Nothing in Common

For a lot of folks who get diagnosed with Multiple Sclerosis, life changes a lot. Not everyone and not always right away, but many do eventually get their life flipped around a bit. I am one of those people, who around 15 years or so post-diagnosis, ended up on disability, no longer able to work at the career I spent most of my life preparing for. Some people don’t end up on disability but still struggle to keep up with life. When everything becomes exhausting because of fatigue, it becomes difficult to function like everyone else. No matter what your specific situation, many people with a chronic illness like MS begin to feel like they have little in common with the people around them.

With most people

Generally, when people say they get along with someone or say they like a person, one of the common reasons is because they “have a lot in common”. Having MS can start to erode all the things you had in common with people. There’s a reason we like to say “you don’t get MS, until you get MS”, because it’s very hard to understand what life is like living with this disease. It’s hard to understand everything we live with, the pain, the fatigue, the cognitive issues, and all of the many, many symptoms that we can encounter. With so many of our symptoms being of the invisible variety, we often get dismissed (“oh, I’m tired too”), which really drives home the feelings of misunderstanding.

Buried Beneath MS: I’m Still Me

Multiple Sclerosis (MS) most often affects people in ways that are not easily visible to others. You can’t see our fatigue, you can’t see our poor vision, and you can’t see our pain (to name just a few examples).

The more visible MS symptoms

Sometimes, however, MS will manifest in ways that are visually obvious to those around us. Most commonly, the first symptoms of MS that are visually apparent to the untrained eye, have to do with things like poor balance and spasticity in the legs because those kinds of symptoms greatly affect how we walk and usually contribute to the need for a cane, walker, or arm crutches.

Visible mobility aids

Because of symptoms like these as well as weakness/paralysis (again, just naming a few) people with MS may also eventually end up using a wheelchair. Unfortunately, in today’s society, the average individual who sees someone using one of these mobility devices will probably think (maybe even subconsciously) that “something is wrong” with that person. At least that is what I personally think. “Wrong”, I hate that word, just the same as I hate the word “normal”, but that is a whole other thing. So far, we have touched on people who have MS but no obvious signs of physical disability and people who have MS but do have visible signs of physical disability.

Cognitive disability

But what about cognitive disability? You can’t see it from a distance or take a picture of it but you can often just tell that someone has it (“it” being some sort of cognitive disability/impairment). So I am not sure whether to consider this an invisible symptom or a visible symptom because it’s kind of a bit of both.

SPECIAL MESSAGE from Sue Ellen Dickinson

I want to talk to you for just a minute about something really important......and that is....
I need your help!

I've never asked for your help before, but I'm asking now......so please hear me out.

See......Heart Talk is totally listener and subscriber supported.

But, unfortunately, it costs money to put this program on the air, and bring it to you and many, many  others  all around the world, who enjoy listening to HEART TALK.....and I want to keep it that way.

So far, it's been just me  who's been paying the monthly bills to keep this program on the air..

I have no outside help, financial or otherwise to help me pay these bills, so it's all coming out of my own personal pocket.

But now, I've got to ask you a favor.  Oh.....you can relax.....I'm not asking for money.. .....and I won't EVER ask you for money .....because believe me, I understand where many of you are with your finances, and that's the last thing I'd ever ask of you.

But there IS something you can do for me that's not going to cost you a penny...., but it will help me tremendously.

Here's what I'm talking about.....

Hi, I Have MS…

Not many people other than close family and friends knows that “Calie” is not my birth name. My true first name is “Calissa”, but I’ve always gone by “Calie” for short. I despised my name growing up. “Calie” was what I was called since birth, so I never understood why my parents had to do something so terrible to me. Didn’t they know that the name “Calissa” was just plain weird?!

It was mortifying to me

Each new school year, I would make myself sick dreading the new teacher calling our names for attendance. I knew they would call “Calissa”, and I would have to tell her that I go by “Calie”, and it was mortifying to me that my peers would know the name I went by was short for something so (at the time) hideous. I seriously begged my parents on more than one occasion to let me go to the courthouse and legally change it to just “Calie”. But, I knew “Calissa” was the name I was given, and whether I hated it or not, I would always know it was my given name…even if I changed it on a piece of paper. Of course, once I graduated high school, I realized my name wasn’t so terrible after all. It was on all of my legal documents, so I decided to just embrace it. Eventually, people even started telling me they thought it was a beautiful name, so that helped too! It’s humorous now, thinking how much time I wasted worryingover a name that wasn’t all that bad to begin with. It’s unique, and it’s mine, so after years of finding it torturous and utterly repelling, I said, “to heck with it,” and decided “Calissa” was an ok name to have. Obviously, I still go by “Calie”- it’s what I’m used to- but when people call my real name I no longer hide my face in shame.

Hiding and denying my diagnosis

Your Shortcomings Can Be Your Superpowers

Warning: This may be a trigger post for some.

Negativity. Why it is so popular, I will never understand. I used to be a negative Nancy myself, so I do understand how it can swallow you whole. Of course, I’m human and still have negative thoughts, so I get it. I really do. Sometimes life is the pits, and life with MS can feel like an extra ton of negativity on your back. The extra negativity can unleash the Hulk in all of us from time to time. BUT, one thing I will never understand is why people choose to stay stuck there. I’ve found surrounding MS, and even in MS communities, negativity has run rampant. There’s negativity from others towards us, and then there’s the negativity that some after diagnosis can’t ever shake, and then unknowingly spew that onto others. It honestly saddens me on both ends. To live life only seeing negative aspects of every situation and to constantly be negative towards others makes life seem so hopeless.

The world can already be cruel

I for one, can’t let negativity get me down. I’ll be honest, from time to time it does, and I’m sad to say I sometimes allow it to affect me. However, I refuse to let other people’s miserable demeanors and outlooks shed any light on my views. Yep, MS stinks. It’s taken a huge toll on my life, and I’ve faced my demons because of it. I have determined though, after many years of dealing with this subject, that it doesn’t do any of us one bit of good. Not even a little bit. We are not stuck with negative mind-sets. In my opinion, bettering ourselves should always be a priority, and sometimes I think people forget that, including myself. This world can already be so harsh and cruel, what good does it do to add to that?