Myasthenia Gravis is unlike so many other illnesses we know of. Not only is it rare in being known but it is rare in the way the symptoms affect us. This is another reason why it's SO important to get the word out about MG. Our illness is often invisible, but just because you can't see it doesn't mean it's not happening.
Myasthenia Gravis can get worse with time, it CAN. But it doesn't seem to be a proven thing, just something that happens to a lot of us. A lot of other illnesses, you decline over time... you get worse and worse and worse. Other illnesses remain fairly stable, and then perhaps you get cured or at least remission. Myasthenia Gravis is different.
Myasthenia Gravis is not steady. It is not stable. It is not predictable. It is not constant.
It is not a walk up a hill, so to speak as the illness gets worse and worse, and then a walk back down, getting better and better.
Myasthenia Gravis is ever changing! Every patient is different. Every day is different. Heck, every minute can be different! I always wanted to be unique and boy am I ever with this one. Myasthenia Gravis is not only difficult to spell and to say (My-uh-stin-eee-uh Grav-is), it is difficult to put your finger on all together. Spontaneity at it's finest... or shall I say at it's worst. As if life weren't spiced up enough.
What I'm getting at is this... It is super important that family, friends, acquaintances and hows about the entire world, know this, understand this, attempt to accept this, and support us through this.
A Myasthenia Gravis patient often encounters the following, all of which are examples from my own life:
- Being asked if we're doing better- Even if we are, it's bound to change tomorrow, or maybe even in the next few minutes.
- Being told we look great- Thank you, but our looks (unless we are in or nearing crisis) often have nothing to do with how we feel or how the disease is affecting us.
- Seeing us out and assuming we are "fine"- Often we have to "prep" for even a quick trip to a convenience store which means resting for hours or sometimes days in advance and afterwards. We have to take our meds at just the right timing to allow for enough "muscle time" to do whatever we want to do. This very quick moment of time you see us in not a reflection of how we are doing in general, but only a glimpse into a "good" hour or day for us. It does not last and we try to make the most of every one of those moments we have.
- Hearing we are doing "good" and assuming then everything is A-ok- Our "good" is no where near your good. Most of us can't even remember what good really feels like anymore, and so if we are able to do a few tasks in a day, we consider it a good day. Trust us, we wish it could be much much better, but we make do with what we have and try to remain positive, and thus sometimes it is "good."
- Being questioned on why we aren't working when it seems like we can do just fine for ourselves- Inconsistent. Unreliable. Ever changing. Decline after decline after decline. Questionable. Unknown. Would you hire someone with those words as being most descriptive of their work? I wouldn't either. That is not who WE are. That is what our bodies do. We can not last long enough to make it through even part of a work day. Even when we have good days or good moments, we never know when they will come and how long they will last. So many of us try to find things to do, occasionally that might make a little bit of money but typically not- like writing, designing, selling things. Anything we can do on our own time, time that takes much longer to do everything in because of MG, knowing that at any point that "work" could come to a sudden and complete stop due to MG.
- Thinking we have so much time on our hands why can't we make more time to see family/friends- Personally, I have on average 2 doctor visits or something to do with my health (imaging, testing, physical therapy, etc) every week. And then I try to plan one other thing to do per week whether that be getting to a store (no not browsing the mall like I used to pre-MG but rather a quick visit to a grocery store or something for essentials) or occasionally try to visit with someone. Right now I need at least one day in between any day out- "out" meaning including doctor visits. I need a lot of rest breaks not just throughout each day but throughout each week. So yeah, my calendar is pretty set in advance and finding days to get together with people is difficult. I understand you can't completely understand this because its not a "normal" thing for people to do, but it's something we with MG often HAVE to do. We don't have a choice. We definitely appreciate empathy, not sympathy, but empathy. We want to see you, it's just not that easy.
- Being given looks or even being yelled at by a stranger for using a handicap placard/parking space- Here is a prime example of why we need this even if we can bounce out of the car on the way in. We only have so much "battery power" in us and we need to make the most of that. Parking as close as possible will allow us to use that battery power to walk inside the store instead of use a wheel chair. Today I did just that. Before being able to finish I ran out of "battery power" and MG hit me hard. I found a seat and rested. And then I really had to drag myself to make it back to that handicap spot, the first spot in the lot. You can't see how low the battery is in a flashlight until there are some signs that it's about to die. And then its dead and the flashlight doesn't work. We can't let ourselves get to that point or that means hospitalization and possible breathing tube.
The key point here is you can't base how we are doing off of looks or off of how we are doing at any given point in time. Basically you have to take every single day out of say a few month's time, add them all up, and average them out. Then, how are we doing? Very different from that split second you saw us all peppy right before the crash and hours in bed you did not see. Trust us, if we go into remission, we will yell it from the rooftops letting all family, friends and most likely even strangers know it! I myself will probably go back into event planning mode and plan a party. But until then, just take our word for it, and realize we are CONSTANTLY living with something that is not constant. Confusing? Yes. Impossible? No.
My arms are very tired today and I am really pushing myself through these last paragraphs. So I need to stop and I need to rest. How long? I don't know. Do I look fine? Absolutely. If I continue pushing it will the arm weakness start hitting my diaphragm? Probably. Is this starting to make sense now? I know it's confusing. But please just take our word for it. A rare disease with a rare way of presenting itself. It's very difficult and we certainly don't need it more difficult with people questioning us. So please spread the word. Get MG awareness out there!
Thank you.
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