Howdy folks! Today is Monday, July 5th, so we’re one day past the 4th! Hope everyone had a great time celebrating yesterday (For those of us in the USA) with friends and family! Our neighborhood did a fireworks show that was really good with the bonus of no traffic jam! Winner Winner there! 🙂
Last week was a good week! It was our Summer vacation and we took our family (And four others) to the Florida Panhandle for the week! If you haven’t been to the Panama City Beach or Destin area of Florida… I highly suggest it. The beaches are some of the prettiest in the world and the water is often a clear blue, which makes for great snorkeling and swimming! A good time will be had by all… I can ALMOST promise you that! 🙂
Are you curious about the title of this post? “Fun in the Sun”? Well, if you’ve read my blog before or know a thing or two about MS, then you are aware that heat can be a significant issue for those with MS. While realizing that heat impacts everyone with MS differently (Or sometimes not at all! Lucky…), some of the more common issues that folks experience are: Increased fatigue, Seizures (I call them that, but not sure if that is the true technical term), Mobility issues, Tremors, Muscle Weakness…. Did I mention fatigue? That is certainly not an all-inclusive list of the issues we experience, but it includes the things I experience as well as many of the folks I follow in various MS communities. Getting over heated can be a real bummer. It’s one of those… It is what it is … kind of things for sure!
Our vacation last week started with COOLER temperatures! Ahhh… so nice! 🙂 The high temperatures were in the very low 80’s, which was super nice for being outside. The cooler temperatures meant I was able to spend more time on the beach without dizziness or fatigue! It was a welcome change from the prior year. Not that our last beach trip was bad or anything, it’s just that the high temperatures were in the mid 90’s. The higher temperatures resulted in me needing to take a 2-3 hour “break” each day. My “break” consisted of taking a nap or simply resting in air conditioning during the warmest part of the day. I don’t know what I would do without the air conditioning. It’s become a life saver during the hottest months of the year! It’s tough to imagine how folks with MS make it through the summer in desert States where the high’s are consistently over 100 degrees. Yikes!
Changing directions on you a bit…. My last post touched on the “Crap gap” experienced by folks taking Ocrevus (Remember, that is the MS Treatment I am currently on. It’s a twice yearly infusion.) as we approach our next scheduled infusion. Many people with MS who are on Ocrevus experience a time of feeling NOT SO GOOD 4-6 weeks out from the next infusion of the drug. What I have felt in the past is an increase in fatigue, dizziness and, in general, low energy and feeling of weakness. The week before last I was feeling very tired and pretty dizzy for 3 or 4 days in row. As I was, approximately, 6 weeks out from my next infusion… I thought I might be starting the “Crap gap”. Definitely was on my mind a lot as our vacation was the following week… would have been tough to be experiencing all that tiredness and dizziness when we’re supposed to be having a good time. Right?
Fortunately, as I mentioned, last week was a good week! While I was still tired and more than ready for bed by 830 or so… I felt pretty good for the whole week. What a blessing! 🙂 We even got a chance to go deep-sea fishing and I didn’t get motion sickness even though we were in the 3-5 foot waves. Such a good time! Although, we had issues with dolphins stealing our Red Snapper right off the hook. I used to really love dolphins and now I’m kind of annoyed by them. 🙂 I’m sure I’ll get over that fast! I posted a photo from the fishing trip at the bottom of this post. Hope it comes out! It’s me and two of my sons! 🙂
Alright folks… I’ll end there today. I am roughly one month out from my next infusion, so we’ll see things go!
Take care and drop me a line if you feel up to it! 🙂
Steve
#1guywithms
#Ocrevus
#Crapgap
