of the diagnosed. In order to thrive with this disease, you have to try to live as healthily as possible, search for the right treatment, get tests done, and generally try to adapt to the changes that life with a chronic illness thrusts upon you. Over my years living with the disease, I’ve found that one of the areas that requires the most effort is maintaining a decent state of mind. No, I’m not talking about trying to blindly and naively push a positive narrative onto myself. I’m talking about the little mind games I have to play in my head to keep myself going.

Pain Changes You

Editor’s note: Chronic pain can be one the most debilitating effects of MS. If you or someone you know is struggling, please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat, and the MSAA toll-free helpline (800-532-7667, extension 154) and online chat.

When I was first diagnosed with Multiple Sclerosis nearly two decades ago, I thought I knew a good bit about the disease and what it was capable of (I’d grown up with a grandfather who also suffered with the disease, so was more knowledgeable than most). Of the many varied potential symptoms that I knew were possible, one of the ones that I didn’t expect was pain. At the time, I’m pretty sure it wasn’t even considered a symptom of the disease. Science and medicine have now advanced enough to know what many people with the disease have long told them, that pain is a significant issue with MS. I’ve discussed pain in MS on many occasions; it’s a symptom that I deal with, to some extent, every single day. This article isn’t to cover all the specific types of pain or their causes, rather, this is about what living with chronic pain every day does to you (to me anyway). In short, pain changes you.

Thinking Compromised

My roommate walks through the living room and asks me if I want to join her and some friends for happy hour, however, I give no response. My eyes acknowledge her, but in her words “seem glazed over” and I sit there, speechless. Inside that head of mine, my thoughts are a jumble; I can’t quite understand what she’s getting at. Words are floating around in a mist, some of them hers, some of them mine, and part of me is trying to grab on to them, any of them, to respond. It’s not simply a matter of finding the right word (though that happens often enough); I’m having trouble stringing cohesive thoughts together. I’m not only unsure how to respond, but I’m also not even 100% sure what she is asking. I finally utter something unintelligible before grabbing her arm and getting out “rough”. Knowing me, she takes it to mean that I’m having a rough moment and gives me time. Moments like this are extremely common for me, lasting between a few minutes to the better part of a day. This type of cognitive dysfunction is not only disruptive to my life, but incredibly frightening.

By OK, I Mean Normal

When you live with a chronic illness like Multiple Sclerosis, you are bound to get the question “How are you doing?” more than the average person. You know, often with that tilted head and eyes that seem to be saying “you poor thing”. This is a social grace, most people don’t really want to hear the real answer. I usually give them the standard “OK”, but I’ve started to think about what I actually mean when I respond like that. By OK, I don’t mean I’m actually OK, I definitely don’t mean I’m “good”. What I actually mean, is that I am normal. Everything is status quo for me, which I suppose I could look at as “good”, but I don’t think they would consider it good if they actually knew the details. So, what do I actually mean when I say I’m OK? And why do I even care if it’s simply a social grace?

The Mask

Lately, I haven’t felt the greatest. My fatigue is more prominent, I’m having severe joint pain that makes it difficult to walk, and it’s making it hard to get things done. All of these things make me feel lazy and useless, even when I know I’m not. I know it’s just my MS giving me a run for my money. Yet, whenever someone sees me, they tell me how good I look. Most in the MS community know that as someone with an invisible illness, that is one of the most frustrating comments you can get. People mean well, but they have no idea the mask we’ve put on just to look so “great”.

Putting on a brave face

The other day I was walking (more like waddling in pain) with my mom, and as we approached, the door people I hadn’t seen in a while commented on how good I looked. Don’t get me wrong, it always feels nice to get compliments, but little did these people know how exhausting it had been to get up and get ready that morning. Little did they know that before I got to the door to go inside, I told my mom that I had to put on my brave face and pretend like it didn’t hurt to walk. I’m not even sure why I told her that; I just knew that I’m so used to others thinking that I look fine that I didn’t know how they would react seeing me on a particularly bad day.

