Lately I've seen a lot of facebook posts from fellow MG'ers (others who have Myasthenia Gravis)... in and out of the hospital, blood infections, more treatments than expected, can barely breathe, etc.
But not too long ago these same people were seemingly doing so well. They were out and about, hosting parties, driving, on vacation, etc.
Then you look at me. I'm somewhere in between those two extremes. Constantly.
Why is this?
Well, for starters, we are all different. I have MG, POTS, Lyme, Bartonella, Adrenal Fatigue, a blood clot disorder, an immune deficiency, a back problem, who knows what else I'm forgetting. Others have a variety of other things. In addition to this, many of these things, especially MG, cause fluctuating symptoms especially fatigue and weakness. But there is something else I want to discuss today, the bigger reason this difference exists as I see it.
Those people I know first mentioned here are choosing to go through treatment. They are choosing to take potentially toxic medications, potentially harmful treatments, or fight hard for a set period of time... all for the hopes of short term remission or improvement. Sometimes it works, sometimes it doesn't. But the treatment period is very rough and the remission or improvement period is very rewarding.
As for me, I have chosen not to do that. There are several reasons. IVIG (one type of treatment for MG) is a huge risk due to my blood clot disorder. I cannot take immune suppressants due to my immune deficiency and lyme disease. I cannot take prednisone due to lyme disease. Plasmapheresis (another hardcore treatment) can only be used on me in emergency situations. Specifically for MG this really leaves me with nothing in regards to traditional treatment.
So what do I choose to do? I choose to eat organic, non-gmo, eliminating gluten, sugar, dairy, soy as much as possible. I choose to stay out of the sun/heat. I choose to control my environment in order to control stressors (stress sends MG'ers downhill fast). I choose to take a billion supplements and vitamins trying to treat things the natural way.
As a result, I don't have those highs and lows. I don't have monthly or sometimes weekly trips to the hospital. But I also don't have weeks or months of remission or improvement. For the most part I remain stable but at a very low level/quality of life. What I can and cannot do still fluctuates day to day or even hour to hour but it is within a range. I know my limits and there are a lot of them. And I choose to follow them.
Neither of these is right or wrong. It's all about personal choice. It's all about quality of life. Do you feel you will have a greater quality of life by choosing to aggressively treat and be in decline for a while and then have a set time of really good days? Or do you feel you will have a greater quality of life by choosing to just do what you can and remain stable enough to get by without these constant highs and lows? Sometimes it's not a choice because lack of options choose for you. And sometimes even if you do choose and go in with a plan, it doesn't work.
All we can do is educate ourselves of all the options and then make the best decision based on all we are presented with. Then we just have to take life as it comes and make the best of it. Sometimes that's in a hospital, sometimes it's at a party, and sometimes it's somewhere in between. Such is life with MG.
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