Social Media To The Rescue

It’s that time of year…love ‘em or hate ‘em, the holidays are upon us!

Personally, I love the holidays, I love the lights, the Christmas carols, the family time, all of it! I’m a big fan, but this holiday fandom has become one of the biggest challenges adjustments for my chronic illness life. For me, the holidays are all about giving, which I also love to do; picking out just the right gift, baking yummy pastries, I’m telling you I was born for this stuff. Unfortunately, my ability to give has been taken out at the knees. It’s this trickle-down effect that I won’t bore you with, but it all starts with energy, because without energy, well without energy there’s very little else to give. The first chronic illness holiday season was downright brutal. If I’m to be completely honest, I cried buckets because I couldn’t give my son the Christmas we were accustomed to. The next Christmas wasn’t much better. The saving grace that year was that I found a group called Chronic Creatives on Facebook and followed along with an advent crochet event, which really helped me feel like I was doing something. When last year’s holiday season rolled around I thought, no, I cannot do this again. Having been housebound for three years, I was hitting record low loneliness levels and I knew there had to be a way back out. I also knew I needed to leave my beautiful memories of past holidays filled with family and traditions behind so that I could create something new in my life, instead of solely mourning what once was. So I decided to embark on a social media journey outside of facebook. In the spirit of transparency, at this point I had to take frequent emotional-well-being breaks from facebook. Watching all my ‘friends’ (I now refer to them as connections because well, yeah) out celebrating the holidays, gift shopping, baking up a storm, decorating their homes, all of it was slowly breaking my heart. So I turned away from facebook a bit, away from those ‘friends’ and decided to take a new unchartered path on social media.

Social media has so many avenues these days but at my age Instagram is the most comfortable for me. Snapchat still stumps me. Yeah, I have no idea why I just can’t seem to figure that whole thing out. Blame it on brain fog… So I created an Instagram account, well a second one as my primary one had grown quiet since falling ill, and was also overrun with holiday’s being celebrated in full swing, as they absolutely should be! I decided to post the different crafts, crochet and painting as well as anything else crafty I was working on. I thought maybe I could find other crafty people, or maybe other chronic illness people. Honestly, I just needed to find people, just anyone I could identify with. As an introvert the thought of putting my less than impressive crafts out there for all the world to see was scary and since I’m the kind of person who definitely gently dips my toe in the pool before diving in, I did this all anonymously. I really had nothing to lose so if it was a bitter failure nobody would ever know. Yes, I over analyze things…clearly.

So, folks, that was a year ago next week! And I’m excited to say it’s been incredibly fulfilling.

I thought I’d share some positive experiences that have come out of my social media journey:

  • It’s easy to quickly take for granted that you can connect with people from all over the world, but wow, that is really cool! To learn about other people’s cultures, traditions and ways of life has been downright fascinating.
  • In society we tend to gather with people in our age groups but on social media you connect with all age groups. I’ve found this to be delightful. People see the world differently depending on what era they grew up in and it’s fascinating to learn people’s differences of opinions based on their age groups. It’s also heartbreaking to see so many young adults that are so, so ill and watching life pass them by. If you are the praying type, these people need your prayers, desperately.
  • If you are the giving type there are people in need of moral support, constantly. Much like myself there are so many chronically ill people reaching out for support that they just can’t find anywhere else. We get each other in a way I would never wish on a well person and social media gives us a relatively safe space to seek out that much-needed support.
  • Speaking of asking for support, asking for help is somewhere below going to the dentist on the list of things I like to do but wow will this community hold you up on your bad days. Knowing that at any time I can post on Instagram and there will be someone there who understands, who has walked in my shoes, you simply can’t put a price on that. Just knowing that resource is there, it means the world to me. I try not to wear out my welcome by being too needy but sometimes you just need a virtual hug!
  • Following along with innumerable artists has been extremely educational and fun! From the little instructional vlogs, which I love!!, to the frequent pictures, you begin to learn different styles that eventually help you find your own. As I’ve mentioned about a million many times I have no art education so being connected to so many people who do is an honor and pleasure! It’s honestly more than I could have ever asked for. And they have been very welcoming and kind considering my little doodles aren’t going to be presented in an art show ever anytime soon.
  • The amount of knowledge available on social media about illnesses is mind-boggling. Something we don’t often realize is that extremely educated people fall ill too. And as long there is breath in their bodies they will strive for information, treatments, causes and cures and they will generously share that information on social media. Let’s put it this way I learned one thing from my diagnosing doctor and that was to stay in the moment. That one piece of advice was invaluable, but I needed way more than that, I still do. The amount of information I have learned, especially on twitter has been incomprehensible. Things like oh your face gets numb on one side too, oh wait a bunch of us have that… Being able to identify with people who get it, gathering knowledge from people who are up to their waists in the trenches too, you can’t put a price on that. I went from being made to feel like a medical anomaly by medical professionals, to knowing deep in my soul that I was one of millions that was being discounted and in that I felt less and less alone.
  • One of the most unexpected things that happened, because you don’t know what you don’t know, is I have had my eyes opened to the enormity of the chronic illness world. You just wouldn’t believe how many people are ill in this world. There are innumerable illness with no cure, that are still mysteries. Maybe I’ve been living under a rock but I just had no idea there were so many incurable diseases in first world countries. What I’ve learned is that it is not the particular illness that defines a chronic illness warrior, it is that they have stared in the mirror with their broken body and they have said not today, body, not today. Today we will push, fight, struggle and do whatever it takes to make it just one more day.