People don’t see the effort needed to look okay

People don’t see what it took to get ready that day. They don’t see how hard it was to put on that full face of makeup and how I had to sit on the bed just to put on my shorts. They don’t realize that behind the mask of looking good comes so much effort and many choice words. Remarks about how we look can be difficult. On the one hand, you feel great to know people think you look good, but on the other hand, it’s hard to swallow when you know how you look on the outside and how you feel on the inside don’t match.

Looks can be misleading

I am thankful that I can go out without people realizing I’m having a typically bad day physically, but I hate the feeling that my looks may be misleading. I want people to know that despite this illness, I have a lot of good days, but I also don’t want to lie about the fact that I have bad days, too. We all do. It’s hard to know how to look fine on the outside but also let people know that realistically, I’m not always fine. There are many days when I am struggling and in pain, but most days doing what I love and being out and about with my loved ones trumps all. It’s not like we intentionally hide how we feel either; it’s just sometimes easier to keep pretending than to take the time and let others in on whatever it is you’re facing that day.

Encouraging others with invisible illnesses

We don’t have to hide around others with invisible illness though. It is a community of people who know exactly what that feels like. Invisible illness is so misunderstood and not talked about nearly enough. I know there are many others out there who know what it’s like to feel like they are wearing a mask, too. That is why it is important that as a community, we continue to advocate, educate, but mostly encourage one another. Genuine, heartfelt encouragement is a gift. It’s not just a gift we receive, but it’s the gift that we can give to each other. It sounds cheesy, but it truly is the gift that keeps giving when it’s done in a genuine manner. This is something we can all do. We all wear our masks. It may not be MS, it may be something entirely different. But, I do know we all put on a brave face from time to time. So, let’s be there for each other. It’s difficult enough being told you look great when you feel like you’re dying inside. Be there for someone today, and know you’re not alone.

XOXO,

Calie

For Friends & Family: Your Friend’s Aunt’s Cousin’s Gardener’s MS

So you find out one of your friends, family members, coworkers, or acquaintances has been diagnosed with Multiple Sclerosis. It’s not a common disease, so your mind immediately searches for what you know about it and comes across a great factoid to share! Yep, you know someone else who has the illness! Your best friend’s aunt’s cousin’s gardener has it! Not only do they have the disease, but they’re also doing really well with it, too! I get it, it’s your way of trying to connect to us, it’s natural. As instinctive as it is to mention this connection, I want to clue you into a few things before you bring it up.

For Our Family & Friends: MS, Heat & Humidity

When I think about my life with Multiple Sclerosis, I often consider how much easier my life would be if there was a greater breadth of knowledge about the disease amongst everyone around me. If people knew a bit more about the disease, life would be better, not only for myself, but for my friends, family, and coworkers as well. A little bit of knowledge can go a long way. With that in mind, I’ve endeavored to create a few articles with some basic information about the disease and how it affects us. My hope being that these can be shared with our family and friends to allow them to better understand what’s going on with us. As I’m writing this first one in the middle of a crushing summer heatwave, I’ve decided to focus this first piece on the effects of temperature and MS.

The Bummer of Back to Back Days

Well, it’s here, the summer season has finally sprung (much to the chagrin of many people who have multiple sclerosis). With this season often comes vacations, day trips, BBQs, and all sorts of social activities and responsibilities.  No, this actually isn’t about the difficulties we face during the warmer tempsthat accompany this season.  While I want our friends and family to understand what temperature changes can do to us, I want to talk about another issue that tends to rear its ugly head this time of year. I’m talking about the difficulties we can experience when trying to do something on back-to-back days.

