Monday, December 3, 2018

Busy Being Sick



“He doesn’t work, he looks fine, I wonder what he does all day?” That’s a question I’m sure people have often asked or at least thought about me the past few years. I would probably wonder the same if I didn’t know me. Sometimes, I think the people that do know me wonder that as well. Honestly, as time passes, I’ve caught myself thinking that, too – What do I do? What have I been doing? Well, when I’ve thought about it, I’ve been busy being sick. Many people have a hard time understanding that having a chronic illness can actually be a full time job.

What if we just chill?

Recently when I had to, yet again, bail on plans, I had a friend say they’d come over and just chill with me on the couch instead… to which I said I couldn’t. I think they were perplexed and even a little offended that I said no to the offer. While there are times that might work out, the truth of the matter, is that when I cancel on something or say I can’t come out, I’m not just sitting at home laying on the couch watching TV like a grade schooler who stayed home sick for the day. There may be moments that are like that, but when I bail on plans or otherwise say I can’t come out, it’s not exactly that much of a picnic. Generally, wherever I am (bed or the couch), I’m likely struggling to get comfortable, moving from spot to spot. Alternating twisting and turning, sitting and standing, trying to somehow to get relief as pain and spasms shoot through my body.  If that’s not the case, I’m likely fatigued, which is not the same as tired. It literally becomes hard to move, hard to speak, hard to make it to the restroom or even change the channel. I may not have those issues the entire time, or I might, it’s unpredictable. Point is, I’m not exactly good company to others. I also feel pretty awkward with others seeing me like that.

Monday, November 26, 2018

Body Image


Body image. Almost everyone worries about how they look, it’s just human nature. But, in today’s society with perfection surrounding you on social media, it’s even easier to get caught up in being consumed with how you look. Having a disease like MS, where your body doesn’t always function the way it shouldand subsequently can affect the way you look, having a positive body image can prove difficult.

All I can see is everything negative


I began having pretty significant issues with my body image and self-esteem at the ripe old age of 12, so right around puberty. Pretty normal, right? I was just like any other preteen girl with low self-esteem until I was diagnosed with MS at 14 and those feelings amplified. I’ve never been a huge fan of what I’ve seen in the mirror. It doesn’t matter if I’ve been told I’m the most beautiful girl in the world that day – when I look in the mirror, 90 percent of the time I am unhappy with what I see. I feel like even on days that I’m feeling good and pretty confident that as soon as I look into the mirror it’s like a black fog comes and all I can see is everything negative about myself. And one day it clicked. I find that a lot of the negativity I feel towards my body image is attributed to MS.

Monday, November 12, 2018

The Lies vs. the Truth


MS likes to feed lies to me daily. And I know I can’t be the only one. So, today I wanted to remind you of the truth. Remind you to stop believing the lies that MS likes to whisper in our ears. These lies can manifest in our minds quickly, but it’s up to us to stop accepting them and to shoot them down.

Lie number one: You are not enough.

I feel this way a lot. I’m not good enough, not pretty enough, not smart enough, not strong enough. A big part of MS for me is that it affects my self-esteem. I look in the mirror, and I don’t like what I see. I don’t like the tremors that have caused me to want to hide in shame. I don’t like the lines and wrinkles from the worry and stress of what’s to come. I don’t like the dents in my stomach and upper thighs from years of injections. The list goes on. But, each day when I look in the mirror, and I am fed the lie “You are not enough,” I try to beat that thought down before it even reaches the surface completely. And, I tell myself these truths instead:

The truth: I AM enough

I am beautiful in my own way; I am smart, and heck yes, I am strong! My tremors are visible and embarrassing, but they WILL NOT define me. Those lines and wrinkles? Those dents from injections? They’re my battle scars. They show that for my young age, I’ve fought hard to get where I am today. They show that although I’ve been through some low times, I have fought my way back up, and I have had to endure pain to maximize my overall health.

Tuesday, November 6, 2018

SOME BENEFITS OF LIFE WITH MS



When it comes to thinking, and even writing, about life with Multiple Sclerosis, it’s incredibly easy to focus on the negatives. I know I personally cover a lot of unpleasant topics, not because I’m pessimistic, but because I feel they need to be talked about. I also feel that when someone else reads about what they are going through from someone who has experienced it, it can be comforting, and even a positive experience. All of that said, I think it’s important to remind myself, and others, that it isn’t all doom and gloom. That life with MS has had some positives for me, too.

Appreciation


Living with Multiple Sclerosis for so much of my life has really taught me to appreciate even the smallest parts of it. I really feel like I wouldn’t really appreciate life this much had I not had so much taken from me. There is just something about having your life so uprooted by something out of your control that helps you recognize and love the small things. Living with a condition that may make you wake up one morning unable to walk really makes you appreciate everything from a small breeze to a cold beer. I’m not sure I’d be as appreciative had I not had this disease (I certainly wasn’t before I got it), so that’s something I can be thankful for.

