If you’re joining me for the third part of this series, welcome back, and if you’re just joining for the first time, welcome. For a little catch up, Part One was about my initial falling ill and diagnoses, while Part Two was about the first year, and today will be about the second year, 2016. I tried to leave off last time on a high note, because I don’t like to leave people on a low note. But the truth is, the end of 2015 was anything but rainbows and butterflies. So, here’s what was really going on, it was the holiday season, a season I love very much. I’m a watch-hallmark-Christmas-movies in July kind of person, I believe we’re called ‘romantics’. As such, I love to decorate the house, make cookies and treats for work, share gifts with loved ones, and basically spread holiday cheer, or should I say I loved since I’m no longer able to do those things. That’s who I am…was, that’s who I’ve always been. Unfortunately, without energy to do much beyond feed myself and go to the doctor, or money to buy anything, the holiday season was kicking me squarely in the gut. I’ve never been that depressed, not before then, nor after (except for the passing of my mother). I felt useless, I felt like a failure. No tree, no decorations, no gifts for my son or boyfriend. I remember sitting in my therapist’s office staring into the corner at her bookshelf, sobbing, knowing as a young therapist she couldn’t possibly relate, but also knowing that if I didn’t try to get help I wasn’t sure where I’d end up.
For you to really understand, I guess I should share a tiny bit more. I’m one of the only ones, mostly the only one, who physically buys gifts for my son. He has a very large extended paternal family in the Midwest, but they are ‘out of sight, out of mind’ kind of folks. If you’re wondering, what about my family. I don’t hear from them during the holidays, well I used to get a Christmas card from three of them, but last year that dwindled down to two (I probably send 15/20 and have for decades, because tis better to give than receive). So, my son, my boyfriend, and I have been on a holiday island for many years, but that was never a problem, as I said I love the holidays and have spent my son’s life making up for the fact that really, well bluntly, most everyone in our families has chosen not to make us a part of their holiday plans. In fairness, we haven’t chosen to make them a part of ours either.
My point in sharing that with you is this, it wasn’t like someone was going to step in and save Christmas for us. It was going to be awful, like watching a car accident and not being able to stop it. Now you may be thinking that that sounds overly dramatic, and it does (we did still have a roof over our heads and the bills will still being paid), but you need to understand that being sick and unable to work, being broke, and being responsible for another person’s happiness, it’s … well, it’ll bring you to your knees. So, let’s get back to the therapist’s office during the appointment I mentioned above. I told her, I don’t know how to tell my son there’ll be no gifts. She thought about it, and said, “Tell him now, and I think you’ll be surprised at his answer.” So, I did, I waited for the right moment and basically explained to him, through tears, that I had no money and unfortunately, there just wouldn’t be a Christmas that year. And he did exactly what she said. He said, “Mom, I don’t care about presents. I have you, that’s all I need. Presents don’t matter, mom.” I know he was fibbing, because presents do matter, but I understood what he was trying to convey. The load lifted off my shoulders a bit, and one of my friends actually did step in and help, so I was able to get him a couple things online. I guess what I’m saying is, it ended up okay, but boy was it an awful journey. So much so that I still can’t seem to let it go. It was incredibly unfair that I had to go through that partly because of this illness and partly because of social security disability refusing to acknowledge the extent and toll this illness has taken on my life, a system, mind you, I started paying into at 13 years old. I’m not asking for a handout, I’m asking for the money I paid in in case I got sick, back.
Enough about that, let’s move on to 2016. We survived the holiday season, but the heartache and feeling like I was at rock-bottom changed me, probably forever. I stopped caring about some things, lots of things. Maybe that’s good, maybe I cared too much, but I know in other ways it created trauma that I didn’t need to couple with this illness. And as such my health continued to decline. I think when you begin to feel like every time you put food in your mouth, or turn on a light, or use the water, that’s money out of someone else’s pocket, you shut down to survive. You begin to stop caring about food and feel guilty for eating, for being. I’m not a therapist so I don’t even know what that would be. It never went away though. I still feel guilt over eating, especially treats or snacks, as I know they are not essential to my survival. Considering I’ve several deficiencies showing up in my blood work, I know I must eat, I know I need the vitamins and I do try to give my body what it needs, but the guilt is often sitting there, telling me…you’re a burden. If you’re psychoanalyzing me right now, please feel free to share your thoughts. Mine are that this illness sucks, and what it does to you physically and emotionally, sucks even more. With that, let’s move on.
As I shared previously I’d started crocheting, which was really a lifting off point for me, it helped me find a way out of rock-bottom. If I recall correctly it went a little something like this, I started crocheting, and at the same time joined a couple of MECFS groups on Facebook. One day someone mentioned the FB group, Chronic Creatives. I’m shy, but I needed to interact with people, desperately. I joined the group, started sharing my projects, and was absolutely blown away at how sweet these people were in responses to my little tiny projects. I can’t tell you how much I needed the group, the people, it was like a breath of fresh air. There were artists from all over the world, and the talent was off the charts, but no matter who posted what, the response was positive and welcoming. So refreshing. It was there I learned people were calling themselves ‘spoonies’, and it was there that I decided to reach out beyond the group. I’ll share a bit more about that in a second, but first the health stuff.
