HOWDY! How’s that for a start? Yep, it’s been over a week since my last post… I feel a little bit bad about that! Not bad as in… it kept me up last night or… I couldn’t stop crying… or… the World is coming to an end because I didn’t write anything… just bad because I didn’t make the time. Granted, life is busy (I know I keep saying that), but this blog is important to me for a number of reasons and I want to make sure I’m doing it! My daughter is back in school two days a week now (Wednesday/Thursday) so that should provide some reliable time to sit down and type away. I believe she is scheduled to go back full time at the end of October, but we’ll just have to see.
Anyway… I hope everyone is appreciating the cool down as much as I am! It’s so nice to be outside when the temperatures are on the cooler side. In general, Fall is my favorite time of the year… the leaves change, it’s sweatshirt weather, less bugs so more cookouts (!)… there’s a whole host of reasons. Also, as I’ve mentioned many times, I don’t have to worry about “over-heating” as much when the temps are lower (Duh), which makes many of the things I love about Fall that much more doable. 🙂 Good times!
In my last post I provided my “MS” definition for fatigue. I liked my creative definition so much that I actually posted it in one of the MS Information/Support Groups I’m part of on FB. It was quite a hit! Many folks commented on my post and let me, and everyone else, know they totally agreed with the definition. That probably isn’t that big of a deal to a lot of people, but for folks with chronic medical conditions… it’s always nice to know that you aren’t alone. That’s a pretty big deal.
I shared the above with a couple of my close friends… and provided the background that the content came out of me as I was feeling pretty fatigued that week… and one of them (Whom we’d had dinner with the same week) said, “… you didn’t seem tired to me at all”. Isn’t that a kicker? 🙂 I think it’s great that I am fairly proficient at hiding how I’m feeling! I don’t want to burden anyone, especially my family and friends, with the day-to-day “Ho-Hum’s” that come along with MS. However… I don’t know… but.. I feel like a “But” is coming… 🙂
BUT… By not sharing or being transparent… am I doing myself and the people I love and care about a disservice? It’s a tough question for me to answer. If I’m being honest with myself… and you… I want everyone to think everything is just fine. All of the time. Even when it isn’t.
For example… I can tell you my energy level has not pulled back to where it was before my last exacerbation (Remember… this means a time when MS is active). My wife has noticed, but have my friends? If they’ve noticed I’m my tiredness do they just think I’m being lazy? I know the inconsistency is frustrating for my wife (ie One day up and about… then a day where I just want to sit around) … and as she knows me best… I can only wonder how perceptions are for those one more layer out? It’s SO weird and frustrating… cutting the grass wears me out one day, but I can do a 3-4 mile walk with my wife the next day and feel pretty good. The phrase, “It just sucks sometimes” come to mind.
It just makes me wonder what the right level of information to share with everyone should be. I don’t want to be a “The Boy Who Cried Wolf” every time there’s a blip on the radar, but is it OK to keep everything to myself and just internalize? I don’t have a good answer to that.
Well, I’m certainly not going to solve that one anytime soon. It’s one of the reasons I started this blog. To help me work things out in my head and, maybe, do a bit better at communicating with everyone in my life. Time will tell how effective this is….
Have a great week and I’ll talk to you soon!
