I’m packing to go to our first family reunion of the summer. I’m packing my coping materials and I realize I have no idea how to break it to my family that a doctor diagnosed me as crazy person. I am as ‘the family crazy’ as it gets. We haven’t told anyone on this side of the family about the last 6 months. I have not been in a making phone calls and sharing mood. If I have a melt down an explanation is going to have to be made. “Oh, well. Hanging in there. On top of my pain and epilepsy troubles, now I hear voices, I’m psychotic, have clinical depression, anxiety, and a serious fear of knives. How have you been?” Yup. That about covers it.
Category Archives: family
My relationship with the floor is the only thing that I know won’t change with time. Like an old friend, our relationship won’t fade. When I fall, the floor will catch me.
When I was a drama student I had to learn to fall. Stretch, relax, breath, and now fall. Up and do it again. And again. And again. Until it doesn’t hurt. There is an art to falling. The key is to commit. Commit: do not to try to catch yourself. The floor will catch you. Now you can learn to direct your fall. Fall safely, the floor will catch you. After you’ve learned how to fall you put the fall into the lines. And the stage floor will catch you.
After I learned how to fall I put it into practice. If I started to fall I just fell. I was less likely to get injured if I committed to the fall. When my body changed I lost the ability to fall safely. I don’t have the control over my muscles, I can’t make them relax. But, the floor is still there to catch me.
I knew I had a solid bond with the floor a few weeks after I started having pretty regular seizures. I woke on the floor. I knew I had just had a seizure by the looks on peoples faces. I said, “hello floor.” I couldn’t ask “why am I here?” I knew. I couldn’t ask “where am I?” I could tell by looking around. Then I looked at the scared faces and said “I’m alright.” The floor was there to catch me.
The floor is always there to catch me.
The floor is always there to welcome me back.
I went to a family reunion this weekend. We always go a day early so we have time to spend with my Great Aunt. One of my cousins is a drama queen. This time she was milking for sympathy because she was diagnosed with chronic migraines. She had her first in April and was diagnosed shortly afterword. We had a short dialogue about her first migraine, her doctor, and medicine. Most everything made me think, wait what? I told her it takes patience, cooperation with her doctor and faith in her medical team. She reminded me that she actually has a life, a kid, a job, still in her 20s and I don’t have any of those things.
I staring at this girl in amazement. I couldn’t find a shred of sympathy or compassion. That made me question myself. I know what its like to be blinded by the pain and my migraines last for several days. I know her pain. I remember how hard it was when it first started in my 20s. I thought I should feel sympathy, logically it is the correct emotional response, but I didn’t. I pitted her lack of understanding and was disgusted by her attitude.
I figured it out. She wanted compassion from me while trying to one me up and hurt my feelings. She wasn’t asking me about migraines or coping at all. She told a story about her last ER visit, she stared at me. My last ER story was 10x better, I could have also pointed out why she was treated so horribly. I didn’t say anything. Her last doctor appointment. I didn’t say a thing. Her job. Silence. She was aggravated. Yup, this was definitely a pissing contest. She was baiting me and showing off. I was pissed.
I believe that these pissing contests are toxic. I don’t like it when someone tells me I have it worse off or someone has it worse off then me or at least its not cancer. We shouldn’t get stuck on who has it better or worse off. We shouldn’t compare suffering. When we do we loose chances. We can learn from each other, confide in each other, be friends or mentors. We can’t be those things if we are stuck in a pissing match.
MHAM Day 10 Topic: How does your pet help you manage #Migraine or #Headache?
This is Karma. She loves walks, sitting on the porch, digging, treats, and being petted. Sometimes she gets hyper focused on one family member. Usually that family member is not doing well physically or emotionally. Karma will stay by their side, guard their doorway, and put her head or paw on their leg. Sometimes she talks to them. And she mopes. Ask her “Do you need?” and she will stare at the person or the person’s room.
