I did a thing today.
I’m coming up on my last day of anti-viral medication for my damn, cursed shingles and I’m DYING to get out of this house and into the world. I miss my work family! I miss people! I miss putting on make up and pretending to be just like YOU (not YOU, you, but YOU them who leave their houses every day in cute clothes and fun outfits). So I did a little test.
I took me and Stanley to Target for a few necessary supplies. I’d have Stanley, sure, but I would also have a cart to hold on to so how bad could it be? It felt like a low-risk test. The sun was out. The humidity was low-ish. AND I HAVE A NEW CONVERTIBLE TO DRIVE WITH VENTILATED COOLING SEATS. Sorry. I still get super excited about that fact every time I think about it. I’m shallow. I can’t hide it.
My list of what I needed at Target was somewhat short. I had my path mapped out to accommodate the least amount of steps possible. I really thought it would be OK. And it was. Kind of.
I mean, I had to stop and pee the minute I arrived at the store. THEN, I had to stop and rest about half way through my store journey because my legs started to drag and hate me. No worries! There is a bench right there next to the pharmacy as if it were put there for people just like me. I sat there for 15 minutes pretending to be on the phone. I have no idea why it felt more OK to sit there if I were on an important phone call. I neglected to realize that I was merely proving to my fellow shoppers that I could not walk and talk at the same time but no matter. I took a rest.
I got through check out and lo! My legs turned wonky again so I headed to the in-store Starbucks to get a completely unnecessary cold brew coffee so I could sit in the cafe area and rest again. I made an actual phone call during this rest that lasted about 20 minutes.
I had to have walked like 12,000 steps by now and that’s why I was so tired! Just to prove myself right, I checked my Stepz app on my phone.
Um. OK. I had just walked a whopping 664 steps. How is that even possible? I am a pathetic excuse for a Target shopper. I needed help unloading my car when I got home because I was so physically exhausted. Thankfully, though, help was available because my legs were so tired when I got home that I *almost* fell, over absolutely nothing in my damn living room, caught myself while I was spinning and lurching in super-slow-falling motion and said a quick prayer to the gods of gravity that I didn’t end up on the floor in a twisted heap.
That was some walking/energy/dexterity/grace test I just failed. Yay me!
But then just a few minutes ago I sat down to rest and to obsessively check my blog stats, I found some more uplifting numbers.
I cannot lie. I get a little charge of excitement, a tiny thrill up my spotted spine every time I get a new reader. I’m such a newbie in this whole MS blogging world. There are SO many, many MS blogs out there. SO many people writing about the same things in different ways. It always nags at me that I don’t have millions of readers every single day, just dying to read the next pearls of wisdom that drip from my somewhat numb fingers once a week or so. But today was kind of awesome for a few reasons.
First, I hit a new milestone on my blog’s Facebook page where I somehow acquired 900 people who tell me they “like” my page. WHAT? Nine hundred people who aren’t being paid and who are not members of my closest friends and family are visiting my Facebook page? Ok. A good chunk of those 900 are probably friends and family who know me IRL, but I’m still kind of amazed. Nine. Hundred. People. That’s almost a thousand, y’all. I’m kind of blown away.
Then I did the other thing I do with an odd compulsive drive and that is checking my blog stats.
I know I shouldn’t do it. I know I write this thing mostly for myself. Mostly I write because it helps me to have a record, to have a reminder and to work out my own madly confusing experience with this complicated disease and the even more complicated feelings I have about having this complicated disease. I am always the person who benefits the most from the act of writing this very public record of all the crazy shit that keeps happening since I first started to think something might not be quite right with my central nervous system.
But as of today, over 50 thousand people have viewed this weird little corner of my psyche. FIFTY THOUSAND.
Again. I know this is nothing. This is pittance as it relates to MS blogs that have a huge following and bloggers who have been doing this thing longer (and probably better) than I ever could – but it kind of blew my mind in a very good way.
I realized that it’s not just the writing that helps me. It’s the reality of truly being seen for what and who I now am. It’s the overwhelming calm that comes with knowing I am not alone. Someone really does get it! Lots of people get it, in fact, but you guys REALLY get it in the way that only someone who has this disease (or some other similar malady that causes maddeningly unpredictable crazy shit to happen in your lives) truly can. No disrespect intended for my family and friends in real life…they might not be able to 100% relate but they sure try and for that I am also crazy grateful and so so lucky.
Anyway. I almost killed myself today walking only 664 steps but these other numbers that also happened today made me feel pretty good. I can’t walk so good but I can write (even with one numb pinky finger).
There are 889 more people reading this blog than I ever would have expected in the first place (a scientific equation of my total readers/followers minus approximate number of friends and family who read this because they kind of have to).