Monday, October 29, 2018

Target On My Back


Most of my symptoms are invisible. I do, however, have one symptom that likes to come out at the most inopportune times. This symptom is something that comes and goes. It’s something I’ve written about in the past as well. I’ve been so relieved that it has been pretty much nonexistent for the past 2 years, but it has resurfaced, and its back with a vengeance. This symptom is my tremor. It is my worst and most embarrassing symptom. The others are invisible and easy to hide. But, not this one. With my tremor, I feel like there is a target on my back saying, “Hey, look at what’s wrong with me today.” It’s the worst. Period.

Not your typical tremor

My tremor isn’t your typical tremor. It’s not just my hands. In fact, a lot of the time it’s not in my hands at all. Most of the time it’s my head. And, it’s not always a steady shake, sometimes it’s almost like a tick. My head will move back and forth or side to side. Any time that I’m stressed, anxious, or feeling overwhelmed my tremor shows itself. And every time it’s present, it’s all I can focus on. And, in my mind, I’m absolutely confident it’s all everyone around me can focus on too. In the past, my tremor was much more severe. But now it’s back, and while I’m thankful it’s not as severe this time, that doesn’t change the fact that it is still affecting me.

Monday, October 8, 2018

I’m Stronger Because of MS


You know what they say, “You never know how strong you really are until being strong is your only option.” That’s a saying I use a lot when it comes to living with Multiple Sclerosis.

Before I was diagnosed with MS, I felt like I was a strong individual and that I could take on anything… a bit cocky I’d admit. Then came the diagnosis of MS with a horrible flare and I was lost. I wasn’t strong, I was weak and devastated and depressed.

I didn’t know how to move on

It took me a bit; I had a period of time where I didn’t want to talk to anyone, didn’t want to do anything and I was pushing those closest to me away. I don’t think it’s because I didn’t WANT to move on, but it’s because I didn’t know HOW to.

Could I just go back to life before diagnosis?

Could I just go back to my ‘normal’ life of how I was before I got diagnosedand had a flare that left me with major hurdles I had to climb over? Would I ever even be able to walk again, talk correctly again, just be the Ashley that I had been again? It took a lot for me to just get out of bed, but I did. Day by day, I started to get that fight back in me, the will to keep going. Because let me tell you, I was in a VERY dark place after I was diagnosed. I was at a point where I didn’t know if I wanted to live the rest of my life like this.

Monday, September 24, 2018

My Cognitive Collapse



Glimpses. Occasionally, I see glimpses of the mind I once had, when things seem to be clicking again. These moments are reminders of a time (since passed) when my cognitive abilities were great enough to power me through advanced schooling and to excel at high levels of a technical career. I was extremely lucky to have the abilities that I had. Now, after years of battling with cognitive dysfunction because of Multiple Sclerosis, I only have rare moments when my brain feels like it’s hitting on all cylinders. Many people will talk about moments of “cog fog”, but it’s more than mere moments for me. While I do have times where my mind is foggier than normal, I also am very aware that it is almost never as sharp as it once was, except for those infrequent moments of crystal clarity that seem to come out of nowhere. Of the many symptoms I’ve experienced because of MS, my cognitive problems are the ones that trouble me the most.

It took time

I didn’t experience cognitive issues right away. It took about ten years with the disease for them to show up. Eventually, I had enough exacerbations that somewhere along the line, just the right areas of my brain were impacted. Even then, it wasn’t until my last really big exacerbation that I started having some exceptional difficulty. Those issues began taking their toll and started affecting my work. My cognitive problems are partially to blame for forcing me on to disability. Turns out that having your brain functioning properly is pretty important to being a software engineer. A career that I thought would be fine for MS, because I never knew that some of these cognitive problems were even a possibility with this disease. Not expecting these symptoms made their sudden onset incredibly disturbing to me. Did I actually have Alzheimer’s or some other condition? My doctor at the time (one of many, many I’ve had over the years) explained to me that these were legitimate symptoms of Multiple Sclerosis.

Tuesday, September 18, 2018

Oh, It’s Just an Excuse


Lately, it feels like every time I decline an invitation, or say I can’t do something (which by the way it KILLS me to say I can’t do something), or complain about not being able to go somewhere because of the heat, I’m being judged.

Not an excuse

I have even heard people chat about me when they didn’t know I was nearby or in hearing range, say that I’m just using my MS as an excuse. Think of this as a follow up to my article, Last Minute RSVP.
An excuse… let that sink in, I mean really sink in. They’re insinuating that the incurable disease that I suffer from on a daily basis I’m using as an excuse.

I would be honest

Now, the people that state these kinds of things don’t really know me, because they would know better than that. If I don’t want to do something or go somewhere, I’m just not going to go. I will tell you that I just don’t want to go, flat out. I know that most people respectfully decline a lot of things, but sometimes I’m just a bit too blunt, and my filter doesn’t work.
These people that make these comments aren’t even worthy of a response from me because they don’t matter in my life if they are going to be rude and disrespectful. But I have all of these people that also have MS that reach out to share with me things that happen to them and IT’S NOT OKAY.

