Hey all…back from my “winter break with the kids/parents visiting from out of town visit” hiatus. I have good news and bad news. The BAD NEWS is that I had a pretty bad fall. Knees and palms were pretty shredded up, I may have a fucked up wrist -it hurts like hell to “move it like this” to which my kids promptly said, “well then DON’T move it like that! They are SO helpful:) Since my landing point was my check/side of face, I managed to get me a big ole bruise on my face.
The GOOD NEWS is that this fall had absolutely NOTHING to do with the MS. I was out for a long walk with Spanky (our dog) and was actually aware of and appreciating how good a day it was (MS shit wise.). We were still a good ways from home when dark storm clouds quickly rolled in and we were hit with one BIG ASS rainstorm. I honestly don’t know if I have ever experienced going from not raining at all to torrential downpour that has you SOAKED within a minute.
Spanky has many unique and wonderful qualities but being a “water weenie” is NOT one of them. A true bonified baby when it comes to getting wet. One look out the front door; if he even sees that the pavement is wet he turns around and trys to go back inside. Not surprising then to hear that he was NOT a fan of this storm and the fact that we were both drenched to the bone in a hot minute. He wanted to go home. So I picked up my pace (with a quick nod to the fact that I was ABLE to do so) and continued on our way. We probably would have made it, soaking wet, but safe and sound, if it hadn’t been the additional two little things Mother Nature decided to throw our way. First, there was the hail. To be more specific BIG ASS HAIL that hurt like hell when they were pelting us. And again…who knows….MAYBE my pour little “water weenie” and I would have made it home soaking wet and a bit sore from the BIG ASS frozen balls hitting us…but we will NEVER know. Because that is when that BITCH (aka Mother Nature) decided to throw her final twist into the mix – the LOUDEST clap of thunder I think I have ever heard. Although not normally phased by thunder or fireworks (or gunfire for that matter) that was the last straw for poor Spanky. Sensory overload and he freaked out! He first tried to bolt and then changed directions and cut directly across my path, putting his body directly in front of my “rapidly” moving body. There wasn’t any question that I was going down. All that remained a question was WHAT would hit the ground first and HOW BAD would it be.
Bad enough to instill in my body a fun little thing it likes to do whenever I fall because of the MS. It’s called “let’s play paralyzed for a minute, or two, or ten or….” One of the things that I am trying to learn is to actually stop and allow myself to appreciate what I am accomplishing these days since it is so much more than in the past while living with MS.
In my first years with the diagnosis my mobility declined very rapidly and I went from running 6-8 miles 6 days a week, to needing to be on the Segway to manage the block and a half to the kids bus stop in less than a year. One of the most annoying (aka SHITTY) things about this “fantastical” disease is you DON’T know what tomorrow will be like. HELL there are times that you don’t even know what the later part of a given day might bring about. Although I have thought I was welcoming and embracing the improvements in both mobility AND symptoms that I have experienced, I realized that I am not REALLY and TRULY allowing myself to accept or enjoy it.
Part of this is because I feel guilty saying anything, when I know that there are SO many others out there dealing with crap and experiencing things way worse than anything that I have yet to live through. Another part of it is the not knowing (and believing) that this “feeling good” is going to last. The truth is, it won’t. Having another flair up, or experiencing more symptoms is inevitable because no matter how much better I might be doing or feeling, it doesn’t erase the fact that I happen to have MS and there doesn’t happen to be a cure for it.
Although I have improved immensely over the past 5 years I am constantly waiting for the other shoe to drop (OR should I say fall.) To have MS swoop back in and take over my life again. Have it become that all consuming thought that rings through my head over and over again…”I have MS, I have MS.” The doubt that comes hand in hand with that damn voice is FUCKING ANNOYING. It’s message reminding me that I am NOT who I was before; that I am “marred” with this disease and maybe, just MAYBE I won’t be able to do something that I set out to do. That “something” could be big, like traveling for 17 hours across the country with the three kids to visit my folks. I NEVER doubted my ability to be able to JUST DO IT before the MS…I just DID it. But then with the diagnosis (and THE voice in my head) I began constantly worrying…will I make it through the trip without loosing a child, or maybe I won’t make it from the plane to the bus in time because I walk too slowly, or what if I fall down right smack dab in middle of an airport somewhere, with the “fun” paralysis I mentioned earlier, dropping in for a visit. I used to have confidence in my ability to live my life; to feel in charge and know that I could do ANYTHING that I set out to do. It seems that MS has dampened that resolve and because of that, it has stollen a bit of ME – who I AM and how I have always defined myself.
