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.

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…

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.

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.