Cake walk

I want to address something that has been brought to my attention, that it "must be nice" to not have to work/have so much time/do this, that, whatever. Cake walk is how I will define it... clickbait guilty. But this is important to read.

My simple response: "It must be nice to BE able to work a full time job, have an income and completely support yourself."

My extended response:

It's far from nice...
- to feel pain every single day... sometimes joints, sometimes muscles, sometimes eyes, sometimes head, sometimes stomach, etc.
- to have fluctuating weakness and never know when it will come on or how hard it will hit.
- to start sweating for no reason causing you to almost pass out.
- to have brain fog and short term memory issues.
- to have to have someone else go to the store for you because you can't stand in line.
- to have to miss out on anything that is outdoors in summer because heat makes you rapidly decline.
- to have to skip birthday parties and other outings because someone is sick and you have a compromised immune system.
- to have to avoid certain places or leave because the air isn't circulating at the right temperature and it makes it so difficult to breathe.
- to have a little cold turn into a hospital stay.
- to lose weight as well as gain weight without trying or changing anything.
- to feel nausea more days than not.
- to have to avoid gluten, dairy, sugar, soy, caffeine, processed/gmo foods as you watch everyone around you chow down on pizza and donuts.
- to need someone to push you in a wheel chair if the distance is too long.
- to go from being a cross country runner to not even being able to walk a mile, and it having nothing to do with being out of shape.
- to NEED, not want, help with cooking, cleaning, laundry, changing the bed sheets, driving, etc.
- to have to plan out your week, even your day, in order to conserve enough energy to do the things that mean the most such as church and doctor's appointments.
- to have a disease that is so controversial people accuse you of being a hypochondriac or having "just anxiety."
- to therefore have to pay entirely out of pocket to see a doctor who can properly treat you.
- to have another disease that is so rare most people have no idea how to treat it and you actually fear going to the hospital.
- to have 30 bottles of medications, vitamins and supplements and plan your meals according to how many pills you have to take with or without food.
- to NOT be ABLE to work when you pray every day that God makes you again able.
- to not have an income, or live off disability which isn't even enough to get a tiny apartment.
- all the while, to "look fine" and have no one any clue of all those things you are going through.

What I don't understand is this: Do people expect those with a chronic illness to be a hermit? The reason I cannot live a normal life in addition to everything above is because it is SO unpredictable. One minute I'm fine, the next I have no energy. One minute I'm fine, the next my blood pressure drops and I'm about to pass out. One minute I'm fine, the next I have a throbbing headache and can't think straight. I have to rest more often than do any sort of activity. Resting every part of me- physically and mentally. That is the only way I'm actually able to do anything else. Rest an entire day, go out for a couple hours, rest another entire day, go out for a couple hours. "Going out" isn't always fun, typically it's not. It's necessities. Fun is few and far between but as soon as we do so we get ridiculed, judged, attacked and accused that "it must be nice" or that we aren't really sick otherwise we wouldn't be out. Well, you are seeing us for that short time frame, not the rest of our lives when we prepared for this brief moment before and after by resting. Please don't judge. Instead we really need support.

With that said, I'd like to bring up two things.

May is Lyme Disease Awareness Month. I have failed to do much for this even though I intended to. So, to close out this month I would like to invite you all to watch this video. It was actually created by a 14 year old but is so clear to the point to explain what Lyme is and the controversy behind it. Lyme is actually quite common, in every state, and it can take lives. Please do yourself a favor and watch this. It could save your life. Video

The reason I failed to focus on Lyme Disease Awareness Month is because June is Myasthenia Gravis Awareness Month. And with that comes the MG Walk at the beginning of June. Thus, I have been focusing on fundraising for the walk. Please, if you have not already, go here, click on fundraisers, then my name and consider a donation of any amount. Or you may donate on the link posted on my Facebook page. We need awareness so this judgement stops happening, support to those who struggle through it, and better treatment options with the hopes of a cure.

Thank you for taking the time to read this and educate yourself. I hope that those who accuse the sick of having it "nice" or easy, never get inflicted with such a horrible struggle themselves. Thank you to those who support without judgement or ridicule. You mean so much to us.