It’s Raining Spoons

While some very stressful things are happening in my non-illness life, MAN have I had a couple of migraine days to die for. Some of the experiences require separate posts, like the fact that despite having moved to WordPress only a week or so ago, I have been nominated for a blogger award (Liebster coming soon!); and that I had the best appointment ever with my “migraine manager” (he is my family doctor, and I didn’t think it was possible to love him any more).

This quick entry is simply about the fact that on Thursday, after a night of very little sleep (because of not insomnia, but circumstances), I was able to help chaperone Zo’s preschool pumpkin patch field trip as planned. I was expecting to have to not attend at the last minute which would have been very sad, but okay: about half the parents come and it is more like hanging out with your child than chaperoning. However I took 50 mg of imitrex for signs of an oncoming lack of sleep migraine, it worked quickly, and I made it pain-and-aura-free through a bus ride, hayride, Miss Extremely Choosy picking out a pumpkin, and the bus ride back in which Zo spotted and processed her first road kill and became despondent. Two hours following this, I was able to go to Downtown Trick or Treat with my family. Either of these events might have been impossible for me a month ago. But that day after a field trip with thirty 3 and 4 year olds I was able to dress up my black cat and clever fox and walk the several blocks to our little city’s pleasant, bustling downtown. On this gorgeous chilly fall day with perfect marshmallow fluff clouds scudding across eternal blue, I was an 8 on the 1 to 10 Happiness Scale with 10 being unimaginable joy that transports you to another dimension. Running into many people we know, normally a dreaded occurrence due to migraine brain and a (usually) perpetually pale ragged face, was a delightful social opportunity. Spoons were being handed out to me like lollipops outside of each spirited storefront, my invisible treat bag bottomless and wide open to receive, my heart full to bursting.

Trick or treat! Yes please! And thank you. Thank you so much.

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Caregiver Burn Out

CRPS Shazz blogged a great WikiHow piece the other day called “How To Understand Someone With Chronic Pain.” I shared it with friends on Facebook, because even the most considerate and loving people in my life don’t get it – how can they?

The last item on the list, screenshot below, just became extremely relevant in my life as my husband yesterday asked me hesitantly if there were any way I would consider taking the girls across town to my parents’ house to stay for a few days. I was taken aback, then felt horribly guilty (more guilt!). He hasn’t slept well in weeks. He has issues of his own, and has even been getting migraines, while caring for me, our two daughters, and a dog. This includes getting food on the table, dishes, grocery shopping, bill paying, homework wrangling, laundry, and his own work stuff which he’s been doing (and neglecting) from home. The poor dog hasn’t been exercised properly in weeks and is chewing things up, the house is a mess, the kids are fragile and fighting while being incredible troupers. We’re all doing the best we can, even the dog. I said, of course, john, I’ll talk to my parents right away.

So here I am in my parents’ upstairs, their room, the girls in my and my brother’s old rooms, my parents in the basement family room pull-out couch. We ate a wonderful meal, and my partner at home trained Asia to “lie down,” re-attached the basement sink and cleaned the sump pump, all this evening. He has many catching-up kind of plans, but all I want is for him to relax and sleep and take care of HIMSELF for a change.

And tomorrow… crossing my fingers for extra spoons. I will be chaperoning Zo’s preschool field trip to the Pumpkin Patch and taking the girls (black cat & fox, thank you for picking easy things sweethearts!) to Downtown Trick or Treat.

Good night from across Main Street, my love.

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I love my dog part 2

It’s amazing how any time I manage to write about something positive, there is an equal and opposite reaction to contradict what I’ve expressed to the world. Because I was down, the night got crazy. Both my mother-in-law and my dad had to come over at different times which worked Asia up. Then she probably didn’t get taken out enough. She certainly has not been exercised properly because we have both have been so sick and stressed and now it’s cold. So Sir took the girls to Meijer since I couldn’t go and didn’t put Asia in her crate, and my door was closed, but eventually I heard suspicious noise and jingling of tags through the Zanaflex veil and stumbled into Alexandra’s room and the dog had of course destroyed her two most precious things and tossed them about and chewed them up. On Zanaflex I get very sedated, and I had deliberately taken enough so I would fall asleep with the DHE and sleep through the night. So having to deal with this level of disaster was impossible. I just wanted to sink to the floor and cry, and I wanted to erase what had happened or at least clean it up but my body wasn’t going to work in such an obedient fashion. I should have FORCED it. Mothers lift cars off their children, I should have willed my body through the motions of cleaning up that room but I shut X’s door and sent Sir a text about what happened and told him to warn her gently, but not let her see. I hoped Asia would get on the bed with me but then it became clear she needed to go out. Now, there was truly no option for me. So glad my pain had diminished, but so sedated. (There is a reason I am very careful with Zanaflex, it is a powerful drug for me.) And now I would have to put on pants and shoes and walk down the stairs with the dog and find the leash and find my coat and take her outside and wait for her to go then come inside and get some biscuits and lead her to the crate and put her inside and walk back upstairs. And collapse onto the bed short of breath and with my ears ringing.

And then, she started to bark.

