MS and Temperatures Pt. 5

Problems with warm temperatures don’t necessarily mean that the winter is any easier.  Cold can be as debilitating as warm. Plus, I find that the winter time can sometimes be worse, because many places jack up the heat.  At least in the summer, if I am indoors, most places are trying to keep it cool.

I work hard to stay the right temperature.  Many MS patients have cooling gear, from vests to headbands. That all can be pretty expensive.  I actually put wet sponges in the freezer to act as ice packs. They can easily go on my neck, joints, or feet...I have even placed one in my pocket when I go out to help keep cool.

A final example to help demonstrate what warm temps can do to me...  Many years back, if a person was suspected of having MS, doctors would use the “hot bath” test to diagnose them. Basically, they’d have a person sit in a hot tub of water and if they started to experience neurological problems, then they’d accept that as evidence that they had Multiple Sclerosis (this makes the dreaded MRI seem nice in comparison!).

All in all, temperatures and weather are just one more balancing act I have to do on a daily basis. Ah, the MonSter...

I'm just sayin' 😖

MS and Temperatures Pt. 4

I’ve mentioned a lot about warmer temperatures; for those of us with MS, you can take everything said here and apply it to cold temperatures as well! Any strong variance in temperature, up or down, can be debilitating.

These problems I have with temperatures can be frustrating and isolating.  I’m at a point where I normally need to be in a nice air conditioned room when it’s hot, or even slightly warm, out. That can be rough when it’s summertime and I want to get out and enjoy the day. 

Even though I know warm (or cold) temperatures can be a problem, there are times I still try to grit it out and deal so I can feel included, or just be able to accomplish somethings that I need to do.  That can end up being rough on me and my dear daughter. 

I’ve been at this a while (some days it feels like forever), and there are times I want to just push through, knowing I may not function well for a bit in order to "do normal".  I know I can get cool and recover.  Sometimes though, I overdo, and the recovery can be long and difficult . I have to "choose my battles" very wisely, plan ahead, and listen to the signals my body gives me.

MS and Temperatures Pt. 3

I can have lots of different problems when it gets warm.  People are sometimes shocked by the many types of symptoms that I can have all at the same time...even to the point of not believing me if I choose to tell them just how I am feeling.

It’s important to remember that we are talking about the brain and nervous system.  It’s vast, complex, and controls everything in the human body, so of course damage to it can cause a lot of strange problems. 

From fatigue, excessive pain, trouble moving my hands, arms, and legs, vision (if I get too warm, my vision goes blurry; if exposed to certain lighting, I have migraines and loss of vision), speaking (I slur my words when I get warm or worn), cognition (I forget everything when I’m too hot; and don't get me started on the panic), weird sensations (sometimes I feel like my skin is soaking wet when it isn't; or worse...creepy crawlies 😨), mood swings (see previous posts for that fun adventure), and more. 

My symptoms are as vast and complex as the brain and nervous system.  They may or may not be apparent everyday, but will definitely show up if I am not cautious.

MS and Temperatures Pt. 2

When temps go up, I often have problems, but typically, if I cool down, I will be ok.  The signals being sent along those damaged nerves have a much better chance of making it where they are supposed to go if the temperature is cool. 

Sorry to go back to that analogy, but, think of cooling down as a way of getting that charging phone and frayed cord back in the right position.
The temporary worsening of symptoms  isn’t a new worsening of my disease; the disease didn’t suddenly progress in front of you.  The problems I am having are because of damage that’s already been done.  I always have that damage and the potential for those problems, but because myelin is like an insulation, temperature changes are going to highlight the damages' effects.

It doesn’t take a big swing in temperature to cause a problem. 😜 If the room goes up by even a degree, it can have an effect on me.  My nerves, like a house without insulation, can feel the changes outside much more easily than if it was fully insulated.

MS and Temperatures Pt. 1

My problems with temperatures have a lot to do with what my disease does to me.  MS makes my immune system attack the lining around my nerves (think of this lining as insulation).  This insulation is called myelin and it gets damaged or destroyed because my immune system thinks it’s an intruder.  The same way it would try to fight a virus, it fights our nervous system (ugh, the nerve! How rude! 😋 Sorry, I had to). 

