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.”

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.

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.

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.