There’s an emotional depth with most Chronic illness warriors that you won’t find amongst the masses. We literally struggle and fight to survive, to defend ourselves, to keep going on days when others would be curled in bed wishing their sick day would quickly pass. It’s my opinion that because of the depths we have to go to survive we also learn to know a part of ourselves we didn’t know existed. As chronic illness survivors if we are to continue to warrior on there’s nothing to do but change and with that change comes a new version of ourselves. Our paradigms begin to shift as acceptance settles in on us. For me this acceptance seemed to bring an overwhelming sense of gratitude. Having said that, I’m going to shake things up a bit and say I’m Not thankful for this illness or these illnesses inhabiting my body. Sorry, I’m not. I know many say they are and I totally believe them, I’m just not one of those people. Hold on…I’m not going all ‘negative nelly’ on you. While I’m not thankful for this illness, I am thankful that I’ve been able to find other things to be thankful for despite it all. I’ve always been one to see the silver lining in life, always. My nature is to be thankful but even still my world has changed.
Given that this week is Thanksgiving here in the US and everyone has been sharing what they are thankful for I thought I’d join in and share a few things I’m thankful for now that I wouldn’t have given much thought to prior to being ill. The first thing that comes to mind is social media. Almost a year ago now I created an Instagram (IG) account separate from my original one. My original one had grown quiet as I wasn’t going anywhere or doing much of anything. Well-people don’t tend to like to hear about sick people (sorry you/they just don’t). So I thought long and hard about the name, and what I would actually post (my days were filled with seemingly nothing). I had no idea there was a chronic illness community on IG. I also had no idea how that account would change my life. I knew some people call themselves spoonies so I just started searching for the term spoonie and started connecting and then I found watercolor challenges (something to post yay!) and it kind of lifted off the ground. I did this in desperation folks. It’d been over two years of feeling incredibly isolated, which was beginning to feel horrible. I needed a way out, into the world, I needed people to communicate with, I desperately needed to connect with people who understood. But what I ended up with was beyond my wildest dreams. I found people all over the world, who got it, who are ill with my illness, people of all ages and walks of life, people to connect with but at the energy level I was capable of, which is pretty minimal a lot of the time. I also found artists, who forever motivate me to be better, to do better. And I found spoonie artists who are so incredibly talented and inspiring because I know their hearts are pouring into their work, their hearts and souls. So to say I’m thankful for social media, it just doesn’t really encapsulate my feelings, but I am, I am incredibly thankful, for the people, the connections, the personal growth, for the priceless feeling that I’m a part of the world too.
To further the above, I’m also thankful for the creative outlets via social media. Since starting my spoonie IG account, I then ventured over to twitter, and then even further to wordpress. With each step I had no idea what to expect, I just knew there was more out there that I wanted to know more about. I’ve always loved to write so I thought I’d give blogging a whirl. It’s been challenging, to say the least. I often feel like…what am I doing!? There are so many incredibly talented writers and artists and here I go again posting my doodles and writing something very close to a ‘dear diary’, both of which are very humbling and exposing for my little introverted self. Somewhere along the line I had to come to terms with the fact that I’m just me, like it or leave it. I’m not the best at probably anything EXCEPT being me. My watercolors are never going to wow you and my writing isn’t likely to leaving you wanting more, but maybe I’ll grow on you a little and you will be a little curious what else I have to say. 🙂 What matters is that I have found creative outlets to share with the world, in a way that is currently possible for me and I am so thankful for the opportunity to share in this way. It’s a bit nerve wracking but even still I must like it because I keep on posting. 🙂
Another thing I’m thankful for, but on a completely different level, is kindness of literally anyone. Maybe because I’m moving more slowly through life now, I’m not sure, but I see more kindness and it touches my heart differently. I see smiles, I see people helping people. I see people defending people on social media. And just when I thought the world was going to hell in a hand-basket I’ve learned that that’s not entirely true. For example: Just try to be rude to spoonie on twitter (not really, just giving an example). There are many on there just waiting to open a can of whoop a** on you and I love that people will still passionately defend someone in a social setting. I not only love that there are so many people that are so protective, but I’m so thankful to see it still exists. In this country things are really shockingly unsettling right now. I won’t go into details because you likely know exactly what I’m talking about, but it does me a world of good to know that humanitarians, much like myself, are still out there, we are still fighting for each other and for those unable to fight for themselves. Don’t get me wrong it breaks my heart that there is conflict, anywhere, at any time, but the fact of life is that there is. I’m just thankful to know there are still so many willing to show kindness despite all the negativity being fed to us on a daily basis.
