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I want to share more of my journey with you, the good and the bad. It’s a hard thing to do. I don’t have the vocabulary to describe it. To talk about it I have to look at it and that is never easy. I block it, ignore it, and when I have to, I go away into a world in my brain where there is no pain, using techniques that were taught to me many years ago. Most days are spent in “survival mode”. I spend days trying to get through to the night then spend nights waiting for the day.
My hope is that my story will show you there is “Life” in spite of pain. We have all been robbed of so much it is all to easy to give in. Not giving in takes energy; energy that is to precious to spend fighting. I’m fortunate that I have found a path that gets me through. Though my path works for me it my not work for you. Every-one has to find their own way, but know, there is a path. There has to be. The only other alternative is to give up and NONE of us want to go there!
The following was written several years ago. The truth is it could have been written at any time in the last thirty years. It describes pain flare that can last for a week or more. It was written in my head while I lay on the floor with the hope I could pass it along some day. I always amazed at the clarity and insight that can come with a pain flair.

Day 2

Day one is gone. I survived it. Today is day 2. The storms have moved through dumping record snows on the D.C. area after leaving several inches of rain here. Overnight the tempretures were in the high 20’s. Today will be a nice sunny day and will hit the low 50’s. There are 2 more storm systems due in the next few days.

I’m awake at 7:30. Kitty has been on the bed all night but has moved to the living room heat vent for the last hour. As soon as she hears me move she is on the bed. We spend a few minutes waking up and I stretch and take stock of my body. Fortunatly everything moves. I hurt. Every muscle fibre screams as soon as it’s called upon to work. There are gremlins in all my joints. They have crowbars and are trying to pry them apart. Someone has beaten me about the ribs. They are all sore to the touch or the movement of muscle over them. My elbows and arms are especially sore and my hands are like clubs my fingers are so stiff that I type from my elbows. My hips hurt with the pain running down my legs. I feel crooked. I need a big mirror to tell me where I’m off. Perhaps I’ll have one some day.

I get out of bed and kitty climbs on the back of my office chair to wait for breakfast. I make my first trip to the dresser for clean underwear and socks. I get my osteoporosis meds and take one. Then it’s off across the room to put dirty clothes in the laundry bag. Kitty plays tag along the way. I put on my shirt and pants from where I left them on the chest last night. Kitty plays tag and I tell her to wait while I put on my last quilted shirt. When I’m dressed I lean against the chair and kitty climbs up into my arms for our trip to the kitchen. On the way I turn and dip to turn on the computer.

Kitty and I dance our way into the kitchen. I put her on the table and lean down to put her food dish on the table. While I’m down there I pick up her water bowl. When I stand up it’s one twist to the edge of the sink. A twist back to the table and down with the bowl. Up and twist to her food on top of the freezer. Back down and up and I’m done with a few pats to kitty before she jumps down to eat.

Regroup and realize that my hips are going fast. I launch from my position on the end of the table to the left hand doorjamb leading to the hall. That lines me up to head down to the bathroom. There I have lots of doorjambs and counters to lean on. The toilet seat is always down as a landing place of last resort.

Again I’m at the kitchen door. A full turn and I land my butt against the counter next to the sink. Why am I here? Do I want something or is this just where my body has flung me. Now there are waves of pain snapping through me, like shaking a blanket. My muscles are rebelling. I’m forcing them to work without allowing them to purge themselves of toxins. They fight back by sending various body parts flying about in spasm.

Oh yes I’m in the kitchen and really do want to be here. I want coffee. Oh yes I need to cook oatmeal for breakfast. Coffee! Oh My cup is in the cabinet. That’s behind me. I turn and open the cabinet. Now the question is can I raise my arm high enough to reach my cup? After a long slow stretch I get it and am off to the other side of the sink. Coffee. Plug in the coffemaker and get water from the sink one cup in and a half-cup to add because I have an oversize cup. I pry open the top to add the grounds. It resists my muscles attempts to dislodge it. In the end I overcome and it’s open. Now it’s time to regroup. Coffee! Coffee grounds are on the table. I reach over and slide the coffee off the table into my other hand. Now I can carry it with 2 hands and not have to lift it. I swing it up onto the counter and measure it out. Swing it back and onto the table.

Slide down the counter and get a pan for oatmeal. I’m on a roll now. Back down to the other side of the sink and open the cabinet. What’s in the cabinet? What do I need? The measuring cup, that’s why I’m here. Water in the pan and down to the stove. Turn on the stove and try to remember to double check what burner is on. Add a few dashes of cinimon to the water and it’s back to the coffee maker for the rest of the water.

While I wait for the water to boil and the coffee to drip I twist and turn through the house opening curtains and blinds. The computer has booted so I start my online day with the home pages. Oh OH I smell cinnamon! The oatmeal water is boiling in the kitchen. So, I’m off to the kitchen, quick as I can.

The oatmeal is on the second shelf but is light enough to manage with both hands. Once the oatmeal is mixed and set aside I turn my attention to the coffee. Grounds go in the recycle bin. I added cabbage leaves last night and it needs to be emptied. Rinse the filter and back to my cup. The brown suger is another two hand swing from the table. Half and half is in the refrigerator a straight line across the kitchen. There and back and I have coffee.