Not Being Heard

I have been writing about my many experiences with multiple sclerosis (MS) for years, and one thing people have told me from time to time is, “This is exactly how I feel! I’m sharing this with my family! You’ve put what I’m experiencing into words!” Many people with MS have a hard time describing what they’re experiencing to loved ones which is totally understandable because it’s definitely not easy to translate the chaos MS can cause into words that people can easily understand. In fact, many times, I struggle to put what I’m experiencing into words that make sense even to me, and I’m the one actually feeling what I feel! So how could I expect someone else to get it? It’s incredibly frustrating to not be able to explain to someone how MS is affecting you and even worse is when you start to feel like people just think you’re making stuff up, you’re crazy, or you’re just overexaggerating things that everyone deals with.

Trying to explain MS symptoms

When I was little, I used to have this nightmare about, let’s call it a monster, that was trying to get me. I would be in a room alone with it, and the door would be open, allowing me to hear everyone talking in the next room down the hall. I would yell and cry for help because the monster was right there creeping closer and closer towards me. The thing was, despite me shouting at the top of my lungs, no sound would come out. No one could hear my cries for help. No one could hear me. The feeling of helplessness and of no one being able to hear me that consumed me during this dream? That’s the feeling I get when I’m trying to explain an MS symptom to someone, but I just can’t seem to make them understand what I’m dealing with. From my perspective, what I’m experiencing seems super obvious, but no matter how I try to describe it, I don’t feel heard. They don’t get it. They don’t hear me.

Sick and Tired of Being Sick and Tired

As I write this, we are in the midst of some warm days, temps in the 80’s with high humidity. You know, the exact kind of conditions that can make having Multiple Sclerosis a living hell. There are plenty of articles out there about the effects of temperature on those with MS, so that’s not really what I’m discussing here. In fact, temperature change is just one of many triggers that can adversely affect those with this disease. Rather, I want to talk about one of the net results of days like this, namely the frustration it causes. When I have a string of rough days, whether it be because of heat, or stress, or any number of situations that can worsen my symptoms, I get absolutely fed up! There are many times where I put on a brave face and carry on like nothing is all that bad, but the reality is that I am sick and tired of being sick and tired.

Not to complain, but…

If you are at all like me, then you likely hate the idea of people thinking you are complaining. After all, everyone has something to complain about and no one is as special as they likely perceive themselves. I certainly come from an ethic of “just put your head down and carry on”. It’s a feeling that I constantly battle when trying to write about this disease. The last thing I ever want is for people to think that I’m complaining. At the same time though, I hope that pieces that I write allow others to say, even if just to themselves, “OK, this guy understands, he has the same problems”. I hope that reading what I write helps assuage the b*tching that others desperately want to, but can’t, do. So please allow me to take off my happy face for a few moments and indulge in some frustration.

Failure to Communicate

The Captain in Cool Hand Luke famously said, “What we’ve got here is a failure to communicate.” Lately, I feel like that quote has taken on new meaning in my life with MS. I’ve actually sent videos of it to friends as I reach out to them after a long period of time. I’ve gotten so incredibly bad at not only communicating with people but keeping those lines of communication going. When I finally get back to friends (and family), I like to emphasize the end of the Captain’s quote too, “I don’t like it any more than you, men.” While the circumstances differ than they did in the movie, it’s a fun way for me to admit that I’ve become terrible at keeping in touch and that it isn’t at all intentional.

Brain fog and memory problems

Maybe I’m just a bad person and that’s why I can’t seem to get back to people, but I don’t really think that’s all there is to it. Rather, I have some MS symptoms that plague me and make it much more difficult to maintain communication with friends and family. One of the prime symptoms that causes me problems is that of cognitive dysfunction. People love to use the term brain fog, but it’s so much more than that. Yes, I get foggy, but I also have a tremendous amount of memory problems. Making lists and reminders is absolutely critical to me. If something comes along and distracts me from that, then it can be hopeless for me to get back to someone. I may even think of the person, may even think about how it’d be nice to talk to them, but my mixed up brain may not associate that with actually reaching out and doing it. That’s a tough thing to understand unless you’ve actually gone through it, but it’s a very real issue.