My only regret? That I didn’t do it sooner. I’m no longer lonely, in fact it’s quite the opposite; I usually have a difficult time keeping up with it all. 🙂 From Instagram, to Twitter, to this blog, I’ve actually got my hands full with the small allotment of energy I have from day-to-day. It was scary to put myself out there and honestly to come out of the chronic illness closet. I was pretty much hiding it on social media. Why? I was worried that when I got better nobody in the legal field would hire me if they saw I had been ill when they did an internet background check. But then one day I realized I needed to just take care of myself in the present moment and not worry about what the future holds. What I do know is that for the past year, social media has given me a life line and for that I’m eternally grateful.

“I cried because I had no shoes until I met a man who had no feet” ~ Helen Keller

Thank you for following along! I appreciate you taking your time to read my rambling thoughts. Below you can see a transition from food to Christmas in the daily prompts on World Watercolor Group’s daily challenge on Instagram.

15 thoughts on “Social Media To The Rescue

  1. oasischarm

    It’s nice to find people who can relate on social media. I’ve come across people who understand mental illness and social difficulties and sites like WordPress. I’m also glad that I’ve come across people who deal with different challenges, like you with CFS and another person with a brain injury, cuz I like to understand what other people go through, how they cope with different problems than mine and what their perspectives are.

    The candy cane and Christmas light paintings are adorable!

    Liked by 3 people

    1. Thank you for taking a look! You are so right, it’s so nice to be able to connect on things you may never address in a social setting. Social media allows people to be a little more candid, a little more honest. I’m glad to hear it’s been a positive experience for you too.🌸 And Thank you for the compliment!😊

      Liked by 1 person

  2. Love this post and your list of positive experiences. I too have been super blessed by the community on IG and other social media platforms, like you I also prefer IG. It makes such a difference to connect with people who understand.

    Love your paintings. I want to be more consistent with my art too… I’ll have to go find that watercolour group!

    Liked by 1 person

  3. You’ve certainly had some tough times and the ‘adjustments’ with chronic illness, along with the ramifications others just don’t ‘see’, can be magnified at this time of year. I love this post and how you’ve shown that positive aspects do indeed exist. xx

    Liked by 1 person

    1. You’re so right! The holidays certainly magnify everything. Compared to year one this year has been a walk in the park emotionally, very thankful for that! I think we try and make the best of it, not always easy, but still worth giving it a go. Thank you for reading along and sharing your insight🌸

      Liked by 2 people

  4. Emma (Not Just Tired)

    Wow, it’s almost as if I could have written this post myself, if I were to replace you going on Instagram (and being crafty!) with me turning to Twitter first! I also stopped using Facebook as “me” when I first got ill as I found it draining not being able to keep up with my “old” life. To be honest I also needed a complete break from social media (in that sense) in the early days to be able to rest as much as possible. So I quietly slipped away! However, like you, I’m so glad I started my Twitter and Instagram accounts (in a somewhat anonymous way!) earlier this year. Like you I also restarted an old unused Instagram account and changed the name! My social media friends these days are others living with chronic illnesses – and like you say you can’t put a price on not feeling alone, and/or others understanding your symptoms. It helps so much! Thank you for writing this. I always really identify with your posts xx

    Liked by 2 people

    1. It was a bit scary at first, wasn’t it?! I still grimace when posting paintings that are just not what I was hoping for😬 But people continue to be kind, and accepting. I guess in venturing in anonymously you kind of get to be your real self and when people accept that it feels pretty good. And on another level just finding people who are understanding … it couldn’t be bought, nor sold. Thank you especially for being so supportive on this blog! I genuinely appreciate the time and effort you put in! I saw you weren’t able to make something with your son today, I’m sorry for that. Your son won’t remember though, what he will remember is the time you were together having fun and being silly. So go easy on yourself…you’re doing the best you can🌸

      Liked by 1 person

  5. Yesterday while I was picking up my diapers (grrr I still hate that word), I was doing my “I’m fine with a big smile on my face thing” while I was standing there FOREVER waiting…when someone asked me, “Are you all ready for Christmas?” I’m quite proud of myself being able to make an even bigger smile appear while inside I was screaming “hell no, I can’t this I cant that, I’m broke…yadda yadda yadda” But I smiled bigger and said Yes I am, Thank you for asking. Do you mind if I reblog your post? pretty pretty please with….I’m not sure what to put on top sugar is supposed to be bad for us this week right?

    Liked by 1 person

    1. The beginning of your post brings to mind something I read recently. There is a little boy in GA who was struck by a tree branch about five years ago, his name is Tripp Halstead and his mom does daily updates on his condition on FB. He has a major TBI. She posts videos of him and one day she said, “Tripp should we go change your diaper?” Oh the comment section lit up! Several people wrote in and said call them briefs!! So maybe briefs may be a bit more palatable? Also they are incredibly inspiring if you are ever feeling low. 🌸 I definitely don’t mind if you reblog the post.😊 The other day I was talking to another blogger about how being ill seems to bring about this deeper level of communication style for us. We feel our words, we carefully choose them. It changes us. We were talking about whether it was due to brain changes because of the illness or due to where we’ve had to go mentally to survive. Probably both. Regardless, idle chit chat like oh are you ready for Christmas filters through so many levels and can be so painful but a well person just wouldn’t know, I wouldn’t have known. No an ill person is likely never totally ready for a Christmas as there are about a million things they wish they could have done. Hugs, couple more weeks to go. Thank you for reading along and hoping your day is best as can be!

      Liked by 1 person

      1. Thank you! 🙂 I am so having one of those “I need to go back to bed days” You know when so many little things happen all at once that the weight of them together is unbearable?… Yes it one of those days for sure

        Liked by 1 person

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