I have a confession to make to any and all other people that are living with Multiple Sclerosis (and other chronic illnesses) that I have connected with; either here on my blog, via various different social media platforms or through the many websites that gather patients, provide information and raise funds for the good of those of us living with this disease. I get completely, thoroughly, and totally overwhelmed with the number of different options for help, support, information and networking that are available these days.
Every morning when I open up my laptop and begin my slow crawl through my emails, FB messages, Twitter feed, and Instagram I am touched, tapped, poked or prodded by dozens of different messages about MS. I am provided with information about another fundraiser, a new support group, an app to try, a blog post to read, MS Day, MS Awareness Week, World MS Day….it’s endless. I will fully admit to opening the floodgates to this daily barrage of information. When I made the decision to begin writing about my life with MS, I jumped into the world of online “MS-NESS” with both feet – reaching out to folks at various different organizations and websites, interacting with other MSers in support groups and social media feeds. I wanted to meet others living with my disease, to hear their stories, and get to know them. So I signed up for websites, joined networks and groups and found others on social media. I did what I could to stay in the loop and to find places to share my story with others.
But so much of it is extremely fleeting for me. Usually by the time I get to the bottom of the pile, I have long forgotten about the earlier messages, even ones about things I care about; events that sparked an interest, a new network that I want to check out, a video I want to watch, a campaign I want to be a part of…all from people I consider friends. There are so many great people doing great things for a great cause, but they get lost in the shuffle of information overload. I bookmark things, send myself reminder emails and I have post-it notes all over the dining room (since I “lost” my office for the summer.) They all deserve to be recognized and I really hope that they are, even if my flakey mind can’t remember what it set out to do when I first opened up the laptop. I hope that they all know how much they are appreciated for what they do, what they are contributing to our common denominator – the fight against MS.
It is never my intent to not participate, not respond, ignore, not endorse the actions and efforts of others living with Multiple Sclerosis (or other chronic illnesses.) I think that anything and everything each of us is doing matters. Putting ourselves and our stories out there is a great way to try and educate others about our conditions and to possibly help others on their journey by letting them know they are not alone. I know finding other people that could put into words the symptoms I was experiencing and that are familiar with the routines dictated by the disease was invaluable to me. To this day I get goosebumps if I run across another MSer’s words that ring true to me.
It’s that “holy shit someone else gets it” moment…
I don’t think that will ever get old for me.
There is so much value in these different avenues that bring us together.
But there are so many different options out there now. So many organizations, groups, websites and fundraisers vying for my attention. The thing is – I genuinely do care. I have the damn disease so of course, it is “relevant” to me and my life, but it’s gotten to the point that I can’t keep up. I don’t know where to go, where to turn, what to view and what to like next. Perhaps if I had my “top 10” and only focused on those, then maybe I could keep up. But there are way more than 10 that are good and deserve time and attention and there just isn’t enough time in a day. I am constantly surprised at how many new sources I run across daily, that are really good. I find myself often thinking “how in the world have I not heard of/seen this yet?”
As I am slowly breaking away from the chronic pain and returning to being me, willing and able to function and contribute to life, I am scrambling to stay connected and keep up with all that is going on around me in the world of Multiple Sclerosis. It is actually pretty amazing just how many resources there are now (so many more than when I first put my MS Resources Page together.) It’s awesome to know that finding information and ways to connect with other MSer’s won’t be as challenging as it was when I was first diagnosed. But just as not having enough options wasn’t great back then, I’m not sure having too many is any better?
So to all those that I have gotten to know over the years, know that I do still think of you, or pop by your blog, or your you-tube channel or IG account for a quick look, I participate in a challenge, register for a new network, pop in for an online chat when I can find time… and when I can remember to do so. There are so many amazing options out there – and I want to be a part of them all because anything that helps educate others about MS gets a star in my book.
Apparently, I have amassed too many stars to always keep up – but maybe too many stars isn’t such a bad thing?
**This is my personal blog and all opinions are my own. I am not a doctor, nor do I play one here on my blog. The content here is for informational and entertainment purposes only and is not intended to replace the advice of medical professionals. Be sure to contact your doctor before trying any new medications/vitamins/supplements, physical activities or therapies **