Seismograph image found here.
Sheila left this comment on yesterday's post:
..........Wow! Do you ever feel overwhelmed? Just reading about it made me wonder how you stay positive.
It's kind of ironic that her comment about my positive attitude was made on a day that I was throwing another of my I hate my disease hissy fits.
I've been teetering on the edge of a nasty fare for the last few days, and sleeping a zillion hours a day isn't making things better. I'm cranky and grumpy and forgetful and, well.....Sheila....trust me.
I'm not always positive. Some days I'm a literal black hole of negativity.
I hope that I haven't given the impression that things are always sweetness and light over here at my house, because in all honesty they're not. Low energy may make me appear happily goofy in it's early stages, but if I hit rock bottom on the energy meter, let me make it clear that my behavior becomes downright cantankerous before I fall into bed and become comatose for several hours. And when I'm cantankerous, I am irritated by everything and everyone. I hate my body and despise my disease at the top of my lungs.
It's not nice and it's not pretty. Seriously.
Early on, I used to look back on my tantrums and feel guilty, but actually I don't anymore. I have learned that this is something that I need to do - to blow off steam. To stomp and roar and let my frustrations out. I am certain that if I didn't tantrum occasionally, eventually I would explode somehow, kind of like a geologic fault line that lets rip with an earthquake. Hm. An earthquake is actually a very good metaphor for this discussion. I wonder if I'm a subduction tectonic plate? Or a dip-slip, strike-slip, or oblique fault?
I figure as long as I do it in private and I don't inflict mental, structural, or bodily harm to myself or others as a result of my hissy fit, well..... I'm just doing what I need to do to stay sane through it all. I have my moment of rage and then take a long nap, after which I inevitably wake up feeling better.
My point is, and actually I do have one, is that if you feel overwhelmed or angry or frustrated by the changes in your body and life, these emotions are normal. Anyone who claims that they have never had a moment of anger or frustration as a result of their disease simply isn't telling the truth.
I try very hard to have my seismic incidents out of sight and ear-shot of others, so for those that don't see me regularly, I may appear cheerful and calm overall. Don't be deceived, however. I have my moments, and so should you. Head into your closet, shut the door, and yell into the stack of winter coats stashed in there: THIS IS NOT FAIR AND I AM NOT HAPPY! Take a deep breath and let all your tensions release.
Well, take a deep breath if your winter coats smell pleasant, that is...if not find a different closet in which to vent.
A post-hissy fit piece of chocolate is also quite therapeutic.
I think I'm glad that we have earthquake insurance.
5 comments:
Thanks for this post, Julia! Why, I was just having a foul-mood-day yesterday--my POOR husband! Sheesh. But I do get so so angry at times, and indulge in glorious pity parties at least once a week. Good to see I'm not alone.......
Julia, how appropriate this post is. I am going through a hellish summer with lots of pain in head and neck and having pain and trmors in my arms and legs, and getting nowhere with my doctors. Last weekend I was in so much pain,I thought my head would burst open and I just sat down and started crying.Now, I cry easily when I watch the news/read sad stories, but I NEVER cry for me. After the crying, I started to feel REALLY ANGRY AND FRUSTRATED at what I was going through, at the doctors who weren't much help, at my financial situation.....nothing was spared.
I did feel better after that, I was able to cope and see to what meds I should have taken to ease the pain.
No matter how good your support system is, you are basically coping alone with your illness, something you notice when you're going through a particularly rough time.I want to thank you for always giving us, your readers, a helping hand and a comforting shoulder whenever we visit your site. I know you have helped me enormously. Sorry for the long diatribe....I needed to vent!!
Whew! I was beginning to think that I was the only absolutely 'off my rocker' at times.
It can be hard when others don't get it... of course most of this I don't share. My husband has his opinions and for the most part he doesn't get it at all. (he is trying-but clueless)
I am hating my new problem... insomnia. What??? I am dog-tired most of the time... almost relieved at the thought of sleep... then I lay down... and wait two hours or more until sleep comes. Why???
I love naps! (when I get them) Sometimes I have to have them... I get physically ill if I don't stop whatever I am doing and rest.
Thanks for letting me know that it's ok for me to be unhappy about all of this.
ToOdLeS.
Don't forget mom, we have a ton of nerf guns and a bunch of targets in the backyard!!!! :-D
Julia, so sorry to hear about the flares and moods. We call those episodes "eyeball washes." My friend and former doubles tennis partner (still playing competitive tennis at age 80) gave me some advice earlier this year that has been useful.
When her daughter was diagnosed with breast cancer she said, you give yourself permission to have a 15 minute eyeball wash session every day and use that time to cry, rant, rave, feel sorry for yourself or whatever else you need. After that, you paste a smile on your face and get on
with it as best you can.
Well, I confess some days I've needed more than 15 minutes and/or more than one eyeball wash lately for reasons beyond Sjogren's, but giving yourself permission to collapse without guilt is really amazing and when your family can allow it as well, it's very therapeutic.
The allowed eyeball wash plan allows everyone to get on board and let it go.
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