She tends to know where I am all the time. “Karma, where is Crystal” or “Karma, find Crystal.” She will run back and forth between me and the person looking for me until Karma is satisfied the person found me. Sometimes Karma says “hey come see Crystal.” There was a day I fell and could not get up I was so dizzy. Karma lay down and stared at me for over an hour not moving. Karma herd the car pull up, ran to the front door, and started barking. I herd the door open then Karma’s paws sprinting down the hallway. She paused in the doorway. Mom had not gotten the hint. She sprinted off. She came and went two more times. The third time she barked at Mom. Then Mom came and the “Crap Crystal is sick” routine commenced. Since then we taught Karma everyone’s name who lives in the house.
Other phrases Karma learned was “Name, doesn’t feel good” and “Go to, name.” Both phrases result in Karma finding the person and giving them loving or begging for attention. Having Karma to pet is soothing. I don’t know what it is about simply running my hand through her fur. Another thing is I can match her breaths to get into my breathing exercises if the pain is so bad I’m having trouble. She can be a confidant. I can tell Karma anything and know she will not treat me differently. “Karma it hurts to much.” She will still ask me to throw her rope and give her treats. Another funny thing Karma does is smile when she is petted (I read that is backwards, dogs usually smile to get petted). It’s feels the same as making someone smile. A little positive emotion boost when the pain is a killer is nice.
For more blogger’s posts about this topic go to (http://www.migraine.ninja/2017/06/10-pets-can-sense-and-comfort-during-a-migraine-or-headache.htm) and look down in the comments.
I started feeling non-stop pain in March of 2005. A few months ago I had an altercation with some light monsters. At my doctor’s appoint last month we decided that an episode of extreme light sensitivity should be avoided. The pain doctor prescribed me Naproxen. He explains to take it as needed for when it gets bad but no more than 2 pills a week. I get the bottle and there are ten pills inside for a month.
I did not ask for these. I felt like the pain had defeated me somehow. I’ve gone about 9 years without any. To me it’s huh, this sucks. To others’ it’s, yes finally; something you should have been taking for a long time now.
I take one pill and sleep for the majority of two days.
It’s great. Sleeping through an awful migraine is nice but I miss out on everything for two days but the chances of enhanced sensitivity are stronger now but I have to take medicine. Weird toss up.
I feel like I have to report to someone. “Hey, I’m taking a pain pill.” Or I wait until someone tells me to go take one. I don’t know when I have reached the threshold of go take the pain medicine. And then I write it down so that I don’t accidently take more than two that week. It is weird internal dialogue.
I believe the most important thing is that the pills brought relief to my caregivers. And we are thankful for the ability to be proactive instead of solely reactive to unbearable pain levels. Hopefully, we won’t have to go back to the ER for a long time.
With so many doctor’s appointments and treatment plans to follow, people with pain have so many decisions to make and serious conversations to hold. Today, let loose and do something silly and fun! Share a picture of your enjoyment, despite your pain condition. Share a picture of today or a day, evening, trip or adventure where you were able to forget about your chronic pain condition for a moment and just have fun!
In the picture is me, two sisters, and my brother. My sister’s boyfriend took the picture. My brother got to come home for my Gramma’s funeral in late February. The day before his flight back to the Netherlands the five of us went out to play. We ate, drove out to Wollersheim Winery, and spent the night playing board games and Wii sports. I had some balance issues that day but it didn’t discourage us. I was passed around as we frolicked about. “Hey, whose got Crystal?” was probably the most said phrase that day. I think during our adventure that we all were able to forget our pain for a while.
Day 17 is to check http://www.mychronicpainteam.com which I already talked about in “online communities” a few days ago. But I accidentally skipped day 10 and its nice.
Gratitude journaling is an activity designed to help a person become happier and more grateful. Despite your downs their are good things happening. Consider starting a journal or one entry. Write three positive things for every negative moment. Remember to focus on positives that sparked a happy emotion today. The idea is to train yourself to see gratitude-inspiring events and the things happening around us that makes us happy even when it may seem like there is nothing to be happy about. All about improving our mental health.
