“I know this is a temporary state and I that I am strong enough to get through it. Life isn’t always easy, but I’m hoping that it won’t be long before I see the light at the end of this particular tunnel.”
06/08/18 webpage post
I’m on medical leave from work now, which is both a blessing and a curse. For one thing, it has given me way too much time to argue with people on the internet, as you can tell by my previous post. Responding to jerks on Facebook was not the topic I intended to cover upon my return to blogging after a long hiatus! Instead, I wanted to start writing about the reason for said hiatus in more detail. It’s been a long road so far, and I still have quite a ways to go.
I started documenting my health issues in May 2018 after my first sleep study, but the first onset of symptoms was about two years before that. It’s hard to believe that I’ve been suffering in one form or another for over three years now. It’s exhausting in more ways than one. At first I thought I simply had mildly irritating Restless Legs Syndrome (RLS) brought on by a sharp increase in the number of miles I ran every week, but it escalated from there. The “twinges” and “shivering” I felt in my legs when I went to bed at night became full-blown cyclic muscle spasms and involuntary leg movements that completely prevented me from falling asleep. It took me hours to get to sleep every night so I was either late to work the next day or severely sleep deprived. When I finally sought medical help the first GP I went to ran some blood work and told me I was anemic and needed to take iron supplements. Even after I told her that I am a carrier for a blood disorder that contradicted her diagnosis she offered no additional options. Fortunately the next GP I consulted was much more helpful. She initially gave me Xanax (which made me feel sick) and then Ambien as a sleep aid. The Ambien put me to sleep very quickly, but I still woke up exhausted the next morning. That’s when the first sleep study was conducted and my case of Periodic Limb Movement Disorder (PLMD) was verified. What a relief that was. After ramping up on a medication for RLS/Parkinson’s Disease I got a much-needed reprieve from my limbs flailing about all night long.
However, my daytime fatigue persisted. As I wrote back in August 2018, “I can sleep all day, and it doesn’t feel like a choice I’m making. I just wake up in the afternoon/evening and feel depressed that I’ve lost yet another day to my poor health.” This wacky schedule was not at all conducive to being a functional member of society. I started seeing a neurologist shortly after establishing my PLMD to determine the right cocktail of medications to help me live a normal life again. Adding a couple of other nighttime anti-seizure drugs to my treatment (Gabapentin and Klonopin) didn’t seem to make much of a difference, but I faithfully took them anyway. Eventually I broke down and took a 3-month leave of absence from work in order to rest and hopefully recuperate. My third and current GP, who is seriously amazing, ordered more blood work during this timeframe to check for autoimmune markers, but none of the numbers were glaringly out of range. So I went back to the neurologist, but after another (Maybe my 3rd? I’ve lost count.) sleep study in January 2019 ruled out narcolepsy he was stumped. Not a good sign. His last ditch effort to restore my energy was to give me a prescription for a stimulant to help me stay awake during the day. And for a while I thought it worked! Every morning I would pop one of these “pep pills,” as I called them, and I felt like a normal human being again. I was elated! Just before the end of my leave of absence I was confident that although I didn’t have a definitive diagnosis, I was ready to go back to work full-time. I was wrong.
Even with daytime and nighttime medications that were supposed to alleviate my symptoms, adding 40-hour work weeks back to my routine practically put me back where I started. My body just couldn’t sustain 8 or 9 hours of work per day, plus regular exercise, and all of the other stressors of daily life. Even increasing the dosage of my stimulant by 50% wasn’t enough. I was struggling to do the things I absolutely had to do, and I was missing out on just about all enjoyable activities due to my extreme fatigue. Basically, I was miserable. It was hard to explain to my friends and co-workers without sounding seriously depressed, but I felt like a useless human being. I love my job, but I wasn’t pulling my weight there and it killed me. Then outside of work I wasn’t adequately taking care of myself or my home environment due to lack of energy. All I wanted to do was sleep for days, and even then I didn’t feel any better! It was so hard not to beat myself up for these failings, even though I knew it wasn’t my fault. If I had a choice I would certainly not choose to feel this way! Eventually I reached my breaking point again and took another leave of absence from work, and that brings us up to the present.
The bottom line is that something is wrong with me and I have to figure out what it is. I am suffering from some sort of difficult to diagnose chronic illness (or illnesses) and someone, somewhere will be able to help me treat it. I just need to find that particular doctor or facility. So far I’ve been out of work for two weeks. While it’s been such a relief to be able to sleep when I need to and as many hours as I need to, I am starting to feel disconnected with the world. I am lacking a purpose. I’ve been working on finding some comprehensive medical care while I’m on leave from work, but I don’t have anything definitive set up yet. It’s hard to get much done when fatigue is your constant companion. It’s a struggle, but I know I’ll find answers eventually. Being positive isn’t easy, especially on the days where I can barely drag myself out of bed, but imagining a future where I feel normal again and can be the engineer, runner, and friend that I used to be is what keeps me going.