And just in case none of these have been relatable for you here’s one I know many other spoonies can relate to. I’m thankful for my phone, specifically the games on my phone, yep. Before I was ill they were a way to kill time while waiting for something, but now they have become my way to accept insomnia as a part of life, while also doing something healthy for my brain, since it doesn’t feel like sleeping. Seriously though, if one more person tells me I can’t sleep because I’m on my phone, my head is going to spin off my shoulders. 😉 And yes, I have my phone set to night mode so it switches from blue to yellow from the hours of 9pm – 7am. 🙂 What well-people don’t understand is that these little games have gotten me through many a long nights of insomnia and by many I mean 6/7 nights a week. I learned early on that I could stress about being up or I could find something to do until I gently drifted back to sleep. I’ve tried, folks, to just lay their quietly…blah, blah, blah. My brain doesn’t “quiet”. It has a lot of tabs open, all the time, so sometimes you just have to give it something to do and then it realizes it was sleepy and it goes back to sleep. 🙂 Anyway, I’m thankful for this distraction as insomnia is pretty yucky and painsomnia is really just awful.
Lastly, even though this list of things I am thankful for could go on and on, I’ll wrap up with my life. You read that right, I’m thankful for my life. I saw a new doctor recently and he ran new tests, which I had no idea what they were for. Several of them came back positive/out of range and it literally scared me senseless for three weeks. I knew the results as I have access on my phone but I had to wait to hear what they were about until my appointment. My google search used words like lymphoma and I just wanted to melt into a puddle and cry. But I’m a warrior, so after sobbing…on a few occasions, but most constructively at therapy I felt okay. I’m not young, I’ve lived a lot, I’ve had a good life and I decided that each day up until the appointment would be spent appreciating what I do have in my life, not what I could lose, which was life itself. It was grueling. Last Monday I had the appointment. I was terrified. The doctor said that nope it wasn’t indicating lymphoma, he “didn’t think anyway”, and it was just indicating autoimmune disease and inflammation in the body, which we already knew. So nothing new…well, nothing terribly new. I had had some of these tests in 2014 and they were negative so a little new. Anyway, he also said that he believes I have severe fibromyalgia, he doesn’t seem to believe in chronic fatigue syndrome as a diagnoses and he’d never heard of myalgic encephalomyelitis. Sigh… This all is very, very concerning to me but for today, for now, I’m resting with the fact that the labs were not as bad as I potentially feared. I’m thankful to be here, I’m thankful to be able to rest my head a little easier. My heart has journeyed to places I didn’t know existed over the past three weeks and I feel like, again, saying I’m thankful, isn’t enough, it just isn’t enough. I’m more thankful today for my health that I do have than I ever have been before, and honestly I don’t know if I ever really have been before, not on this level.
Thank you for reading along and wishing all of you in the US a Happy Thanksgiving. Hoping the holidays don’t wear you down, I know they illuminate chronic illness challenges. Feel free to comment below on things you are thankful for, or aren’t…really anything you’d like to share, I’d love to hear. Stay strong and fight on my fellow warriors!
A few of my watercolors from the past week from the daily challenge on World Watercolor Group on Instagram. All levels are welcome, come join the fun!