Howdy, thank you for stopping by! As I mentioned in my previous blog post, this month, in remembrance of my healthier life five years ago, I’m dedicating my Tuesday posts to my chronic illness journey in five parts and this is part number two. We left off last time in the first month or two of the onset of my illness, so I’ll pick up there and cover through 2015. My diagnosis’s at that point were fibromyalgia, anxiety, and depression. Pretty standard diagnoses for MECFS before an actual diagnosis is made. The very kind physician assistant I had been seeing at my PCP’s office referred me out to a rheumatologist, neurologist, and cardiologist. She also continued to sign off on the forms for me to continue to receive short term disability payments, which was like half of my pay. I was beside myself about my loss of income, and I know that exacerbated my illness, as well as being told to keep exercising, despite not being able to get out of bed. However, I thought for sure the specialists would find something fixable or I would just magically get better and be back to work shortly. My work was very understanding and told me to take all the time I needed.
I saw the neurologist first, as I had explained in my last blog, she told me it was likely a vestibular disfunction, because “that can cause all sorts of problems”. I remember saying to her specifically, “It can cause a sore throat? Make you feel like you’ve been poisoned? I feel like I have a virus.” She just nodded, ordered a brain MRI, and blood work. She told me the MRI came back fine (although the second neurologist I saw told me it had white spots on it and it was not “fine”) and the bloodwork had an elevated titer for one marker of Lyme but not all of them, so I was told it was not Lyme. I’ve been Lyme tested again recently through my doctors office with a different kind of test and tested negative. Still, I question that…
The first cardiologist I saw (she was one of five because I continued to have all sorts of regulation issues…for those of you who have an armchair degrees in this illness, much like myself, yep I was eventually diagnosed via a tilt table test with POTS by cardiologist number five, more about that later) said she felt like it wasn’t heart related but urged me to try magnesium, and ordered several tests, one of which was a treadmill stress test. I lasted less than a minute and my chart was marked ‘deconditioned’ which is laughable. I most definitely was NOT deconditioned. Ironically, or oddly, you choose, that cardiologist is now doing a study on POTS patients… But no further steps were taken, except I was told to exercise as much as I could.
And finally, the rheumatologist listened carefully to my list, and then asked me to go sit in his office, like his actual office. He came in, shut the door, and said I believe you have Chronic Fatigue Syndrome. I’d never heard of it. I asked him the usual questions, how do I cure it, what is it, how long does it last. He was quiet, and then he said, there’s no cure, there’s no treatment, there’s no magic fairy dust. He shared that his niece, an avid soccer player, also had it. He then told me to live in the moment, live for today, anything else will not be good for you. It can last 2 months, 2 years, 10 years… My son and I walked out in a daze. Could this really be happening? How did this happen? Surely there was a homeopathic remedy online.
Therein began my journey of MECFS. I’d been sick for a couple months. I finally had an answer, much, much quicker than most. But that answer sparked a million unanswered questions. Questions I still have, questions I’ve cried over, questions I’ve grieved. As we likely all do I came home and began my research, and at first, I was horrified. Do I have a psychosomatic illness? Because at first glance that was kind of what I was reading. But then I dug deeper researching further and realized that no, it was not ‘in my head’, and now I know it’s likely that it’s actually maybe stemming from my gut and the brain inflammation is causing all sorts of havoc on my body, but I’ll save that for another post at another time.
As it turned out, when my employer had told me to ‘take all the time you need’ what they meant was ‘take three months and then we’re going to let you go’. I don’t blame them, I really don’t. They even made a point of telling me when I recovered they’d be happy to have me back. But what that meant was I’d be losing my health insurance. So, for those of you in other countries reading this, what that meant was, all the doctors I’d seen, I could no longer see because the state-sponsored insurance I was about to go on didn’t cover many, if any, of them. So, I had to hurry and get in to see them to get all the testing done and any answers I could before my employer cancelled my insurance. At this point my son was working part time so he could take me to any and all appointments, and that was a HUGE blessing. When my employer let me go they urged me to file for disability insurance that I’d been paying into through the company, which I did. I had never heard of that, had no idea what I was doing, and it was denied. I’ll never forget calling the case worker after it was denied and him laughing at me (gotta love Blue Cross, and by love I mean absolutely loath). I had NO idea that they could even deny it, after all I had paid into it for just this purpose!? So, I appealed thinking they had gotten something wrong, I mean I was so sick I couldn’t drive or go for walks, let alone work, and they denied it again. I can’t tell you the heartbreak that caused me. I literally went into shock. Again, I live with my boyfriend but have never shared finances and he was having to cover all the bills, to put it lightly, it was rough, to put it honestly, it was hell, and only got worse, and spiraled into way worse.
