It was just six years ago I was non-stop movement. From the time I woke up until the time I went to bed. My house was spotless, all except the boys' rooms. This is no longer the case. Now, waking up, means I must limp out of bed stiff and sore. If I have to be somewhere by 8 then I better wake up by 5:30 because it will take that long before my joints release from freezing up overnight while I rested. I hate that.My mind still goes non-stop. Always active and in need to move forward. If only my body could keep up.
Last week I was reminded of my father. He too struggled with autoimmune hell. His also came on in his 40s. He was a big and strong man. A man who loved his work. Loved being in a union and active in protecting the rights of his co-workers. He took pride in everything he did - then his father died.
I can remember my father standing outside of the funeral home in Evanston, IL. He was looking down at his extremely large hands in amazement. They were turning red and swelling right before his eyes. We would soon learn that the death of his father was the emotional trigger setting off a battle within his body.The battle of his own immune system attacking his joints and organs - Rheumatoid Arthritis (RA).
As his condition progressed he was no longer able to perform the intense physical demands of his job at the factory. He was a lead machinist. He would need to go on disability and he hated it. The first time I witnessed my father break down in tears was when he spoke about feeling like a failure - worried about what people thought of him. A larger than life man walking around out in public during the day and not at work. He worried that they would think he was a loser - because, his autoimmune hell was hidden from their eyes.
Last week I had those same concerns about myself. I worried about what people thought of me. I was taking part in a community response to a fire that left 16 households displaced. I was at a drop off location every day but I was unable to do the physical tasks of lifting, sort, and carrying the donations. The grunt work. I too worried about what people thought of me. I was an autoimmune mess and that didn't help those worries.
I've been sitting here tonight thinking about all of that - finding that I was starting to feel sorry for myself. A slippery slope I do not want to dive down. There are people far worse off than me and I should be grateful for all I can do. I have a job I am still able to meet the demands of - I can take care of myself without assistance but still, I miss the old me. The me that could take on the
world, not only mentally but also physically. Yes, I used to be non-stop - unstoppable.
Not anymore. In addition to the RA I also have Sjogrens, and Raynauds I've written about this all before. They're all autoimmune and they intertwine with one another to ensure that just about any season I am cussing out my own system. A stubborn and opinionated German with conditions where my own body is fighting itself...is not a pretty picture. I seriously don't have time nor the patience for this foolishness.
There is so much ignorance in our society about autoimmune disorders. RA is not typical arthritis. The swelling of the joints is not from friction but rather the fluid building up between them - it feels like they are being pulled apart and there's not a damn thing you can do. The joints turn blazing red and heat can be felt from them. Top that off with a lot of us having allergies, certain anti-inflammatory medicines are a no-no. The only OTC I can take is Tylenol. I could go to a doctor but all they want to do is drug a person up where functioning is pretty much out of the question. Did you know that they place many sufferers on chemo drugs? Yeah, not happening - I lost my spleen many years ago and without that layer of protection the thought of chemo drugs send shivers down my spine.
Sjogrens leaves a person exhausted. Sure, the main features are my body does not produce enough saliva and tears, but that also means severe sinus problems and for me, the parotid gland by my ear gets inflamed - the one true obvious indicator something is not right within me. Lovely, eh? I was at the store today and my hair must have shifted, revealing it, because I saw someone I knew and the first thing out of their mouth was, "Oh no, what happened?" Not exactly an esteem building greeting.
I will pat myself on the back for being pretty good at pushing forward. I have an incredibly high tolerance for pain. That's the German in me...not much will stop me in my tracks except my own damn autoimmune system and believe me when I tell you it is a fight before I cave in.
As I write this I am wondering if I sound like a whiny baby. I sure hope not. I am a purger. I try to purge the negative thoughts and get them out of my system so that they do not add to the battle within me. It is called strategy. Journaling and writing is healing for me and I haven't journaled for myself in a while - I am long over due for some purging.
If you know someone with an autoimmune disorder - listen to them. Try to see past the healthy image before your eyes and hear what they say. Sometimes they will just give clues into their world like they're tried. When they say that it means they are hitting a brick wall, literally. If they say they are flaring but look well, they are telling you there's WWIII happening within their body while they are talking. Bombs of pain are exploding everywhere..you just cannot see them. And, if you get frustrated in trying to understand it all, imagine how they feel living with it -
Be well.
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