My favorite way of looking at this is comparing it to a frayed wire on phone charger.  If the wire is frayed, your phone and the charging cord will often need to be in a particular position for your phone to charge.  That’s how my body has become with MS.  The longer I’ve had MS and the more active it is, the more frayed sections I have.  Now, when it starts to get warm, no matter what position my “wires” are in, I begin to have problems.  That’s because those damaged wires (my nerves) have trouble conducting those electrical signals when the temperature goes up.  If it gets too warm, and my nerves lack that insulation (the myelin), the signals will be even slower than normal or may not make it where they are going at all. 

For example, my brain could send a signal to lift my foot, but it doesn’t get there in time (or at all), but the rest of the signals my brain sent out to make me walk do make it, so then I end up falling.  That communication between my brain and the rest of my body along those electrical wire-like nerves is what’s messed up.

MS moods #3

So what to do?

In some ways, I have chosen to shut myself off from "normal" life, knowing that the isolation takes its toll, but not willing to inflict this part of my disease on innocents (and not being able to have the ongoing energy necessary to prevent the inevitable).

I think it’s important to talk to your family and friends about it, if they are willing to really listen.

My daughter is often more aware of it all than I even am, and she blesses me with her loving, understanding heart. She has a huge capacity to forgive her mom!

I've tried to explain to a few others, but have felt as if they don't even try to begin to "get it". So, I either limit time with them or use all my energy to make time with them "OK".

It isn't always easy, to be so aware of yet another "MS thing", especially one that would NOT be socially understood and one that can take away so much from me; but, just being mindful that it’s an issue has seemed to help me (at least some of the time). It’s not an excuse, it’s informing myself and others, and using that information to help me move through my day-to-day life.

I need to allow myself to be ok with saying “Hey, I have this problem related to my MS.” It may sound like a convenient excuse to others, but it is a real issue...one I deal with EVERY SINGLE DAY.

I'm just sayin' 😐

MS moods #2

Mood swings are a symptom that many people don’t realize can be attributed to MS. Rapid and sometimes constant emotional changes are actually MS-related; not only because of the emotional & physical stress any chronic  disease can bring. With MS, you can have lesions in the area that controls your emotions the same way you can have them in areas that affect your arms or legs. There are two parts of the brain associated with emotions, one where they are formed and one where they are controlled. A lesion in either area can affect your mood swings or even cause pseudobulbar affect (PBA), where you laugh or cry suddenly with seemingly no trigger at all. You can also have your emotional responses scrambled, so you may cry when you really want to laugh and vice versa.

External factors can also lead to mood swings. Living with MS can cause a tremendous amount of pent up frustration, stress, anxiety, pain, isolation, and that all can lead to depression. It can be very hard to explain to others what it’s like going to bed each night not knowing if you will be able to walk etc. in the morning; having to come to the realization that you cannot do things the way you used to; to never be able to plan because life is not just day-to-day, but hour-to-hour. Not to mention the fact that you have lost employment capabilities and even mobility due to the disease, making your entire existence dependant on someone else.

Sometimes, no matter how positive you choose to be, no matter how happy a face you put on, there are lingering concerns in the back of your mind, whether you realize it or not. If you don’t confront these thoughts, they can bubble to the surface at inappropriate times.

Whether they are caused by the disease itself or the effects of having the disease, sudden mood swings can be a living hell. It’s bad enough that many of us are in pain much of the time, but sudden mood swings have the awful effect of causing pain in the ones we love. I know I personally have had many sudden outburst of emotion caused by my mood swings. The worst part of that for me, is that when I have these outbursts, I know that it’s not me. That’s not the real me that’s angry or sad. It just happens and I end up feeling tremendous regret at the ways I’ve acted or about the things I’ve said. You begin to feel like a bad person. I know that it also can cause others to think of me as being a different person then who I really am. It all would take a toll on anyone.

Like most MS symptoms, the level of severity can vary greatly from person to person, and even day to day for a particular person. I have days where I feel fine and notice no differences. I have others where I’m sure it seems I’m near manic or bipolar.

All of the normal MS triggers, like stress, temperature, humidity, and fatigue can play into the variance, frequency, and severity of my mood swings just as they all play into the variance of my physical symptoms.

MS moods #1

Like many with MS, I have my fair share of problems with walking, numbness, spasms, pain, and fatigue. Some of my worst symptoms though, are not physical in nature and fall under the category of emotional and cognitive deficits. I’m talking about mood swings, forgetfulness, and the inability to process information.