But I do love my dog. None of that was her fault. I feel like it is my fault but I’m not allowed to say that. People get very upset with me. But Asia would have had her needs met if I hadn’t succumbed today and my daughter’s heart wouldn’t have been broken by, yes, running upstairs and seeing the destruction of her Pokemon card binder and the box which held her rubber band bracelet maker, tiny bright rainbow rubber bands strewn across the floor like every bad cliche ever written. And I heard her wracking sobs and they echoed and ricocheted like bullets. And I cursed myself for every little thing.

Yes, I do love my dog. BUT I HATE THIS FUCKING ILLNESS.

I love my dog

I am having a hard time accepting that I needed to give in today. I am doing better this week, which means “failures” are harder to accept emotionally. Besides having one nearly pain-free day and then easy-to-treat headaches the following two days, I’ve been TRYING. Keeping track of symptoms, medications, special circumstances. Taking less medicine or being sure to take it early enough or conversely waiting long enough.

But now I’m in bed on a day I didn’t WANT to give up, didn’t think I would have to, a perfect beautiful chilly fall day (the worst kind for my migraine) when I planned to be very engaged with my children and to go to Meijer while they were both at school. Yes, for me, that would have been a pretty successful day. A trip to the store is quite a spoon-eater.

I have taken Imitrex for the last three days. Even though the pain was easier, I still treated it. Today if I do I will absolutely get into a rebound cycle starting tomorrow. Even three days in a row makes it likely, but at four, you’re done. Consulting with my migraine coach / partner / husband (aka SirMigraine) led me to lie down and battle it out this afternoon. Personally I’d like to pop my Imitrex like I have for ten years, not thinking about tomorrow, but saving today. But then I would pay for it for weeks with increased headaches and disability and medication use and we are really, really trying to avoid that. I do have a sample Sumovel Imitrex air injection up here if I can’t take it anymore. And you know what, I’m pissed.

But lying next to me, here on the rumpled feather blanket, not too close to impact my range of movement but close enough that I can hold her paw and hear her breathing, is my 15 month old smooth collie rescue dog Asia Dot. I was never a dog person, but Sir and I eventually acquiesced to the idea for our older daughter who desperately wants to volunteer at animal shelters but is too young. X even researched the information herself and filled out her own applications with my approval, only to be denied, which we were prepared for. An eight year old can help take care of a dog, I thought. She would get so much out of it. And four year old Zo certainly wouldn’t mind. Sir thought a dog would be good for my health too, kind of a therapy dog. And here she is. Ironically she and X get along the least well though Asia loves everybody. But she and I have a special relationship. She stays with me all the time, follows me everywhere, to the bathroom and the kitchen and back up to my bed, nervous and awkward on the stairs. She curls up next to me on the couch. She rests her muzzle on my knee, gazing at me with concerned, thoughtful, adoring eyes. When I inevitably go lie down due to pain or fatigue she usually accompanies me, abandoning her busy herder breeding and napping. I am not alone. Isolation is really the most depressing aspect of chronic illness. And yes, she’s just a dog. She can’t rub my neck or tap-tap-tap over the pulsing pain of my head or sing me to sleep or tell me a story. But she is here, quietly, and staying with me for nothing, because she’s made it apparent that doing so is her reason for living, and it is all she wants to do in the world. How can that not warm your heart, slow your breathing, lower your heart rate, soothe your soul? Asia Dot, Chronic Illness Isolation Therapy Dog.

I think my pain just decreased a little. Maybe I can really get away without Imitrex today. That would be amazing.

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Fuck Yeah Fibro Warriors!

http://americannewsreport.com/nationalpainreport/readers-sound-fdas-fibromyalgia-hearing-8822049.html

Migraine Disease also has stigma involved, but I can’t imagine living with all-over chronic pain and also struggling to be tested, diagnosed and treated for a new, misunderstood illness which so recently was thought to be completely psychological. My fellow chronic survivors, you go. You tell them. You fight and get the care you deserve.

Parenting with Chronic Illness: One Mother’s Lessons Learned

After another beautiful mothering comment on a recent post, reading this was like balm to my battered heart. I am not alone.

Chronic Illness is a Journey

“We Are Not Alone and We Are Good Parents”

Parenting with Chronic Illness: One Mother's Lessons Learned

Five years ago, shortly after my second son was born, my life was thrown a curve ball. I woke up one morning to all over body pain, unable to walk. My hands were curled into fists. I was caught unprepared. While I had dealt with unexplained symptoms and pain for a number of years prior, I did not have a diagnosis and my symptoms had never been this severe.

In that morning, I went from being a young mother to being chronically ill. My pain and symptoms were so bad I could barely hold my newborn. I needed my mothering instincts to kick in and I could barely take care of myself. If not for my sister, those first months after my diagnosis would have been even harder.

Uncertain about My Parenting

Even though much time has passed, every now and…

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~ thank you

I am amazed to have followers, in one day. Survivors whose blogs, chronicles of pain and triumph, I had already noticed and admired. The thoughtful comments on what initially felt like a frivolous post (changing the lyrics of a well-known song) show so much caring and community, understanding and acceptance of what is a tremendously isolating and stigmatized condition. I am so grateful and hope to live up to the examples you set. Thank you. ~ elizabeth

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