- I didn’t sleep last night because it hurts to much.
- My niece allowed me a two hour nap
- My niece and I made birthday cards for my Mom
- I was well enough to use the oven to make dinner
- My niece trashed my room.
- Niece did not spill glue on the carpet
- We watched The Ewoks Battle for Endor movie with her mommy
- I learned a new way to lace my converse shoes and they fit nicer
- I hurt way to much for babysitting today
- I started a pineapple crocheted scarf that is super cute
- My niece’s reaction to the reality of “yes its just you and me today.” She asked how my head was feeling, glared at me, slumped off, and then about an hour latter came back with an activities list she would enjoy that she believed I should be able to handle. She is eight.
- Karma came to cuddle for a few minutes. She usually only cuddles with my little sis.
An awesome article by blogger Stacey Philpot about reaching the importance of that person(s) who treat you like a person and reaching out to those that need a cheering section.
I sat with legs crisscrossed applesauce, eating a bowl of honeycombs with a shameful ferocity before preschool pick-up would end these heavenly moments of silence. Skimming the cable guide’s offerings, I settled on the noonday news. Instantly, an invisible hand was reaching from the television, thrusting open my chest and extracting my heart with skillful precision. Instead of a red
“What time is it?” is not a simple question in Winamac Indian. My phone didn’t know what time it was. The time zone splits my Aunt’s farm in half. The main house sits on “fast time” (Eastern) and the guest house sits on “slow time” (Central). I stayed in the guest house. My alarm for my medicine goes off and I take it. We goof off for about an hour and decide to move to the guest house. My medicine alarm goes off.
The Peanut Gallery: Isn’t that your medicine alarm…did you take it…why did it go off again…did it actually go off earlier..should ya take it..lets count…I’m going to shower now…how much did you bring I don’t want to count a lot…is your alarm going to confuse us everyday… ug…lets just go to sleep…no its going to confuse us twice a day…ug why wasn’t anyone paying attention…has anyone asked her yet…where is she…we should make a plan…MOM!
Mom: My name is no longer Mom.
Sis: Oh Royal One, what should we do about Crystal’s medicine?
Mom: She should take it when she usually takes it 10 am and 10 pm
Me: Oh Royal One, is the usual time fast time or slow time?
Mom: You figure it out.
Sis not taking a shower: Do you remember if Crystal took her medicine when the alarm went off at fast time?
Mom: I wasn’t there. You didn’t bring your pill box? Go count. The Royal One is going to sleep.
My phone was very confused. By the end of the trip it asked me to manually set the time. The lesson learned is sometimes a watch is much preferable to a device that changes with the times. And take your pill calendar.
I have a song for you tonight, “Dizzy” by Tommy Roe. It was one of my first anthems. My niece and I would dance to this song when she was a toddler.
I remember describing being dizzy to my niece for the first time, I think she was about 3. She asked why I couldn’t pick her up right now. She asked “whats dizzzeee?” She loved the merry-go-round. So I told her it felt like I had spent to much time on the merry-go-round while someone was pushing it very fast. She looked at me with big eyes and said “Oooh, like this?” Then she ran in circles as fast as she could for about a minute and stopped suddenly. She fell flat on her face. Laying there she says, “Oh I think I’m dizzeee.” After a bit she told me to come and lay down beside her. So we laid there, both dizzy and unable to get up. She looks at me dead in the eyes and says, “you know what, I think someone is running in circles in your head.”
She is about to turn 8 now. Sometimes she will look at me intently and say “are you dizzy?” Then, without wanting a reply, she will run up to me and take my arm like her mom does when she helps me walk. “Auntie, I am going to help. Its my turn.” Then she will proudly announce to the world, “Look out, make way, my Auntie is dizzy, we’re coming through.” Dear Lord help us if she ever gets the notion to help when I am actually very dizzy.