So, I’ve had friends and family ask what having autoimmune diseases means for me. Aside from multiple doctors, constant appointments and medical tests, and crazy drugs, what does it really mean on a daily basis? I decided to summarize my answers here, and I may update/change as I articulate things more clearly.
- I have a poor immune system. I get sick easily and stay sick longer than most people, and there are many factors that seriously compromise my resistance to illness (travel, stress, allergies and female concerns all weaken my immune system further). I fortify my immune system using diet, supplements, adequate rest, and when I can, exercise. Good hygiene and avoiding situations where I can contract illness as much as possible (extra precautions when travelling or stressed, for example) have helped a lot. I now only get really sick once every three months for a week or so. This requires me to be vigilant and as consistent as possible in my daily health maintenance, but it is entirely manageable. I cannot have preventative flu shots because they make me terribly sick. Please don’t argue with me about this- I know from experience.
- However, my immune system is a paranoid sociopath, and spends its time attacking parts of my body that mean it no harm. First, apparently my thyroid walked too close to the property line one time too many. Then my immune system started leaving threatening messages and a suspicious paper bag on the doorstep for the tissues around my joints. It is entirely random when my autoimmune system will suddenly kick it up a notch or slink back to the basement for a few days or weeks to mutter and paste newspaper articles all over the walls. Various things can trigger an attack, but rarely consistently. Daily medications help keep it sedated. Cold or prolonged rain make it particularly cranky and likely to lash out. Managing my autoimmune flares is almost entirely reactive.
- The primary side effect of my autoimmune issues is chronic joint pain, which is managed with all of the above plus some heavy-duty muscle relaxants and steroids as needed. Thankfully, I have needed these less lately. I do still have bouts of intense fatigue, which is additionally impacted by fluctuations in my thyroid and anemia. Managing pain and exhaustion is more an art than a science, and is the most frustrating part of this whole situation since what works one time might not help another, and I can do every single thing right and still have a bad flare that lays me out for days. It is capricious at best.
All that being said, and even with the weirdness lately with other issues, I have been feeling much better the last couple of weeks than I have in months. My daily pain levels are low or non-existent, and I haven’t had to take anything for arthritis pain in several days. I am staying up a bit later and being a little more social, and even though I wrap myself in a cocoon of comforters at night I have mostly been sleeping well. My first round of tests for the mystery bug came back refreshingly normal (well, normal for me), so now we’re just waiting on the other labs for confirmation, and the “emergency” meds were tested for the first time last night and seemed to work like a charm, so yay that! I am planning some really cool things, which I’ll post about soon. (Teaser!)