The truth is MECFS often leaves you unable to work, or clean, or do much of anything. You turn into a shell of your former self. But mentally you are still in there wanting to do everything you had been previously doing. And typically, it affects very driven people, so that makes it even that more torturess. When you can’t pay for yourself and someone else is having to pick up all that slack, especially when that is uncomfortable for someone else, it makes you feel like a burden, a heavy burden, even if those words were never used. It makes you feel like maybe everyone would be better off without the burden of your being. If you think that suicide is the leading cause of death of this illness solely because of depression I can assure you, that’s not true. Between the constant body pain, that leaves you writhing in bed at night (and day too), while you’re supposed to be sleeping, the lack of energy to even get to the bathroom (or go once you are there), and the guilt of becoming another person’s responsibility financially and otherwise, sometimes it all becomes way too much. Don’t believe me? Go look on Twitter at people’s feeds before they chose to depart ways with us, they are begging for help, they are in wretched pain, they are homeless, they are scared, they have no way of sustaining life. Pretty yucky huh? This is the stuff I don’t talk about here. It’s uncomfortable, but it’s also our reality.
So, what happened? I signed up for state insurance (Very few doctors want to see this type of insurance patient and as such we generally are given little time, little explanations, and little care. In CA they are trying to solve a part of this problem. ), almost all my doctors switched, and it was a bumpy road. My new PCP was a nurse and she was … totally and completely unqualified to see me for a chronic illness, but felt compelled to act like she knew way more than me, which she did about a lot of other things, what she didn’t know more about than me, was ME. She referred me out to a new neurologist, new cardiologist, and luckily the same rheumatologist. The new neurologist said I looked like I had pre-Parkinson’s, the new cardiologist ran so many tests and told me I had a leaky valve, but I wasn’t ‘that sick’, and the rheumatologist told me I also had pernicious anemia, and general anemia. The year of 2015 consisted of me testing, begging for help from all of them, asking why was I now fainting? What was happening to my body, why couldn’t someone just explain to me what was happening, so I could fix it!?!? But nobody knew. On top of that the neurologist, when asking me to walk down the hallway, told me I walked like an 80-year-old lady and then pushed me forward to see how I’d react, the new cardiologist told me I couldn’t have a copy of my records because he had to “give them to the government” (what the …? I still have no clue what in the Sam Hill he was talking about), and the rheumatologist made me feel crazy for thinking the folic acid was making me feel worse (news flash: it was.). It was horrible. My body, my healthy body that loved to walk, and go to concerts, and be outside my house, my lover-of-life body, was completely malfunctioning, in some weird, unpredictable way. Lights and sound now caused me to feel awful, I felt drunk all the time, I was in pain all the time, ALL the TIME, sitting anywhere other than my bed caused even more pain, I was almost always dizzy, and so much more that continues on to this day. I was scared, and frustrated, and just wanted my life back so I could get back to work and get on with my life.
After being denied disability insurance through my employer, I applied for social security disability as the short-term disability would run out after a year. And it was denied. I couldn’t believe it. I had doctor’s notes saying I couldn’t work. How could this be happening? I had no food money for me and my son, no money, money. As you know, one cannot live without money. My son got a new job, with more hours and I appealed. When short term disability ran out, he took over my car payment (a car I could no longer drive), his portion of car insurance, and started paying for all his own … everything. My boyfriend continued to pay all the household bills. I continued to feel like a chronically ill parasite. I will add this was a feeling I was putting upon myself. I’m as independent as the longest day is long and being dependent upon anyone else does not sit well with me.
I’ll close with the two silver linings of 2015, one of them was that I learned how to beginner-level crochet via youtube videos (I never did learn to read the patterns but I can follow along with the help of pause, rewind, and then pause, and then rewind. 😉) and the other thing I learned was something that likely would not have happened otherwise. The nurse I talked about up there referred me to a therapist. I ended up seeing that therapist every other week for a couple years (I now see a new one). Not for this illness specifically, but to deal with how it feels to have a chronic illness that you cannot control and that leaves you feeling like a burden. How to deal with hating your sick body, but also love yourself enough to stick around, and I’m not going to lie, the balance was delicate at times. Here’s what you need to know – there was NEVER a balance before I got sick. I LOVE life, I love living. So, every other week I’d go in, pour my heart out, cry my eyes out, and she slowly helped me find a flicker of self-compassion within myself. Once I found it, she helped me ignite it into a steady flame. She shared a self-compassion book with me to read. I didn’t have the brain power to read it cover to cover but I had enough to get what I needed. Long story short, when I started the book, I had no self-compassion (possibly how I ended up working myself into sickness), and now I have a steady flame that lets me say things like, no I cannot give OF myself when I have nothing left to give. I’m a caretaker, deep, deep down in my soul, so this has been a difficult journey, but an important one, for that I’m thankful.
Next week, health willing, I’ll share how social media changed my chronic illness life in 2016, and what an absolute blessing it is for me, as well as the next few chronic illnesses that decided to infiltrate my body, and what my actual symptoms are, there are now over 100 that I did not have prior to onset. Thank you for dropping in and below a few more of my little doodles as I continue to follow along with Doodlewash at World Watercolor Group’s, #WorldWatercolorMonth. And if you made it allll the way down here, thank you for sticking with me. 🌸