That’s what I consider my chronic illnesses: multiple sclerosis and lupus.
I have decided I need to just call them that.
Someone had used that “DISRUPT’ word to describe them to me just recently and it really stuck. YES. If anything, they DISRUPT my life and they don’t go away. hence the idea of CHRONIC. I’d like to say I’m perfect at being able to ignore them or at least NOT EVER let them get to me. But that would be a LIE. IF ONLY…
I tend to try to go on with my life (you know: get up in the morning, eat 3 meals a day, brush my teeth, comb my hair, shower, socialize a bit more, do some errands, exercise…things like that) especially as I start to feel better or get some relief and then BOOM!; I’m HIT with the next BIG BANG BAD SYMPTOM or ROUND OF SYMPTOMS. Not that I ever stop feeling symptoms like fatigue, pain, stiffness, nausea–you name it. There’s always something going on. Some are more tolerable than others and there are loads of levels of degrees of the intensity of the discomfort. It’s different all the time.
And all of it is COMPLETELY AND UTTERLY UNPREDICTABLE.
With this unpredictability comes the DISRUPTION. The diseases don’t work out a deal with me about when they are going to start flaring up. They don’t let me plan my day. They don’t care if I’m out to dinner with a friend or grocery shopping. They just HAPPEN.
And that to me is by far the BIGGEST FRUSTRATION. They are so DISRUPTIVE. The amount of patience and flexibility I have to have would make me a Super Hero for goodness sakes. Sooo, I just do the best I can with what I have and what I can do at that moment. And I also throw temper tantrums, have tons of feelings about it and try not to punch walls.
Most often I just have to stop EVERYTHING.
“YEAH BUT” goes through my head all the time. “Yeah but I need to make breakfast” or “Yeah but I need to get dressed” or even “Yeah but I need to brush my teeth”. It doesn’t feel like a PAUSE. It feels like a STOP.
The DISRUPTION causes an INTERRUPTION in my flow. What am I talking about? I have no ability to really Flow. I have wanted a ROUTINE for years and it FINALLY just occurred to me that I need to give up that idea altogether. I really just need to know what my Priorities are for me that day, try my best to do those for the day and then IF I can add something else than I will. Laundry and grocery shopping seem to be the most DISRUPTED. They take a lot of energy out of me that I either don’t have or I’d like to hold onto for the day. I don’t like running on EMPTY if I can help it but then again, I CAN’T CONTROL THAT. There is usually NO WARNING.
I’M CURRENTLY DEALING WITH A DISRUPTION OF DIGESTIVE SORTS. I believe about a month ago I had mentioned on this Blog that I was fighting a small intestine bacterial infection and was on strong antibiotics for it. I took the 2 week round of treatment, felt crappy from it (as was expected since it’s a detox) and thought I was done. I had done this before and towards the end a lot of me was starting to feel much better. I did HOWEVER feel nauseous towards the end of the treatment and thought it was side effects from the antibiotics.
Come to find out, I SHOULDN’T have stopped taking the antibiotics at that point because feeling NAUSEOUS meant that the treatment was starting to ACTUALLY FIGHT the infection. That’s what my doctor reminded me of this past Friday after I called him because I had SUFFERED horrible stomach cramps AGAIN. He said the goal is to be NAUSEOUS. (I don’t know about you but that’s usually not on my favorite list of GOALS…). When I’m NAUSEOUS it means I’m starting to actually fight the infection and I need to try to deal with and wait it out. Once I stop feeling NAUSEOUS, then I will be able to start feeling better. Once I’m consistently feeling better with no NAUSEA pangs then I can stop taking the antibiotics…
WELL GREAT. INSERT/SHOVE NEWEST DISRUPTION HERE.
So that’s what I’ve been going through. The past few days I’ve actually felt nauseous so at least now I know the treatment is working. And with nausea, comes less energy and the inability to focus, loss of appetite and things like that. We all know the drill I bet.
AND I just want to point out that it’s not like the body is PROGRAMMED to only accept one DISRUPTION at a time. Ha! If only. I can dream I guess…The reality is that I still have all the other symptoms from both diseases that pop up whenever they seem to want to…
TALK ABOUT OVERWHELMING!!!
I suppose I better stop writing now because I’m starting to feel extra yucky again. One positive I want to point out is that my lupus and MS seem to be calming down a bit and to be a bit less of an issue these days so there is recovery. Thank goodness.
ALL OF THEM SCREAMING AT ONCE WOULD DRIVE ME ABSOLUTELY OUT OF MY MIND! Let’s hope that doesn’t happen…