all alone! whether you like it or not, alone will be something you’ll be quite a lot.

sometimes this chronic illness life is ROUGH, y’all.

This is going to be what I call an Easter Egg post, meaning it isn’t going to be circulated on Facebook or anything like that. It’s too personal – and the regular folk won’t understand anyway. This one is really just for me (and any spoonies it might help) – because I’ve had an elephant on my chest all night. I’ve alternated between napping from travel exhaustion and crying. And I have that GROSS feeling that hits me when something is just wrong and off and there is nothing to do but wait for it to pass.

And it is two days before Christmas.

And the damn problem started at family Christmas, for God’s sake.


But it’s one of those things that only someone in this hideous way-too-young-to-be-so-damn-sick spoonie spot can understand.

Otherwise, I seem like just a bitch.

Hell, I probably AM just a bitch too – but I am doing the best I can with this.

So, here’s what happened. . .

Our family Christmases are the best and we propped up my awful foot and drove two hours south for Christmas yesterday.

Let me take a moment to report that the red hot angry inflammation in my left foot has spread further up into my ankle now and the edema is ever present. It seems it may be here to stay. I have learned to shuffle about for short distances most days – but on bad days even that is a no go.

I planned to write about all of this after the holidays – and I will write more later – but yesterday interrupted my plans a bit.

Along with the sudden change in my mobility, some new systemic symptoms of CRPS are starting to creep in – persistent blurry vision at times, my heart rate is again running amok, amok, amok despite meds, shooting nerve pains in other parts of my body. . .

With all of these changes, especially on the bad days, as a disabled nurse who worked in long term care for a VERY long time, I can’t help but feel the fears creep in. . . And, dear God, the fucking anxiety. . . Anxiety for days. . .

Like many nurses who have worked in long term care, I have said before that I will never live in a long term care facility. And I meant it from the bottom of my heart. Of course, I also would not be a burden to my family (I’m already too much of a damn burden to them, that’s just being honest) – I simply know all too well what the facility life looks like and it’s a hard “no” for me.

Where many of us say and mean that for some day, I realized this week that it was scarily closer that I wanted to imagine. Don’t misunderstand me – I am hopeful and prayerful that it is a LONG way away. I’m just dealing with some REALLY frightening medical stuff right now. It’s gotten real, y’all.

So, literally, two days (well, nights really) ago, I had to sit and get my head around how I would handle things if it came down to something like that. And really face scary facts. And I did. And it was awful and panic inducing – but necessary.

Then I set it aside to enjoy Christmas with my family.

Fast forward two days and we are sitting at family Christmas, always amazing.

Our family opens gifts in front of everyone, going one by one, it’s our tradition.

Our mom works SO hard on Christmas and we opened all these beautiful gifts and had the best time. And then we opened stockings – which is like opening more gifts because she does SO much. She just loves us so and wants us to have the best Christmas. She and our GJ Christmas til’ they drop for us. ❤

So then I get to the very last damn thing (I’m so effing serious). . .

And everyone is looking at me. . . And it’s that crinkly medical plastic from my nursing home days. . . And I slowly open it as my brain is processing what it is. . . GERI-BIBS.

If you aren’t familiar, this is a geri bib:

I opened a three pack of navy blue geri-bibs.

Now, the idea was that I am a food spiller – a nice combination of just being clumsy and now having RA hands – so, since I am busty, I manage to send food straight to my boobs fairly often.

When I, having been sorting out nursing home shit in my head two days prior, opened a package of the bibs I have put on patients EVERY shift I ever worked for many years, my heart began racing, I couldn’t conjure up a response – because I honestly wanted to burst into tears and was trying my best not to – and immediately our mom said “Oh, you don’t like them!”

I still couldn’t respond so someone else spoke for me, saying, “Oh, she’s just embarrassed,” which wasn’t the issue at all. I’ve joked for years about my food/boob issue. I had the walls closing in on me and was realizing again how much my situation really isn’t understood – and will wear food in my boobs until my dying day before I wear nursing home gear in my home. It’s a mental block and I can’t help it. My chest is tightening as I type this.

Then another family member abruptly began forcefully and loudly saying, “STOP IT!,” in a manner I have never seen them do before. Very very upsetting. I’m not sure how I would have responded if I had been able to – but I am so not okay now. I will totally let that go – I just need a bit.

It was a complete mess. I felt like the worst person in the world and just wanted to die in a hole RIGHT THERE. Honestly.

After a few minutes, I rallied enough to say, “thank you,” and to go sit down at the dinner table. Shortly thereafter, I went to the kitchen to get something and returned to overhear someone else even saying, “Well, she’ll just have to get over it!”

And I will.

But want to talk about feeling all alone? ALL the fuck ALONE.

We ended up getting it together enough to have a nice rest of our time together – and I am so thankful for that. I dearly love my family. ❤

I am not angry with anyone. They are all relatively healthy people, thank God, and they have NO idea what I deal with or how it feels – so I would never expect them to understand why I am so devastated right now. I will just have to “get over it.”

But I can’t just shake it off right away it as it seems unwilling to leave me. I wish I could. We are two days away from Christmas for God’s sake.

But right now? I just feel so very alone and misunderstood. I’m so tired of this. I’m just tired.

I’ll be okay. I always am. No need to call the crisis team. I’m just in the very lonely place of the sick people at the moment. It happens. . .

Anyway, Sara and I are going to get ready to run to Target and then Christmas service – which I desperately need – and then to meet my parents for Christmas lunch.

And it will get better.

Be well, everybody.

Grace and Blessings.



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