Kaleidoscope Days

Prisms on the wall of my soul
I fight to release the demons within
Fears and frustrations from life passing by
stopped suddenly just as it started to begin

.....

That could be a beautiful soulful profession... but concentrating on it now is making my eyes feel swollen, and my head is lobbing - as it often does. Today was a migraine day. Level 9-10. It was a level 9 headache... but it's definitely flipped script on me. Its back to a level 9 headache after the medication, but still a severe headache. I can't lay own and sleep and I can't just stare into space any longer. Rumdumb. A term my daddy used to use. Now, I know that shit full force. ! RUM DUMB.
Basic thoughts that used to be fluid are a struggle.
I can type things I cannot speak, and I cannot write things I used to write- short stories, poetry, all a struggle at times. I think of speaking as I write my blog, so there's a lacking in my flow in my mind- in telling a story that is real, not fiction. I used to be so good at fiction. Not as much now. Here, you get it how I'd speak it, instead of the once eloquent flow people used to speak of in my writings.

Damn this disease.

Sunday was a good day. No major headache. Productive housework in the morning, photography and wonderful companionship throughout the rest of the day. There were no challenges to my thought processes, no headaches to speak of (it was present but unfocused; unimportant)

Today has been a little less easy, even from the beginning of it, as I've woken up and tried to focus myself to get on point with what needs done.

Because often, I have no energy left, I knew I needed to do something more productive at home while I was here, while I had it in me to do. I woke up early... so I sorted laundry upon waking what needs folded, hung in the closet or hung on the door. A pile for the panty drawer, and a pile of sheets, towels and washrags.

Its  a simple, thoughtless process, right? It took my level 3-4 headache up to a 9. So I sat motionless for a long time Sam came to curl up beside me, his head on my lap, looking sadly at me, and Panda came to join me on the other side, both leaning on me their healing heat and love. They are my greatest medication right now...  At level 7, it was time to get ready for work.  At what level headache do you call off work?

Mine has to wait to a level 9-10 for me. I'm out of sick time!

Before I could even muster the energy to shower, I stood up and like a lightning bolt, sat back down. The page had turned. The script had flipped... note the level 9 was just a headache- not a level 7-10 migraine.. yes, there is a difference, yes, I know what that difference is! Do you? In almost an instant as I stood up too fast and you know that usual head rush we all get from time to time? That head rush sent me into a full blast migraine. I took my meds right away. The last of my Imitrex, as I've not yet picked up the other (that was on the agenda for this evening) and nothing short of disappointing.... I curled into the small space remaining on the bed where clothes were not in heaps of organized chaos and Panda came up to let me snuggle her like a teddy bear. I closed my eyes, as tears fell, soaking her fur. Her breathing changed as my heart beat slowed down and some of the pressure relieved. There is something so powerful in the physical comfort of love.

She's bigger now at 5 months (here she was barely two months) But I love this picture, where she is curled up on my pillow, nuzzling up to me, so cozy. Love. This was actually where she spent hours curled up to me in one position or another the day of my first spinal tap, as I had to lay for hours and hours and hours...
So many thoughts in my head about this damn disease... such love for my little baby. The physical comfort was wonderful. Hunny curled up on one side of me, Sam on the other and I was pinned to the bed, unable to move, not wanting to. I love these fur-babies. Hunny Mae, Sammy Sun and Panda Beara! (sickening little nicknames for my little loves) Hunny is not mine, she is only in my care for a little while,  but tell that to my heart!

I hate this disease.

In the course of a normal day, I go from zero to 100 in a minute.

One minute I am laughing and talking like normal, the next I am literally struck down, silent and motionless. Sometimes I recover slowly from those moments. Sometimes they last for hours or days.

Today was one of those days with repeated peaks, but never a recession to the massive flow of pain. I was rendered unconscious a few times before I was able to even message my boss- she said ok. my partner said she hopes I feel better... yes, please! I'm sitting here mid day thinking I could maybe go in, get a few hours in, but why if I know Ill be unproductive, getting up and getting dogs out has knocked me backwards

I think about the 12 spoons theory I read about regarding chronic pain. I identify with them completely. Essentially it goes that you have 12 spoons each day, and each task you need to do takes x number of spoons and you have to learn to budget them and use them accordingly. I think I've mastered this but sometimes just getting out of bed, showering and tending to the dogs takes half a days worth of spoons. As the story goes, you can choose to use more spoons if  you need to, but remember you are taking from the next days budget.

Here is when it finally makes sense about Mondays. I often call off on Mondays. My pain threshold is high, mind you, but I will miss a Monday in a heartbeat because I cannot tolerate the pain. As I sit here typing now, the headache is still about a level seven. I'm grateful it receded back to a headache from a migraine, but still... sick to my stomach because of it. I cannot think of eating or force myself to drink without gagging. What is THAT!  I think about how I must have used too many spoons yesterday as I had an effortless, nearly painless day. And I'm sad, because why would a person have to suffer through hell on a Monday for a peaceful, relaxing day on Sunday? So now, thinking of it I'm in tears... which again flips the script and Now I'm Angry. ANGRY! I have also had a harder time on Thursday mornings getting myself in order to come in. IT makes sense, since Wednesday afternoons were our hectic days at work. I also am completely exhausted come Friday. I used to work longer days and work half days Fridays, if at all... I can barely push through an 8 hour day most days now I will stay 10-11 if I feel good that day, but that's waning too. Again ANGRY!

Most of the time, since the first tap, as these days come; peaks and valleys and such, I have been grateful for the valleys, more than I was upset by the peaks, ... when you get a modicum of relief from time to time, what do you do with it? Cherish all in this life which is precious and rare, even that which seems so mundane and ordinary! Today even my valleys were treacherous. and again, I am pissed off about this disease. My peaks are powerful, but my valleys don't have the same dips they did before. Not okay.

Pseudotumor Cerebri is a filthy thief- and I am sick of sitting by and letting it steal my days and my peace, and my wellness and my memories and my ability to be my best. Along with this my pride in self and my ability to hold my head high and know I am powerful to keep my shit together. Now, My shit's scattered in a mess all over the ever loving floor. FUCK! (again, I'm sorry for the vulgarity, but honestly- keeping it real, I'm becoming NOT sorry! I'm mad as hell!)

My greatest fear in life has always been being helpless and powerless to help or save others. I am realizing today how it feels myself to be powerless to help myself and DAMN it, I am ANGRY.