What I hate the most is that it took away my confidence in KNOWING that I could do things; that I could do ANYTHING I set my mind too. This thing that arrived so suddenly and WITHOUT an invitation into my life managed in a fleeting moment to rob me of things that were core to the characteristics I would use to describe myself. I lost my confidence and in turn then lost my independence.
I work at winning this battle. I notice the improvements to my mobility and many of my symptoms, but I am not allowing myself to celebrate or enjoy them. The black cloud of “it could come back tonight while I am sleeping” or hesitating to make plans or commit to something because I am unsure of whether or not I will be up for it, still lingers on my horizon. The stupidly annoying voice inside my head STILL chanting “I have MS, I have MS” all day, every day.
Until it didn’t. The chant wasn’t there ALL the time and there were blissful moments of silence. I began to do things again without thinking about the MS and without worrying about whether or not I COULD do something or whether I WOULD make it through to whatever the “end” was. I didn’t notice the silence right away. It was a slow realization. My handicap parking plaquard lay dorment in my glove box, I began to walk Spanky farther and farther without worrying that the pain would render me useless, either while out on the walk, or sometime later in the day. My workouts at the gym slowly returning to levels I would hit BEFORE the “‘fantastical” disease. I spoke in conversations with more confidence and I wouldn’t fumble for words. I headed off for a day of errands and kid shuttling WITHOUT thinking “shit, can I make it? Will I be able to fulfill my commitments?” Through ALL of these changes – there was a much needed hiatus from the damn MS monster that set up residency in my mind almost ten years ago.
It wasn’t until this fall that I realized all of this…that I noticed the peaceful stillness in my mind. When I fell and I was lying on the sidewalk with rain and the HUGE ASS hail balls pelting my face, I did NOT once think “I have MS” OR “I have fallen BECAUSE I have MS.” Instead I was thinking “I have fallen because of my FUCKING dog.” THAT was a wonderful/beautiful thing to be thinking (maybe not for Spanky, but for me.) That meant, in THAT moment in time, I was actually living through something that any “normal/non-MS” person would experience. My life (and my MIND) had briefly returned to that PRE-MS freedom.
SO….by falling and getting one BIG ASS black eye and one sore and achy body, I had a moment to reclaim myself just a bit. I experienced (and APPRECIATED) the moment for what it was – just a complete FUCK UP that ANYONE could have accomplished and NOT another MS moment!!
My eye has healed up pretty well, and the cuts and scrapes on my hands and knees are a distant memory. All in all, I would chalk this one up to a check in the “positive” box of life. Having a NON-MS moment kinda ROCKED!
Just found your site. Wanted to let you know I think you’re a gonzo writer. I’m impressed. I was diagnosed in 1998. I was already in my 60s. I don’t know if that’s why I’m relatively unscathed by the disease. Since then I’ve had a bout with cancer and was diagnosed with RA. I blame it all on my DNA! Keep writing and we’ll keep writing. Thank you for this blog.
Hi Marilyn,
Thanks so much and glad you found me. Damn DNA!:) I’ll keep it up and hope you keep reading.
Cheers,
Meg (aka BBH)
Hello-I just discovered your blog and am glad I did. I am recently diagnosed (Dec 2015) and reading your posts remind me that some of this crap is funny! Thanks!!
Thanks Joanna!
