Welcome! Thank you for stopping by to see what’s new in my world. This month I’ve decided to dedicate my Tuesday blogs to sharing the truth about how chronic illness has impacted my life over the last five years. You’re probably thinking…but isn’t that what you already do? Well, yes and no. What I’ve never shared here before is that I often skim the surface of my reality, for you. I’ve always tried to be emotionally responsible with other people’s feelings, and telling the truth here, I fear, would be upsetting or uncomfortable so, I try to keep it light, as best I can, while being as honest as possible. This works fine normally, but it doesn’t allow my true realities to come to light. So, in honor of still being here after five years with this unwelcome guest illness in my body, for the next five blog posts I’m going to let the truths flow freely, as well as share with you how my symptoms impact my life. If you aren’t interested in that and just stop in for my little watercolors at the end, that’s totally okay, just scroll down, they’ll be down there. 😊 Lastly, rest assured my normal posts will resume in August.
For those of you that have been around since the start of my blogging adventure you likely know a lot of what I will share, but as I said before, this might be a little more ‘oversharey’ than normal. With that, you’ve officially been warned, now let’s get started.
Five years ago, this week, I was on top of the world. I’d just finished homeschooling my son, 8th thru 12th, he graduated with honors, and it was OVER…yay! Homeschooling is no joke, folks! It took a lot out of me, but I don’t regret a single moment of it. I was thinking about switching jobs, same field just a different firm (more money). I’d been waiting to get my son out of school before switching employers just in case I had to work overtime (homeschool was done at nights). I was also thinking about maybe going back to college at night to chase after my own dream of becoming a Licensed Marriage & Family Therapist. I was super healthy, or so I thought, happy, and ready to turn a corner in my life. I’d been eating a whole-food, organic, no dairy, no sugar, no gluten diet (you know…the one they recommend for MECFS) for about a year and a half and was feeling great! My fibromyalgia, which I’d had for 10 years at that point, loved that diet and my pain (my only FM symptom) was pretty well controlled. Things were good, life was good.
In fact, on the 4th of July we parked over a mile away from where we were going to watch the
fireworks and enjoyed the stroll like it was nothing. I wasn’t a big drinker, maybe a few times a year, but we drank champagne (in water bottles … shhhhh😉), while watching the fireworks from a picnic blanket on a sandy beach. It was a lovely evening. I had no idea that would be my last time out like that, my last time feeling great and celebrating one of my favorite holidays. Honestly though, had I known, I wouldn’t have changed a thing.
There were signs early on, signs my body was out of whack, things I was ignoring along the way. The first sign started in January. We had a TERRIBLE flu sweep through the house in January. Worst one I’ve ever had, my son actually ended up in the ER from it with dehydration. We did eventually recover but I noticed ever since that flu that once in a while when I would walk at night (I walked every night) I would feel off balance for a step, but then it would pass. It’s actually the way I always feel now. It was concerning enough that I brought it up in my annual physical in the beginning of that year and the doctor referred me to a Neurologist. My first visit to that Neurologist (I’d only been sick with MECFS for a week) was solely to discuss that issue, as I still thought maybe I had a flu. That symptom was eventually diagnosed as a vestibular disorder after some of the worst testing I’ve undergone thus far. Little did I know what was coming down the pipeline. A few of the other symptoms that started to rear their ugly heads were closer to onset: Gerd (air and bubbles were literally bubbling up from my stomach and I still get this especially when flaring), restless legs at the end of the workday, especially if I had to work overtime (same as I get at bedtime now when I push too hard), air pressure build up behind my eyes, which I still have and can actually press and pop out (the air not my eyes 😉), yep yuck, and then finally right before I came crashing down I started to get anxiety, at home and at work. The confusing part? My life, as I mentioned above was transitioning into a great place, so the anxiety wasn’t making any sense. In reflection I can see there were internal alarms going off but being the push-through-it kind of person I am, I just kept going.
And then in July I got a virus, or something. A coworker had been really sick but had come in (grrrrrrr) and she was coughing all over the place and sounded horrible, and I suspect I got her virus. I kept working, you know, as us over-achiever’s do. I felt myself slipping, getting worse. A couple days in one of my superiors suggested I go home. So, I did, and that was my last day. I continued to get worse, and terrified, absolutely terrified. I think I had three available sick/PTO days. As a single mom, no income was NOT an option. My boyfriend and I did/do live together but we have never shared finances, and I was solely responsible for my portion of the household bills as well as my own bills and my son, including food and life. I remember sitting in my doctor’s office sobbing, absolutely sobbing. I saw my life unraveling before my eyes. She thought maybe I just needed some time off to relax and recharge. She signed me out for a couple months and sent me off to several different specialist for the fatigue, flu-like feeling, dizziness, and breathlessness. My labs all looked perfect, I looked healthy, I was just so tired I couldn’t get out of bed, or function normally, I couldn’t drive, I couldn’t walk without feeling like I couldn’t catch my breath, and my brain was oddly foggy. Just to clarify, I went from supporting three attorneys, with thousands of cases rotating through the docket, and homeschooling my son after work, to not being able to get out of bed, speak in full coherent sentences. I was forgetting things I just said, and consistently feeling like I’d just been hit upside the head. Something was going terribly wrong with my body, and nobody knew why.
So that was the beginning. Since then I’ve seen 29 health care professionals and have been diagnosed with Blepharitis, Cognitive disfunction, Dyspepsia, FM, Frozen Shoulder, Hypotension, Interstitial Cystitis, MECFS, MTHFR (genetic mutation), Normochromic anemia, Osteoarthritis, Pernicious Anemia, POTS, Tremors, Memory loss, Migraines, Anxiety, Depression, and Vestibular dysfunction (Central Nervous System and Inner ear). When I began I had one diagnoses, fibromyalgia, and none of the others. I have not had ONE DAY where I’ve felt as well as I did the day before I fell ill, not one. I’m sick every single day. Next week I’m going to talk more about my symptoms, what they are, how they impact my life. My health has been steadily declining, but emotionally I’m stronger than I’ve every been. I’m kiss-the-ground thankful to be here every day. It’s been said that if you don’t heal within the first five years, you’re likely not going to. Well, that breaks my heart, but foundations like Open Medicine Foundation continue to fill me with hope.
Lastly, I know I don’t owe anyone an explanation, but here goes anyway. I’m sure people wonder how I can paint and post on IG as frequently as I do. My drawings are only a few inches. I start them early in the day and work on them for a few minutes at a time throughout the day, otherwise my hands cramp up and start to pop out of joint. They are often the only thing I do that day. If I’m not spinning with vertigo and can hold the pencil and paint brush, I doodle and paint, from bed. There are many reasons why I force myself to continue on even when I probably shouldn’t; I guess the top three are that it makes me feel like I accomplished something, it helps me interact with the world, and so my son and BF will have something to look at after I’m long gone. Below are a few more of my doodles, some are new, some are older (I repost older paintings on IG when I’m unable to paint). If you made it alllll the way down here. Thank you for sticking it out 🌸