It’s off to the computer. I check the temps and forecast then turn to the news. It’s DAY 2 so I read the headlines and try an article or 2. My brain has overloaded and I can’t follow from one end of a sentence to the other. I watch the network news from last night and call it a day.

My oatmeal. I forgot my oatmeal. I’m off to the kitchen in pursuit of my forgotten oatmeal. It is a fun dance. I have music on in my head. I “dance” twisting and turning from door frame to chairback along the hallway to the kitchen door. A twist brings me back to my spot by the sink. I’m here for oatmeal. I launch to the fridge and get strawberries out to mix with my oatmeal. While the strawberries are melting I twist and dance to the bedroom and back with the laundry bag.

With my laundry in the washer I can head back for my oatmeal. I get as far as the stool in the middle of the kitchen when I have to stop. I’m an arms length away from my oatmeal but it might as well be a mile. There is no way I can reach over to it. Even if I could stretch my arm I can’t grip it tight enough to pick it up. Kitty comes over to say hello so I take a break and everything is cool.

I’ve finished my oatmeal and had my inhalers. I think I remember taking my lyrica. Somewhere in my dim memory I have a vision of that happening. I take and lay out my meds for the next week, morning meds in one tray and night meds in another. Now I just need to remember to look in the trays.

I’m doing ok my legs and arms are dancing but kitty is asleep in my lap and my brain is switched off. Now the laundry is finished so I’m off to hang it out.

That wasn’t too bad a few twist and turns and the laundry was all out on the line. Now it’s almost time for chat. Through the kitchen to the hall door. From here it’s a sort step and a half to the shop door. One step and the wave comes. I knew it was coming. I just didn’t know where I’d be when it did. Yesterday I was in the kitchen. The wave starts at my feet. My toes cramp from the first twinge of pain. Then it’s along my foot where it slings itself around my ankle gaining strength and speed, through the muscle and bone of my shin to explode my knees. I know I’m going down. I look around to see what I can grab to make my time on the floor easier. The pain is coming. My thighs give it time to pause gaining strength before blasting into my hips. My legs are uncontrollable and I’m going down for good. The pain is relentless raging up my spine, pulling things this way and that. Up an up through my neck into my skull. Oh lord there is no where for it to go! Then it’s gone like the snapping of a sheet. I’m safe on the floor relaxing.

The Floor. The floor is my friend. I have crystals in the windows to throw rainbows. If I have to be on the floor I can at least try and be comfortable. It’s hard to be depressed when there are rainbows dancing about. But today I’m in the hall. It could be worse. Yesterday I was on the kitchen floor. I have pictures to look at. I’ve managed to get on my back so I can see them. Kitty is beside me rolling on her back being her cutist self. She is worried and gently trying to get me to play. It’s no use the waves of pain are rippling through me and I need to get them under control.

Breathe. In Out. In Out. Gently slowly In Out. Feel kitty curling up on my chest. In Out slowly. Another wave of pain and my arms jerk. Kitty isn’t too sure of her perch now. In Out slowly kitty settles in. here comes another wave breathe with it. It’s ok let it roll over and it’s gone with the exhale. The next will be easier. Relax Find my heartbeat. It’s there a steady rhythm always there.

Breathe In Out slowly as another wave rolls through. Now in the lull, feel my head, the spots on my skull that feel like they’ve been hit, my jaw where it’s a little tighter than it should be. Loosen it. Gently realign it. Feel the muscles as they do this work. Take stock of my teeth one at a time. Acknowledge the holes of missing teeth, victims of poor care and meds. My lips, are they wet or dry? What can I do to make them more comfortable? Scrunch and relax my brows.

Slowly work over the top of my skull and down my neck. Taking time to look at each and every part of my body. Like slices from an mri. Slowly looking, finding the sources of my pain. My elbows hurt so I stop and look at them. See the joints as they flex and grind. Follow the muscles as they contract and spasm the tendons tight as bowstrings. Stop and send in the workmen. More blood flow. Raise the temperature relax the area send it food relax the area let the blood remove the garbage that has built up.

Slowly Breathe In Breathe Out. Working from one area to the next. Down Down along my spine out around my ribs. My pelvis and hips are next. They are tough obstacles to get through. My hips are crooked but I can’t tell which one is higher. Relax Breathe with it down around my ankles easing help through to my beleaguered feet. Relax slow and off to that world that keeps me safe from pain. A kaleidoscope of images and places. Places I am warm and there is no memory of pain. Gently in the background is the memory of my heartbeat, setting the rhythm as I drift along.

I’m blessed! Truly Blessed. I’ve escaped the pain for however short a time it may be. I have a home with a roof that doesn’t leak. It’s a true refuge in the country, where I can play in the dirt with my vegetable seeds and fruit trees on good days. On bad days the house is small enough to stumble and crawl from one end to the bathroom at the other.

OH did I mention?

Today is DAY 2
Like so many of us what lays ahead is horrible. I can’t change it. The docs can’t fix it. All I can do is accept it and follow the path as it opens before me. Focus! one foot in front of the other. Breathe in, breath out. Find something “good” in every day. If there is nothing good then redefine “good”, a child’s laugh, a bird song, the sun warming your back.
Don’t be afraid to try, after all even if you fail how much worse can it be. Follow your path.
Take care of each other and have a gentle day