My current status

"It's Complicated."

hahaha! no really, all joking aside, in regards to my health- it really is. It's so complicated that unless you're walking in my shoes, it's probably insanely hard to understand. So today, I'm going to do my best to explain briefly what having these conditions mean for me, and well, also you if you are a part of my life in whatever way.

When I wake up in the morning, more often than not I have trouble breathing and I'm pretty weak. I've come to my own conclusion of why this is. I believe it is because when I'm sleeping I'm breathing very shallow and the oxygen isn't flowing through me as it needs to. So when I first wake up I have to remain laying there and focus on breathing deep breaths to get that oxygen to go through me and give my body some strength while expanding my lungs to prep them for the day. I've asked for oxygen because I know my ox sat drops but they won't listen to me since in the office of course my ox sat is normal.

I shower every other day instead of every day (unless I need to of course haha) in order to conserve energy/strength. Let me explain this. Standing up or even sitting up with my legs down makes blood pool in my legs. That's why I have to wear compression socks. Well, you can't really wear compression socks in the shower. So my legs pretty much turn this not so awesome pinkish purplish color. I shift my weight back and forth to try to help. When blood pools, my whole body gets thrown off and I can faint. Thank God I have yet to due to this and hopefully never do. Heat makes MG worse but I freeze if the water is too cold so I make it warm and try not to spend all day in there. Washing my hair wears down my muscles in my arms from holding them up. I get out of the shower and I'm pretty tired. So pretty much every time I take a shower, I lay down afterwards. And then if I have somewhere to be I continue getting ready after a rest break.

Cooking/laundry/cleaning etc. I try to do as much as I can but I also need to keep a balance of getting help with whatever I can. It's any repetitive motion that hurts the MG such as throwing in item after item of laundry even if it isn't a large load. With cooking or baking I can't do anything for a long time so mixing stuff isn't the easiest, lifting pots and pans and such I should have someone else do. Also the whole standing in one place thing is bad with POTS. With cleaning, vacuuming or mopping would be the toughest because of the repetitive motion. But in general lately my arms have been affected worse than my legs or anything else for MG. That could be because you use your arms for pretty much everything even while sitting or laying. So my arms get less of a break.

Computer/typing/phone. Again the arm thing. I often try to use my laptop while sitting in bed or a recliner with my legs up. That helps prevent the blood pooling with my legs. It also helps my arms be able to sit there and rest while typing as opposed to having to hold them in the air if I'm at a desk. Also with the computer is my vision. My eye muscles get weak and it turns into slightly double vision and also this horrible headache. Phones aren't the easiest because of having to hold my arm up to hold the phone. My arms feel like I had a major weight lifting work out after I get off the phone.. for a few days. Also with the phone my breathing, face muscles and voice are affected. Talking too long my jaw gets super weak and in pain. My voice can get weak after a while but fortunately that hasn't been too bad lately I don't think. But the biggest thing I have to be aware of is my breathing. When I talk too long, or do anything too long, my diaphragm gets weak and if MG hits it hard I will land in the hospital.

Visiting with people. Imagine all the things listed above happening at once. That's why it's hard for me to go out frequently. It's also mentally and physically draining in general. I enjoy seeing family and friends but I have to do so sparingly so that I can actually enjoy those moments rather than struggle so hard through them. I need to rest when I talk so that my jaw keeps moving, my voice keeps working, and my diaphragm gets a break. If I'm standing, I will soon need to sit. If I'm sitting I will soon need to put my legs up. If my back isn't supported, I will soon need to lay down. Sensory overload may or may not hit me and if it does I need to go into a quiet room and do nothing until it goes away. Some lights affect me. Temperature definitely affects me. Fumes and perfumes affect me. Too much noise and commotion can affect me. I can get mentally exhausted as well as physically exhausted.

Eating. It's so important that I eat as healthy as possible. This means organic, non-gmo.. cutting out dairy, sugar and gluten/yeast/carbs as much as possible. I'm planning to write a post regarding this in the near future. But basically all that stuff we call "food" really isn't food, it's poison to our bodies and mine especially. My body is extremely sensitive to everything. I've noticed such a difference since eating the way I do now. And yes, sometimes I give in, but I really pay for it.

Driving. Again the blood pooling in the legs thing, and obviously that happens if I'm just riding in the car too. So if I'm riding I try to put my legs up, or at least crossed on the seat with me. Driving also tires the heck out of my arms from having to hold them up. I also sometimes get motion sickness driving or riding. That just makes me feel so sick for a while. My vision will start to go if I don't get to lay down/breaks within sitting, standing or walking. This means things turn hazy or cloudy or I have a lot of trouble focusing and that headache kicks in. Oh and my neck and back need to be supported because that's my weakest part currently.

So pretty much what this all adds up to is my body can only tolerate a small dose of anything. I need lots of rest breaks... rather I need "breaks" of activity with lots of rest, if that makes sense. I try to do as much as I can, live as normal as possible but this is in fact far from normal. I'm just used to it and I've come to acceptance on it. I still feel so blessed for all that I have and all that I can do. At the end of the day it's not about what you look like, what your physical abilities are, what type of job you have if any, or how many things you can accomplish in a day. It's about you who are on the inside... having God on the inside... and letting Him shine through you through it all.

Thanks for reading. Thanks for praying. Thanks for sticking with me! God bless.