Thank you for giving me a reason to look at the bright side on this sunny day. Thank you for seeing me as I am and not running really fast in the other direction. Thanks for getting me. That’s really nice of you guys.
Amy
May 21, 2018 9:22 pmLove your writing! I have RA & pinched nerves in my back (wonky legs) and can completely identify with you on this. Keep laughing and processing it all…you arent alone!
bethnigro0212@gmail.com
May 21, 2018 9:32 pmThanks so much, Amy!! I feel like there is so much common ground with so many of these chronic conditions. There’s so much that makes each of our illnesses unique that it can be super frustrating – but then again, the things that make us the same are the things that help us find community amongst strangers. thank you for reading!!
Melissa Marks
May 22, 2018 7:00 amYou know I thank you for putting into words the feelings and reality of wanting to walk properly .. but walking in a wonky way as I do with foot drop, pain and left leg weakness .. is so darn frustrating .. tear producing at times and so super ungraceful….You get it .. everything is a production . Though I’m sorry anyone has this curse, yes I mean that .. I feel less lonely knowing you are out there too, trying to be normal with an abnormal disease . Love from Melissa 😊
bethnigro0212@gmail.com
May 22, 2018 10:57 pmI feel less lonely too, Melissa. Especially when people like you tell me I’ve helped you (without even trying really) in some crazy way. It’s almost impossible for me to believe! But super super awesome. Thanks for telling me that! ❤️
Positively Alyssa
May 22, 2018 11:48 amI must say that I absolutely LOVE your writing! You put into words how I feel most of the time and add a little personality, which is fabulous!!! Target has to be one of my favorite stores and I swear I can not go in there and spend less that $50. Even when I go in for just a few things, I find several others I need. People may say this is shallow, but I prefer Target to Walmart any day. The last time I went to a Walmart and parked in the handicap spot, this lady made horrible comments and gave me evil looks, that never happens at Target!! I thought this ignorant person did these things because of my car, which is a red sports car, but that should not matter and it does not compare to your at all!! I did not know about your Facebook page until today, but I did go onto follow you! I actually do my blog and read other blogs because i enjoy it and I might be one of the only ones that isn’t getting paid. You my dear tend to keep a smile on my face and I appreciate you!!
bethnigro0212@gmail.com
May 22, 2018 11:00 pmYa know…I got practically run off the road today by some idiot in a giant SUV and I swear to you, that never used to happen when I drove a Volkswagen. I love that I can put a smile on your face! (Even when I can’t always make it happen for myself. 😬). ❤️
Positively Alyssa
May 23, 2018 9:47 amI am so sorry to hear you almost were run off the road in your hot rod!! People just can’t drive!! Yes, you have a great way to make me smile. You have an amazing personality!!
Lauren Fioresi
May 22, 2018 4:50 pmI love reading your blog and selfishly want you to keep writing them more often because I just enjoy them so. I get you more than you will ever know. We all do. And I get such comfort from reading your posts. Because someone out there feels exactly the way I do too! My husband has MS, but not nearly like me and sometimes I just end up feeling like the complaining asshole again. But then I read your blog and I don’t feel so alone
So…thank you very much for that. Thanks for giving me comfort. Now keep writing! I must be entertained! 🤩
bethnigro0212@gmail.com
May 22, 2018 6:07 pmOn it!! 🙂 if I can entertain even one person or make another feel understood (the way you guys make me feel understood) then my job here is done. Seriously though, I get so much more than the energy it takes me to share these silly stories, it’s totally worth it to me. I promise. 🤣
midgesms
May 29, 2018 2:13 pmWe do get you! You have a marvelous way of putting your experiences into words.. & sorry but not sorry, your fierceness is bad ass! Mad respect for you Beth. Footnote: I suck at blogging. I do it then I literally forget I started one ., thanks MS for that. Then I read some like yours & think my day blows in comparison. I’m trying to stay at work & keep the fires burning , hiding my symptoms on bad days especially.. it’s getting old.
bethnigro0212@gmail.com
May 29, 2018 7:30 pmHiding is really hard. I decided from the beginning not to try and fool anyone (least of all myself). I felt like kind of a coward in some ways. Being so open about my experience of this illness felt selfish – I didn’t want to have to constantly have to explain myself over and over again when people wanted to understand what the hell was happening in my life. It was just easier to be out from the beginning! I was a daily journal writer before I was a blogger so the only difference for me was hitting “publish” and sending it out to the internet! I’m not kidding when I tell you I get more out of it than anyone else could. I am always amazed that others see themselves or tell me they benefit from reading what I write. I do it because I have to, really. Be nice to you! You’re out there killing it. Just looking at the pics of your life exhausts me! 🙂 You’re amazing. Be kind to your amazing self! <3