Thursday, September 13, 2018

WHAT YOU DON'T SEE


“You don’t look sick” is a phrase that I think everyone fighting a battle with Multiple Sclerosis has heard at least once in their life.  Discussing how MS is an “invisible illness” is a common talking point among those who suffer from the disease.

I don’t look sick but I am suffering

Many use a cane, walker, or wheelchair, however, just as many do not, leaving few, if any, recognizable symptoms for those with untrained eyes.  In a world where people seem to only believe what they see (at least when it comes to illnesses), our struggle is often minimized or overlooked. I’ll be the first to admit, I don’t look sick, not one bit, but that doesn’t mean I’m not suffering.

If you could see it, would you understand my struggle?

I may look like you, but that doesn’t mean I am. I wish people could, for one day, see what they normally can’t. I wish they could see my struggles, just once. I wish just once they could glance below the facade I put up and see what they don’t often see.  Not for sympathy, but for understanding. Seeing what they don’t normally see might better explain some of my actions. Since they can’t, I thought I’d inform them of what they don’t see.

Tuesday, August 28, 2018

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.

Trouble moving


Throughout this mini heat wave, I noted numerous times that I had trouble moving. As the weather affected my damaged nerves that are used to control the movement of my arms and legs, I literally had trouble moving my limbs. Simply picking up a glass of water was a challenge for me. Any sort of movement was not only difficult, but draining. There were many times during the heat wave, even with the air conditioner blasting, where I simply laid on the couch, doing nothing. At one point, I made a note of “slug” because I apparently felt like a slug.

Tuesday, August 21, 2018

Independent, Dependent or… Helpless?


Recently, someone used the word ‘helpless’ when referring to me. I was taken aback. I actually had a ‘funny’ feeling about being termed or viewed as such. I often note that MS has heavily impacted my independence, but I have never associated my situation with helplessness. It prompted me to do a bit of research and self-reflection on the state of my situation, and the message I’m sending relative to it. Is being helpless the ‘vibe’ I’m giving subconsciously?

The word brought me pause

‘Independence’ is taking care of oneself. On the other hand, ‘dependent‘ means to be reliant on someone or something, and then there is ‘helpless,’ which is described as being unable to help oneself, weak or dependent, deprived of strength or power, incapacitated, and the Cambridge Dictionary even goes on to say “unable to do anything to help yourself or anyone else…” I suppose I’ve always known what these words mean, but didn’t understand until I actually read the dictionary why being coined as helpless brought me pause…

Tuesday, August 14, 2018

Finding That Passion

The changes that come while living with Multiple Sclerosis can be fast and furious or they can prod along slowly over decades. No matter how long it takes, there are a large number of those diagnosed whose lives have been completely uprooted, completely altered from what they expected. For many, the changes we experience can dramatically affect our happiness and our ability to socialize. We often feel like we’ve lost control of our lives. Depressionand feelings of isolation run rampant in the MS community. While I constantly battle these issues, I am often asked what helps me deal with the often sudden, unexpected, and constant upheaval that MS casts upon our lives. My number one advice, is to talk always to a professional, because proper mental health care is vital with this disease (you need more than a neurologist). The second thing I like to suggest is to find something to get into, something to be passionate about.

The need

As my body began to deteriorate more and more, I could no long engage in some of my favorite hobbies, namely playing hockey and running. When things got to the point that I ended up on disability, I also began to see my friends less and less; even now, I don’t get out as much as I should or would like. It’s incredibly rough to not be able to do any of the things you once did for fun. Having something that provides joy is essential in fighting this disease. Aside from fun, having an interest to escape to can be vital, particularly on the rough days. With our life circumstances changing so much, we need to be open to new interests. Finding a new, even unexpected interest, can be extremely helpful when trying to improve our lives. A hobby is one word for it, but I prefer the word passion. Finding the right passion can not only help you relieve the stress that can be deadly to us, but it can also help us get the social contact we require.

Monday, August 6, 2018

Expectations, Guilt, & Chronic Illness: What Being Single For a Year Taught Me


One of the most common issues that those with a chronic illness, like Multiple Sclerosis, encounter, is guilt. It could be feeling guilty because we cancel so much, or that we can’t be there for our children, or not being able to do common chores around the house. Guilt is a heavy feeling and it can have a dramatic impact on our health. I am finally starting to realize just how powerful an effect the constant feelings of guilt have had on my health. Hear me out – I’ve been single for over a year now, and as I look at my current life and reflect back to the days when I was married, I can see just how much worrying about “being the man of the house” had a huge effect on my health.

Great expectations

I’ve written a few times about how there are certain sociological expectations when you are in a relationship. Particularly when you enter the bond of marriage. These expectations can weigh on you. While some people believe things like “a man should take out the trash” and other antiquated gender-based role ideas, I know that basing such ideas on gender doesn’t always make sense and is more rooted in tradition than practicality. That doesn’t mean I didn’t occasionally succumb to that line of thinking though. When the society you are raised in values those ideals, it’s hard not to, no matter how enlighted you think you are. I know there are many men with MS that have a very hard time when they can’t be the one to go out and mow the lawn, just as there are many women with MS that struggle when they can’t, for example, make the family dinner.