Cross posted from my online journal - I hope that's okay. I wrote this yesterday, but wanted to share it with other people who know EXACTLY what I'm talking about.
My sister and I had gone shopping yesterday and upon arriving home, I laid down. The two and a half hours had wiped me out, to the point where my breathing was labored. My sister and boyfriend were putting up groceries and said "It's okay, she's gonna fall out here in just a few minutes anyways. She needs to rest, so we will just let her rest."
And for a second, for the briefest of seconds, I was offended. I am not a delicate flower that needs to be gently set down lest its petals get crushed. I am not an invalid.
But then I realized they were RIGHT, I WAS going to fall out in just a few minutes, and that's EXACTLY what I did. What I had to do. I had to just lay down on the bed and rest. I was so tired I could barely talk. I didn't want to rest. I wanted to join in on the conversation, to move around, but my body had just plain fallen down and wouldn't move an inch further.
And that's now part of the routine of living. It's built into people's expectations. It's part of the plan when planning things. This is supposed to be a good thing - and I suppose it IS. It means we are allowing myself and my body the limitations it now has. We are learning how not to overtax ourselves.
But it also means the disease is familiar. Like it's been accepted somehow, though for better or worse is always a coin toss. Some days it feels like a healthy acceptance and other days less than a healthy acceptance. Y'know, a "This is just you learning a new normal" versus "Your body is broken, therefore you are broken" sort of acceptance. It goes back and forth.
Somehow, that comment - made offhand and without any ill intent at all - made my lupus far more real than anything else has. It's always the small things that drive the big things home.
Anyone else had that happen? Where something truly small was what 'brought it home' that you were seriously sick???
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quirkytizzy
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I think I'm so used to dealing with people who don't understand, at all, about the disease and who make ridiculous comments, that the ones that come from a person who does can often catch me off guard and I don't know how to take them.
My husband, who is a real blessing and understands more than anyone else, sometimes makes a comment like 'Oh it's just Emma (me)' when referring to my need to sleep in the day. This doesn't sound offensive and certainly isn't intended as such, but I get really hurt by it and have had to explain to him that it may look like me, but it's lupus, and without it I'd be running around active all day as evidenced by my activity in really good years.
I should probably accept it as a part if me, and to some extent I do, but I don't want it to define me and that's what I get upset about.
Thanks for posting about this - it's made me think!
What a wonderful post, QT...deeply felt and well spoken
You've reminded me of a story a lupus acquaintance told a group of us recently...something like: when I get grumpy my family & friends know to tell me it's time for me to go take a nap
She was being humourous about this, and we all smiled...but at the heart of stories like hers & yours is a kernel of harsh reality, which is life with lupus 😏
Thank goodness for this wonderful forum: we do tell it like it is, and meanwhile we grab all the chuckles & laughs we can get 😉
I've had this moment when the last OT came to see me, and assessed me for a walk in shower. But she didn't just give me that; she got me a rise recliner, she got me a bidet-toilet (most expensive one on market), and a bunch of other aids and support. I honestly thought at first 'Come on! This is for really disabled people! I can walk around...sort of! I can bend over...once, maybe one day out of three! And I'm only kind of incontinent...
Oh.
Erm.
Right.'
Totally get you. But I'm now taking that as a hint and a clue that I can't ignore it. I know, I know, don't let illness define, blah blah. But I am not going to blatantly try to stick my head in the sand and ignore it, either - this is my life now. I can't get hung up on 'old me', and I can't force myself to try and do things like I used to in order to feel validated in illness-denial. What one person can do, I certainly cannot. But that's ok. If I'm using aids to minimise 'spoon use' and suffering so I can be pain free and have more energy for things, then I do it. I have a powerchair; I love it. I have robo-crutches. They're awesome. I have a ridiculously high tech toilet so I don't have to struggle anymore. Fab. Sometimes I still struggle with it, but I'm getting better about it.
For me, it was the first time my son pointed out that I was mixing up my words. He is only nine and didn't understand how that would make me feel, but that was the day that things really began to sink in. It felt like everything else could be managed with meticulous planning, but the brain fog has just refused to settle. I'm very introverted, but love a good debate, so my mind is my biggest treasure. To lose the ability to communicate is thoroughly heartbreaking, and every time he points out that I have constructed a sentence incorrectly, or used the wrong word altogether, my spirit breaks just a little bit more...
There isn't that much that can be done to help the brain-fog of any autoimmune disorder - but it is a bit like wearing a body-warmer even in summer to help keep your hands less cold when you have Raynauds: if you indulge in ALL the PHYSICAL aids on offer, even if you only need them a little bit, it sometimes helps the other bits too.
This summer for the first time I requested airport assistance. In a small airport where you go straight through immigration I don't need it. But when the plane docks at the furthest gate in one direction - and baggage reclaim is at the furthest carousel in the other direction and there are escalators up and escalators down and a queue for passports and then when you get to the Terminal there is another walk to the carpark? Or if you may have to rush to make that connection BECAUSE of the queue at immigration? Then I do. And I was amazed at how good I felt when I completed the journey. So I shall be requesting it again in future.
You're absolutely right. I find that I have to ask for help a lot now, or things take twice as long as they should. I've always loved puzzles but I am becoming quite obsessed with sudoku and word searches, in hopes of improving my brain function.
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To PANIC or not to PANIC that is the question
Feeling unlistened to. 
Some things that have helped relieve my symptoms
Thought this was so right had to share! 
