You’ve got it backwards…

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I’m not faking being ill…

I’m faking being well.

That’s one of the most honest and well put things I’ve read recently. I spend a decent amount of time writing about, and sharing about, invisible and chronic illness/disease, because I’ve learned through my own battles how important that is, for me, to be open about… As I’ve said before it’s not just for attention or sympathy, and it’s not just for understanding either. It’s for a lot of reasons, some very personal, general awareness of these issues, and that many people faces battles we know nothing about… but it’s also about, at least to me, not just to try, in whatever tiny way I may be able to, to remind other people living with and suffering with chronic illness and pain, that they are not alone, there are others out there standing with them silently, understanding, offering empathy, and that they are much stronger than even they can imagine.

Today I realized, either for the first time ever, or just in a different way than ever, that my great “acting” skills, my covering up constantly in public or to people I know of how I truly feel, doesn’t just have an impact on me, or how people see me, or whether or not they believe I’m a liar, or my diseases are not real… it also has an effect on, for example – my boyfriend.

A co worker of his saw me for the first time ever, for about 5 minutes, in Walmart. Very nice guy, very short chat. My days vary wildly in how I feel… yesterday I was mostly tired but OK in some ways but then right before evening barn chores, had to throw up my tiny bit of dinner all over the bathroom, clean that up, and then get up to the barn and was barely able to walk back.

How I feel, and my symptoms, vary wildly not just from day to day, but hour to hour. That’s because of my multiple diseases, but also because of my multiple medications, and just multiple daily things like fatigue, sleep, etc, that also impact those things. So back to this morning. I was not bad. I was mobile and my boyfriend pointed it out – I have been a little more mobile lately. Lately as in the past couple of days. Mobile meaning I can walk and bend my knees. But my knees are swelling every evening indicating lots of inflammation is still active… but I’m also on 40 mg of prednisone still… you see where I’m going with this. Again, so many things come into play with every tiny detail.

So this morning, for a bit, I was “OK.” My boyfriend for example asked if my pain was a bit better. I said it was a 6,7, which to me is low. A nurse at the emergency once told me that was quite high. I was like well usually I’m a 9 or 10 and that’s not in crisis even. I know pain. I’m “used” to pain and living with it all the time. We make adjustments to it. It’s called… survival.

But this morning I was mostly “OK” because yesterday I didn’t move from the couch – that always buys me a bit of energy the following day. And also I was on a prednisone high. When I take too high of a dose (for me) for a certain amount of time, I start dealing with all the mental side effects of prednisone at once: the agitation, anger, happiness, excitement, but mostly for me, this dose, 40 mg, makes me super mentally hyper. Which is great for my creative side sometimes, but also, it leads to a major physical crash.

I become mentally and physically exhausted. I feel mentally like I can write four books, rebuild an entire house, and do a years worth of book work in about 3 hours time… but it’s very short lived. Thoughts rapidly race through my mind and ideas, and I can never complete one or focus. Then I begin to shake, and I literally crash. I start to slur my words first, then forget words altogether, like simple ones, like “the” and “time.”

Then I become so tired, so tired, I can’t even speak at all because of the energy it takes. I wish I was exaggerating. But if anything, I’m not explaining it well enough… because it’s impossible to. The fatigue is completely all consuming, as much, or more than, the pain.

Right where we? Oh yes, at the store, this morning. It was our second stop, I was still holding up. Cue 5 minute intro to boyfriends co-worker, and the last thing he said was, “the way Ed talks about you, I thought you were in a wheel chair or not even mobile, and yet here look at you!” I laughed, completely missing the point – and made a joke… that’s how I always act, or at least most of the time, I’m friendly, happy, and playful in conversation. I miss the point, sometimes, too much. I miss it because of my fatigue and brain fog, and meds. I had to admit I used to be a lot faster and sharper and I know it. Sometimes I act about as bright and fast as if I were stoned… and trust me, I’m not.

But I also have to admit I just don’t pay enough attention a lot of the time. But this time, I immediately got the point. He wasn’t rude about it, he was being friendly, and I don’t think he meant any offence or probably anything bad at all, but it dawned on me right away.

Oh HE missed the point.

Not me.

Because of the 5 minute snapshot of me with my makeup on, my smile, and shopping happily with my boyfriend, he thinks I’m not really that sick, or that my boyfriend is exaggerating or making up how sick I am. That I look fine, and I probably do (although my face is so swollen today from prednisone I look like a helium air balloon, but he’s never seen me before) that it’s not, that bad. I gave up caring a while ago about what judgement’s people passed on me and my health. I don’t pay attention. But it never dawned on me, they’d be judging him too. He sees me everyday. Through every flare, through every symptom, through every Doctors appointment, and I can’t hide any part of my disease from him.

He knows what this life is like for me. And for him. And for Us.

But when he’s telling people that, or missing another day of work to drive me to a Doctor’s appointment, or to the Emergency room again, or to pick up medications… and then they get to see the ghost of me.

The ghost of the vibrant, happy, able-bodied, 30 something I used to be. Well I still am, but just in very short, exhausting, but welcomed, bursts. I get it. I get that it’s impossible to comprehend how someone can be so sick, but yet, sometimes, still so healthy and vibrant looking? I don’t ask for anyone to know automatically or even understand about any of my diseases, or the whole host of diseases and illnesses, that are life long, and often completely debilitating to some people, there are out there. And quite honestly if I wasn’t living this life, I would have a hard time putting that picture together myself. Make up, youth, a smile, these things don’t make you conjure up the imagine of a very sick girl now do they?

My boyfriend was amazed how his eyes were opened and are still being opened to, about what it’s like to be with someone in chronic pain, and sick all the time, trying new medications all the time, waiting at Doctors appointments all the time, getting denied treatments by your Doctors or Insurance companies that might have worked, dealing with constant side effects from medications, constant flare ups, and never knowing when your partner gets sick if the flare will last 3 days or 3 months or 3 years. Constantly scheduling your entire month around Doctors appointments and medication refills, and treatments.

We usually have an easier time accepting or understanding, something we don’t, if we can relate it to something we know or have experienced personally. Chronic disease like Lupus, Crohn’s diseaseRheumatoid ArthritisEndometriosis, Fibromayalga, the list goes on and on… are not things most people will ever have to face for the rest of their lives, nor with their partners, or bosses, or co workers. And for that, I am very grateful that it is hard to understand because they haven’t had to live it up close and personal. If their ignorance is because they have nothing to compare it to, to help them understand, then for that, I am grateful.

Ignorance is OK. Arrogance, or intolerance, or … complete lack of compassion, are not.

It’s OK to think we are faking it. Just remember to pay to attention to, or even feel free to ask if you don’t understand! Which it is exactly we are faking. The being sick, or being well, part.

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