Suffocating from the inside out

First, just to clear up from that title, I am not nor was I suffocating. I'm ok.

Second, to get to what that title means.

Yesterday, I had a doctor's appointment at 12:00. I got there early as I usually do. I handed in my paperwork that I filled out at home (they knew I was filling it out at home) then I waited. At 12:15 the nurse took me in, so I was already waiting about a half hour but that's to be expected at the doctor. She briefly went over a few things, took my blood pressure, then in her words "I'll have the doctor come right in." RIGHT in. Well, "right in" meant an hour later, 1.5 hours later if you take into account my appointment was at 12 but he didn't come in til 1:30. No apology, explanation, nothing. I understand sometimes things happen, but here's the thing. When I was in the waiting room I heard the receptionist say something to my nurse about 1:30 and at that time the nurse took in a different patient before me even though I arrived first. My thought is they knew I wouldn't see the doctor til 1:30. Why on earth would you give me an appointment time of 12:00 then? And if something came up, why not make me aware??

So anyways, once the doctor finally came in he spent about an hour and a half with me. He was very thorough which was good. BUT I started fading out before he even got in the room and especially once we started talking. And then after my visit with him, the nurse came back in and went over some stuff with me. Total time in the office was 4 hours! To any healthy person, you'd be thinking geeze that's a long appointment or that's ridiculous or I won't go back there... something like that. But to me, it's different. I brought magazines, I can hang out and do nothing and be fine with it. What I'm not fine with is my body not being able to tolerate that. "Just sitting" wears out my muscles. "Just talking" wears out my muscles. "Just being alert" exhausts me.

So getting to the title of my post.... when you have MG and your back/abdomen/anything surrounding the diaphragm or the diaphragm muscles get tired... that is putting you at risk of MG crisis which is basically suffocating from the inside out. With MG the more you use a muscle the weaker it gets and less it works until it is pretty much paralyzed for the time being. That doesn't just happen with arms and legs. That happens with face, with swallowing, and with breathing. When you use your diaphragm muscles too much or too long, it gets weak and breathing becomes very labored. If it keeps up, your diaphragm will stop working, ie. you suffocate to death from the inside out. This is when ventilators are used and plasmapheresis comes in due to crisis. But sometimes they don't work and sometimes it's not soon enough. Sorry to be so blunt, but then again I'm not sorry because I'm just telling the truth and people need to know it. I still don't think people realize the seriousness of this disease.

So after the appointment yesterday and all day today I am laying down. I don't lay flat during the day because that makes it harder to breathe too. But I lay with my legs up and back resting on pillows. If my back is not fully supported (meaning not doing the work on its own), like yesterday in a chair at a doctor's office, it goes weak, quickly. Now I have no choice but to do nothing and lay here. I have a choice- I could do more- but I almost guarantee I'll be in the hospital if I do. I have aquatic therapy tomorrow and I hope I regain enough to be able to go.

This is one very big reason why many people with MG, especially MG that has not been controlled due to medication sensitivies/side effects, etc, cannot work. We look fine. We are fine... for a few minutes to maybe a couple hours. Then at any point in time from many different factors- talking, walking, standing, sitting, smiling, typing, reading, being stressed, heat, medication, or maybe nothing at all- our bodies take a turn for the worse very quickly and sometimes very severely. And "recovery time" can take days or longer. This is why we HAVE to take it easy and be pro-active rather than re-active in our disease. Being re-active could be what determines life vs. death.

When you're sitting at work complaining you want the day over with, when you're on a phone call for hours with something that won't get settled, when you're walking or running to exercise, when you're chewing your food without thinking twice about it, when you're driving, when you're doing anything... today I ask you be mindful of what it is you are doing and appreciate that moment. Appreciate and value that you CAN do those things. You have the ability to do it even if you don't want to. And doing those things for you isn't a matter of life or death. You are blessed. Remember that. You are blessed. And I am too, but I have to live my life a little differently.

Thanks for reading.