It All Depends...
What am I talking about when I say, “It all depends…” Well, exactly that. Whether I’m making plans, answering how I’m feeling, deciding to go to the store, etc. Every choice I make, and I’m sure this is how it is for many of y’all with MS as well; every decision is based on other factors.
If I’m asked how I’m feeling that day… well it depends. Is it over 100 degrees outside? Did I over do it the day before? Did I not get enough sleep? There is no easy answer to these daily questions and decisions we make.
When I’m planning a trip to the grocery store, many people prepare for this by cutting coupons, checking their bank account and all of that fun stuff. And while that is something that I do as well, that’s the easy part of preparing a trip to the grocery store. I have to plan a time to go where I know it’s not going to be crazy busy. I have to check the weather, to make sure that I will be okay to grocery shop and still be able to function afterwards. Am I going to need assistance in the store? Will there be close parking if a handicapped spot is not available? Does this sound familiar? I also have to make sure that if I need it, someone will be able to help me unload the car when I get home.
Now, it’s summer time… my kids are out of school and wanting to do things fun outside, etc. We have friends that are planning trips to the beach, the kids want to go out on the boat at the lake, and the list goes on and on… Now, I’m stubborn. I don’t want to be the reason for my family to not have fun this summer. But I am still trying to plan activities to where I won’t become a burden, but also, so that I can enjoy the activities as well.
When making plans during the summer, I make sure that I have my cooling gear, but also that I have a plan or let’s call it an ‘escape route’ to get take a break from the heat. I can’t just take like a 5 minute cool off break; at times I have to get into a cold shower to bring my body temperature down, to where I’m not having what feels like a heat stroke. I never used to have this, by the way. I grew up being outside in the sun, being at the beach, river or lake, all of that. Not having to worry about cooling off. So this is a big change for me.
I of course am getting my cooling products out and ready… since our Texas Heat Index is already reaching 100 degrees, but it’s not always that it’s ‘too hot’ outside, it’s the fact that when it’s just hot or at times ‘warm’ outside, it can cause my fatigue to worsen. Not just the ‘feeling tired’ kind of fatigue, but the physical fatigue. Where limbs feel heavier and you’re just sluggish… it’s not fun at all.
This is something that I feel can be really misunderstood to those people who don’t have MS… is that it’s not just ONE thing that needs to be taken into consideration but many, at least in my case. I know that my family and friends have noticed that I’m more active in the cooler months physically, but also mentally.
It’s not like I can just hibernate for the summer either, though at times it does sound like a very good idea. I also have to take into account how much it’s going to cost to keep my house cool for the summer, which is never a fun thing to consider. If you have wanted to faint from just looking at your electric bill during the summer, you know what I’m talking about.
One thing that I’ve heard a lot is that, I wouldn’t be so tired if I went to bed early and slept longer. Honestly, if it was that easy, don’t you think I would do that? Sorry, but I get frustrated on statements made that are common sense, but it’s not like I haven’t considered the suggestion in the first place. When I lay down to go to sleep, I can’t just fall asleep easily, like a lot of people do. Again, it all depends on certain circumstances… Maybe I can’t go to sleep when I WANT to because I’m in pain, and not the kind of pain that you can take Tylenol to get rid of. Maybe I’m overheated and can’t go to sleep cause it’s too hot, which being overheated then caused a migraine, then goes the domino effect.
I think I could write a novel on all different situations I’ve been in, where there are multiple factors that come into play. You know when people say; they wish they could be a kid again to not have a care in the world? Usually, that’s being referred to situations where adults want a break from their job, money issues, etc. I wish I could be a kid again so that I could get out of bed with ease and also take a nap whenever and in whatever position available.
Have you experienced any of these vision symptoms? (select all that apply)