What I Really Mean When I Say ‘I’m Tired’

I was talking to a friend last night, and when she asked me how I was, I answered with my usual reply; “I’m good, just really tired.” It made me realize how often I say that. I mean, it’s my usual reply for when anyone asks me how I’m doing. It’s my everyday life, this whole being tired thing. It’s become something I say without even thinking, because it’s just always looming there in the back of my mind. It’s not a matter of lack of sleep, laziness or anything of that sort. I try to do everything in my power to stay ahead of it, but one false move and it takes me down. HARD. While reading the other night, I came across this quote, and it explained the fatigue so accurately for me; “The only thing she consistently felt was the exhaustion. It was like a weight in the center of her bones, pulling down on her. The heaviness consumed her.”

Fatigue has been my biggest demon

Fatigue has been my biggest demon since being diagnosed in 2004. And, one of the most difficult things for me to explain to others is my level of fatigue. I know others relate to this miserable feeling, and I understand the frustration of telling someone you’re exhausted. I feel my friends and loved ones do their best to understand, but its not one of those things you can just easily explain. Most days when people ask how I feel, I want to just blurt out, “Oh I feel like I’ve been hit by a dump truck, have the worst hangover of my life, and have the flu. And all of those things are simultaneously fighting against each other, making my mind and body feel like a complete wreck”, but since that seems a little intense, I just simply reply with “I’m good, but I’m tired today.”

Anything Worth Doing, Is Worth Doing Poorly

When you live with a chronic illness like multiple sclerosis the way you approach many aspects of life begins to change. I recently stumbled upon a really great expression that demonstrates this, one that my gut reaction to was, “No, no way,” until I really began to think about it. It goes like this: “Anything worth doing, is worth doing poorly.” I’m sure many of you are just as shocked as I was when I first read it. At first glance, it’s so counterintuitive to everything I’ve ever believed. Allow me a chance to explain it though, because adopting this mantra has been very beneficial to me.

Say what?

Yes, like many of you, I am very much aware of the idea that “anything worth doing, is worth doing well.” Basically meaning, if you are going to do something, you should give it your all, you should do the very best you can and really put forth a thorough effort. It’s really a slogan I have always tried to live out as best as I could, putting forth considerable effort into anything I undertook. Whether it be my studies, my career, or even a recreational adult kickball league (yes, they have those), I would give my very best. To say I was a competitive person in my youth would be a grand understatement. So to hear what sounds like the inverse of a motto that I lived by really gave me pause. I thought it made no sense. If something is worth any bit of your time, surely it’s worth all of your effort, or else why undertake it at all?

The Importance of an Invitation

For many people battling a chronic illness, like Multiple Sclerosis, social opportunities become increasingly difficult to attend. This can become especially problematic in the warmer months, as many of those with MS suffer from some form of heat intolerance or during the holidays, when large gatherings and travel prove problematic. Friends and family begin to realize that we either have to cancel our plans at the last minute or simply outright decline many of the invitations we get. Eventually, as we are forced to continually be unable to attend functions, the invitations can start drying up. This can be disastrous for someone with a chronic illness.

Attending isn’t easy

No one feels worse about not leaving the house than us. Trust me when I say I wish I could be at every single event my friends and family have. I even crave it because I can attend so rarely. When your body forces you out of action so much, even attending events that would previously seem annoying becomes a coveted activity. I’m sure there are many times where it feels like we are simply “blowing you off,” like we aren’t interested and we are making excuses. I assure you that is not the case. If I say something and it sounds like an excuse, that’s only because I’m embarrassed to, once again, explain that my body is failing me. That some symptoms suddenly increased, maybe even because I was excited to be joining you (“happy stress” can be difficult for us, too). Let’s face it, anytime you have to constantly give the reason behind anything negative, you begin to feel like it’s unbelievable.

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).

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.

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

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.

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.”