invisible but very real

During the last five years or so that my precious Grandmother was here, she would have times when she was terribly sick and I would try to get her to go see her doctor and she would refuse, saying she felt too bad to go to the doctor.

And I remember thinking that was about the craziest thing I had ever heard.

Well, today was one of MANY days that I have wished I could talk to my Grandmother, to tell her that I understand now. Today I rescheduled my rheumatologist appointment for tomorrow because I felt entirely too bad – too rundown, too tired, too wornout – to contend with parking, hiking in, sitting in waiting rooms, struggling with uncomfortable chairs, hours spent in pain.

My sweet Grandmother and me in 2010. Oh how I relate to her struggles now.

So, after I rescheduled it, I went back to bed and literally slept all day until time to go pick up Sara.

When my better half got home, we all – my husband, Sara, Henry, and I – loaded up for a few Christmas errands together. Then we came home and ate dinner. And I realized I felt terrible and needed to go lay down AGAIN.

I came upstairs and took my largest round of meds for the day:

And then I decided to lay down for a bit, as my heart rate was running amok. Even lying down with my feet elevated, it still looked like this:

Shortly thereafter I realized that I seem to be having some GI bleed issues again – related to my Celiac Disease – which, combined with the RA flare, explains why I’m feeling pretty rough. So much extra stress recently – disability and oldest child issues – has really taken a toll on my body.

So, tomorrow I’ll be seeing my Rheumy to sort all of this out.

And I’m sure he’ll think of something.

He always does.

I write all of this – how unwell I’m feeling at the moment – because of an experience I had at a local grocery store this morning.

See, I have a handicapped parking decal because:

I have days when I can barely walk with my hips, knees, and ankles (It happens every morning – but sometimes it lasts all day).
Extreme temperatures, particularly heat, sap my strength. I can’t walk any distance in them.
I have two broken bones in my feet. One is relatively new; one is refusing to heal.
I have days – including today – when my balance is off.

This morning, I was going into the grocery store for one item and I parked in the handicapped parking, feeling all kinds of terrible, only to hear a woman behind me say, “There’s nothing wrong with HER.”

#fixitjesus

As is the case with many spoonies, my diagnosis is often an invisible illness. For the most part, I consider this a blessing.

When I go to church, except for the fact I’m having to regrow my hair, unless someone notices my medical alert bracelet, I can usually do my makeup and get myself together and still “be normal”, even if it requires extra pred and a 5 hour post nap to do so. It is so worth it.

However, the fact that I can put myself together to look fairly well for short periods doesn’t mean I’m not quite ill.

When I read this, I cried because it was so true:

It was a big adjustment to need the handicapped parking and to have to suck it up and use the little carts at Target and to consider getting a cane with chair. That was challenging enough. I can definitely do without the judgement of those who have no idea what I’m dealing with.

And it’s not just me.

Often those with invisible illness report that they are treated like they are making up their symptoms or exaggerating and they don’t get the help they need.

They report feeling alone and misunderstood. Rates of depression are much higher than that of the healthy population. It’s an often overwhelming situation.

I’m not going to preach a long sermon here.

I’m simply going say, “Be a good human.”

And, as many of my readers are fellow followers of Jesus, “Be like Jesus.”

There is no need to be so unkind to anyone – as grocery store lady was this morning – and we truly don’t know what other people are experiencing. She could not have picked a worse morning to be so nasty.

Or, better yet, be EXTRA kind to people when you see them in those situations. It will make your day better and theirs better too.

This invisible illness life is not pretty sometimes.

But I’m still fighting on. (Romans 12:12)

#RAisabeast #fightlikeagirl