Forgetfulness is scary...is it my age or my disease or something else?

Inability for my brain to process information...again, scary. But also makes me feel stupid, limits certain activities, and is just plan annoying.

But, let's focus on the real "elephant in the room"...mood swings.

For those with MS, the frequent and almost instant changing of moods is a symptom that no doubt has a profound effect on many relationships. It is a terrible symptom that many don’t even realize is related to their MS. While these constant emotional changes can be hurtful to those we care about the most, they can also be horrifying for us.

So what are these mood swings I’m talking about? I think of it as a rapid change in thought and emotion that seems to come on instantly - the roller coaster, as my daughter calls it...but it is not a "fun ride", for me or anyone around me. I can go from super happy to super depressed in the blink of an eye! The worst part of this is that it can seem like there is no reason for it all. Other times, the smallest of things, a commercial, a song, even seeing a certain color, can trigger it. It’s not only a matter of being happy and then depressed, pretty much any set of emotions can pop up. Anger, of course, is one of the scarier and more destructive ones. It’s also not always a positive emotion to a negative one, in can be in reverse too. I’m sure I seem awful when I suddenly get angry about something, anything, and everything, but I probably look just as crazy when I go from very angry to super happy and loving the world. The emotions really seem to be all over the place.

Judging

I’m trying to look inward to see what I need to change in my life to come closer to Christ and live His teachings. Trying to accept who I am today, knowing that tomorrow I have the privilege to be better.

For everyone else, I allow them to do the same...leaving their judging to Christ and His perfect understanding.

This is my goal...I'm a work in progress, but I am working on this.

I'm just sayin' 💖

Wednesday Wisdom

"Belonging is being accepted for you.  Fitting in is being accepted for being like everyone else."
                                — Brené Brown

Everyone needs to feel a sense of belonging - fitting in may feel "right" for a time, but belonging IS right.

Just sayin' 😊

3 short phrases

In dealing with "life", I am coming to understand the wisdom in 3 short phrases...

"It's just news" from a Chinese folktale;

"Let it be" from the Beatles; and,

"This, too, shall pass".

What weighs us down so heavily today may not even be remembered next month - sometimes, it really only takes a day or two of perspective to change the stress a situation may bring.

In addition, there may be things that seem awful at first...but in hindsight, are a blessing.

When "life" seems to be going SPLAT, it is good to remember...

NOTHING is permanent...life is wibbly wobbly...change is constant.

I'm just sayin' 😊

Wednesday Wisdom

"I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, It's a way of looking at life through the wrong end of a telescope. Which is what I do, And that enables you to laugh at life's realities."
                         - Dr. Seuss

Thoughts on chronic disease

For many, living with a chronic disease like Multiple Sclerosis, can feel like the disease consumes you. Depending on how long you’ve had it and the severity of your symptoms, it begins to feel like it leaches into every minute part of your existence. Not only in the way you physically feel, or in the difficulties you face, but in what you see, how you see yourself, and, definitely, in the way people treat you. MS can be this all-encompassing entity that begins to soak up everything around you, tainting it, leaving you with constant reminders about the change in your life. MS is EVERYWHERE!!

It's nearly impossible to not focus on my disease. After all, the disease never leaves me. After time, even many of my symptoms never leave me. I am left with physical reminders, even if they happen to be invisible. Fatigue, pain, weakness in my extremities, problems talking, and difficulty even thinking are constant issues that prevent me from ever forgetting that I am fighting a disease. (Let's not even get into what all this does to my dear daughter and me emotionally.)

Not only does my body remind me, but well-meaning friends are also guilty of this. Constant inquires about how I  am feeling, why I'm not "better yet", or why I haven’t been in touch or been to place "xyz", and the whole "out of sight, out of mind" mentality  serve as reminders that I am different than others...and my life is much different than I wish.  If all of that wasn't enough, even the places I look for help, like social media and the community that comes along with it, while normally helpful, can make it near impossible to get away from my disease.

There are no vacation days...I cannot leave it home or temporarily toss it aside to pick up later when it's more convenient.

But...I am not a victim to the disease.
It is MY disease...I have it, it doesn't have me! I AM A MS WARRIOR!!

I'm just sayin' 😊