Decided early on that if I didn’t find the reasons to laugh and smile it might get pretty old pretty fast:)
Meg,
I am so glad you found me!You definitely speak my language. Most times I forget the diagnosis. Not sure I have even blogged about it but I went through hell with my husband and in dealing with people/professionals/ the system at the end of a conversation or whatever, I might be “Oh yeah, I have been diagnosed with MS”. I totally forget when I am sitting down and even my doctor says sometimes a fall is just a fall.
🙂 Glad I found you as well. I will add you blog to my Resources page when back in front of the computer:) Looke forward to connecting more:)
Cheers!
Meg (aka BBH)
pssst …psssst ( w h i s p e r i n g )
Meg (•°͜°•) Meg, psst-pssst
w e’ r e. -s t i l l- .w a i t i n g. -f o r- .t h e. …
… y o u. -k n o w- !
hee–hee–hee
~ Kevin
¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯”¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯
♪♪ ┗(•°͜°•)┓♪♪
♪♪┏(°‿°)┛♪♪
Thanks Barry!
Really appreciate your kind words and support. Awesome that you are seeking out info to help MSers in your neck of the woods! I look forward to “chatting” more with you!:)
Cheers!
Meg (aka BBH)
Positively entertaining, action-packed and helpful as always Megan…looking forward
to the next one already ?✨!xxx
Awe shucks….Thanks Liz!
As for looking forward to the next one…I am too! Often times when I sit down to write, it just seems to spew out of me and I don’t even REMEMBER what I wrote. Which means that I am finding that I enjoy going back and reading older posts. Always prompts the thought….”HOLY SHIT! I wrote that?!?!?!” 🙂 THIS is what it is like to live in MY world and in MY mind:) hehe
Cheers!
Meg (aka BBH)
Hey Meg, How are things going? When I read this blog I think how similar your course is to mine. I too use to run somewhere around 10 miles a week. It was on a back path at our state park without mileage markers but I clocked it with the highway running along side. Anyway, from my point of view, I can only offer one fun fact that I have come up with.
I know how people tend to worry about things. I know this leads to stress. I also know that stress is not good for us. I’ve learned that worrying does not help a single thing, it does not make anything happen different, and what ever causes this stress usually happens anyway, stressed at or not.
I realize it sounds silly not to be concerned about things but I’ve learned not to so much. I know easier said than done but what will it hurt to try to practice this tiny bit of nonsense whether it works or not. Whatever.
I enjoy your blogs. Keep up the good work! On a different note, I had a at named Spanky for 19 years. He was a tom car but we loved the single life but were true buddies. He had a purr that you could hear across the room. I like that name and hope your Spanky brings you as much joy as mine did.
Nuff said. I’ll see you on the site
Hey Mike!
Thanks for stopping by! ?Your support is much appreciated!
I completely agree with u about stress being a worthless and evil thing. I too try and avoid it as much as possible.
And SPANKY is a great name, even IF it’s a cat;) hehe
Cheers!
Meg (aka BBH)
Hi Megan, You are one strong and hilarious lady with a gorgeous family! I hate to hear what you are going through, but your strength and humor certainly shine through. Kudos to you for educating all of us who see your blog. Big hugs to you.
Kathi (Chris Stewart’s mom)
Hi Kathi!
Thanks so much for the kind words and for taking the time to read/follow my blog!
Hope all is well!
Cheers,
Meg (aka BBH)
Hello Meg,
First time I am replying to you, but I had to. I really enjoyed your last blog, about you, the rain, the hail, the dog, the black eye and especially realizing that you had SILENCE in your mind about the MS.
I enjoy your sense of humour and your message comes across strong and clear. You would be a perfect FRIEND in our MS group….you would fit right in, cause we LOVE to laugh, share and understand!
I will keep on reading!
Hi Mary Ellen!
Thanks so much for taking the time to read my blog AND for your kind words! It makes me so happy to hear that there are in fact people (other than my parents and my EX)that visit!
Your MS group sounds like a good one. After all if you can’t find the reasons to laugh and smile at some of the shit that MS gives us it’s gonna be a pretty depressing ride;)
Cheers!
Meg (aka BBH)