Good Afternoon! It’s almost 1pm on Monday, March 1st, 2021 and it’s another good day to live in North Carolina! A little bit of rain this morning has given way to some sunshine, which is awfully nice. We’ve not seen the sun a whole lot lately, so we’ll take what we can get! And… it’s MARCH! What in the world! Time is just flying… It’ll be Christmas before we can blink twice! 🙂
It has been a solid two weeks since my last post. I have no excuse other than laziness. 🙂 My last post talked about how I was feeling after my latest infusion of Ocrevus… which was not much fun. I am happy to say I am feeling NORMAL again… whatever that means! Right?
Normal! Such a word! Such profound meaning! And… so absolutely subjective! 🙂
I’ve addressed the whole. “.. but you look so normal” thing in prior posts, but it struck me as I sat down to write something today… that I needed to give it a bit more attention. Lucky you!
What does normal mean for me? Well, my most current definition would include things like: I am not so dizzy that I feel the need to sit or lay down, When I am active I don’t feel like I’m going to pass out, Getting up or taking a hot shower in the morning doesn’t make me feel like I’ve just run a marathon and, most importantly, I’m not thinking about MS too much throughout the day!
What do you think? Can you relate? I know we all have our own “Normal” and that, in general, it probably aligns fairly consistently with people who are like us (Age, Number of kids, Work/Life, etc.). When friends of mine are talking about relationships, kids, or work… I definitely can relate to it. Even if it’s just in small ways. But, you throw something like MS into the ring and trying to relate can get rather complicated. At least in my humble opinion.
“Steve?”, you say!
“What can I do for you?”, I cleverly retort!
“Can you provide an example of what you’re talking about?”, comes your anxious reply!
“Of course!”, I say in my calmest, non-patronizing tone!
Gosh. I love word play. 🙂
An example of a friend/loved one trying to relate to my personal “Normal” can be something like…. hmmm… I’ll do my best here.
A friend calls and asks me to go fishing. It’s been one of those dizzy kind of days, but I really enjoy fishing, so I agree to go along. Friend picks me up, we drive to a lake, walk down to the shoreline, bait-up and we’re fishing and talking about life. We don’t catch anything (I’m throwing this in there so my friends reading this will know I’m being truthful), pack up and head home.
That’s what my friend(s) see. I went fishing, participated, talked the whole time… all in all a fun time. No biggee! Right?
Well, the piece of this scenario that went unnoticed by friend was… I was so dizzy in the car that I felt like I was going to pass out. I had to close my eyes during the car ride because the lines flickering by on the highway made me feel like my head was spinning. The reason I didn’t change fishing lures is because my fingers were shaking a bit and I didn’t trust myself to tie on a new one (And I would never ask for help!!! Right? I’m such a dummy). Finally… the long walk up the hill on the way back to the car… just about did me in. None of which, I assume, my friend was aware of.
Re-reading that piece sounds like a bit of a pity party to me, but that doesn’t mean it’s not the truth. I may not have done a great job explaining things with that scenario, but my hope is that we begin to see that… just because everything looks “Normal”, doesn’t mean it really is.
I’ve mentioned before that the whole, “… but you look so normal” comment is one of the major gripes people with MS seem to have. It certainly can be frustrating to hear that over and over, but.. I … guess… it is what it is! In some ways it is great that many of us look “Normal” and can just blend in with everyone else. At other times, when things are tough, it’s definitely the last thing someone may want to hear.
OK. I’ll get off my soap box. I know… it’s about time! For sure! I probably should address the communication piece and how valuable it might be to let people know how you’re feeling, but I’ll save that for another day! 🙂
I probably won’t post until late next week! My wife and I are taking our 8 year daughter (And my youngest son who is 18) to Disney World this week, so we’ll be offline for a bit. I am especially grateful that my energy level is pretty good right now and that I can handle Disney…. guess we’ll just see. I’m sure I’ll write about it….
Take care and until next time!
Steve