As I mentioned above, my labs continued to worsen, and in complete desperation, with the help of one of my dearest friends, I reached out to a homeopathic doctor. The homeopath did help with the anemia, I still have it, but I seem to be able to kind of hold it at the gate with diet and iron (which I have adverse side effects from so can only take small doses). She also discovered the genetic mutation, MTHFR, which opened my eyes to a whole different world of oddities my body was displaying, like fainting from folate. My iron levels are still low, nobody knows why. I do eat iron-rich foods. Deficiencies seem pretty normal with MECFS, so I’ll chalk it up to that. I don’t eat a lot, less than 1,000 calories a day of organic whole foods, no dairy, no gluten, little sugar, so I make sure every calorie serves a nutritional purpose, I’m trying. I mean I do sneak in the occasional See’s chocolate, because let’s face it, chocolate is life. Sometimes I feel like my body is just so devoid of energy it’s like meh, who needs to absorb that stuff anyway. Given the rampant malabsorption issues with MECFS, I do believe the science behind malabsorption will eventually be discovered.
According to a chart I’ve been keeping chronicling my health, which is what I’m using to write this series, the other health stuff that year included seeing a medical ophthalmologist, an ear, nose, & throat doctor, and physical therapist number one. Thankfully, my son was still working part time, so he was able to continue to shuffle me around from appointment to appointment, as well as sit by my side at each appointment and speak up when necessary, which was way more often than you’d ever believe. The Ophthalmologist, who I still see annually diagnosed me with blepharitis. My eyes have taken a big hit with this illness. Not only are they often very painful, they ooze (I know sexy, right?), they see flashes of light, they don’t relay information as quickly, so I’ll see imprints of things after I’ve looked away, and often, and especially in a flare, they just stop focusing, usually the right one first. It’s scary because I can’t help but wonder, what next with them? The ENT I saw for dizziness and vertigo, he sent me for vestibular testing, but that testing didn’t occur until the next year, so I’ll save that for next time. And lastly, I saw physical therapist number one for a frozen shoulder, due to possibly too much crochet? My shoulder locked down, and an MRI determined as much. As far as PT, what should have been a several times a week prescription to tackle the problem turned into once a week every couple of weeks as seeing the PT too often was further declining my health. After about six months he released me and when it started to sneak into the other shoulder I did my stretches at home and seem to head it off at the pass. I also continued to work with an attorney’s office on appealing my disability case and wasn’t feeling very confident with them but lacked the energy to do anything about that. You can only herd so many cats when your energy is being spent on managing doctors’ appointments and trying to just keep yourself alive.
In reflection, the year definitely held a when-one-door-closes-another-opens moment. One of the biggest downsides to the frozen shoulder was that I was no longer able to crochet, and I knew I needed to find something else to do, a way to still connect with other chronically ill people via social media, who understood my current path, that were also creative, and uplifting. I remember one day looking at my bucket list, tacked up on my memory board, and noticing that it included taking a watercolor class. I thought, hey I learned how to kind of, sort of follow instructional crochet videos, maybe I could do the same with watercolor? So that year for my birthday I asked my boyfriend for a watercolor kit. He did not disappoint. It had all kinds of things, some of which I still don’t know what they are, and I was off to the races. That summer I began my little watercolor journey. I was clueless, but eager. I had high hopes. I’m chuckling because honestly, I never really did get much better, but that’s never been what it was about. So, after a few instructional videos, a few paintings, and a desire to not have a repeat of the previous Christmas, I decided in December to start an Instagram account solely for my crafts and solely as a spoonie. At first, I decided to go completely anonymous, in case it was an awful failure. My son taught me how to use hashtags to not only search for like people, but also to help gain people to interact with, and slowly but surely my little account became my happy place, my calm in the storm of chronic illness.
It wasn’t too long before I stumbled across World Watercolor Group on IG. They have a daily prompt, and accept any skill level (thankfully), and that became my new hobby. But it was so much more, because it’s pretty much all I do during a day, still. I draw very small doodles, maybe a few inches, then color them in, and post them. They’re nothing special, mostly for fun, but they are me reaching outside my room. I’ve come across some really neat people, from all over the world, to share my doodles, and occasionally on a really bad day, I’m able to reach out for compassion too. The isolation we face with chronic illness takes a toll, and over time, you have to find a way out, no matter how small. Humans need to connect with other humans. I’m pleased to say I’m now connected with chronically ill people, artists, and people who are neither. I’ve been blessed, knock on wood, to not have experienced the negativity some others have and at the same time, found my way out of a dark place. Christmas 2016, compared to 2015, went okay. The boys brought out the decorations, and a few were put out, no tree, but that’s okay, and a few little gifts, it was enough. If I remember correctly my son actually went to his paternal family for Christmas that year, so I knew he’d have a lovely holiday celebration.
So that was pretty much that year, a lot of other things happened with doctors that I won’t drag you through, and life too, but that was the gist. It was a one-foot-in-front-of-the-other year. It held hopes of recovery, or even better health, and hopes for an approval of disability. It saw neither of those, but it did see other things, like the absolute peacefulness that comes with watching watercolors fade out onto the paper like raindrops down a window. I don’t know if you’re ever really in control of watercolors, they move in their own way, in their own time, they are beautiful, and frustrating, and once you relinquish control to them, you find a place of serenity.
Thank you for stopping in today, next time I’ll share 2017, the hurdles, the frustrations, the mind-boggling ER appointment, and the mentality of letting so much sh** go. A few more of my doodles below. 🌸 Thank you for stopping by today, hoping the day has been a peaceful one for you.