Category Archives: Just me

Spoonie tips and tricks… Part 1

It’s been a hellish week here in Colorado. Fall has officially fallen and with it comes the inevitable pressure change induction flare-ups. I’ve been rendered pretty much useless for a week now, which begs the question, what the hell do I do to manage the pain since I am not taking lots of medication?

Here are my tips and tricks for managing a high pain flare-up:

Stop fighting the pain.

Have you ever been to the ocean or in a water park wave pool? You know how you can be standing up in the water pretty balanced until you get just deep enough that the combination of undertow and waves will knock you on your ass, every single time? Pain is like that too. The harder I fight the pain the more exhausted I get. Instead, I try to float on top of it, just like waves in the ocean. I go limp, I relax, and I imagine myself riding the waves. The better I am at this the more I can push the pain into the background.

Now, if the pain is above a 7 I am not going to be able to do much other than relax and push it into the background. This technique takes a lot of mental energy and can be very exhausting so it’s not a coping mechanism that allows for a full plate of activities. I can use the technique when the pain is lower and work and such, but not when it’s really bad.

Movement is my friend. 

Lying in bed is bad. My fibromyalgia pretty much makes my legs, hips, shoulders, ankles, and arms hurt after a normal night’s sleep so spending the whole day in bed isn’t a good idea. I move around. I have two 3 pound weights next to my bed that I use while I am watching t.v. I do curls, triceps, whatever I can to keep moving around. I also have a solid memory foam knee pillow I use at night to sleep. During the day I place it between my feet and slowly squeeze it. I also try to walk the dog every day.

Ice Ice Baby. 

Nothing is better than an ice pack on the back of my skull. I’m pretty sure I have signs of frostbite under my hair because of the amount I time I spend icing.

Binge watching t.v. is good.

I have a few favorite movies and shows I go back to when I am desperate and need to fall into a story but yet am not able to pay much attention to it. However, the rest of the time I like to pick a new show and watch several seasons of it. This allows me to lose track of the amount of time I have been in pain.

Treats. 

I’m currently on a diet so I can lose enough wait to have breast reduction surgery. (Yes, I am giving in to the wisdom that having less for my back and neck to carry might help my headaches.) As a result I am pretty strict about calorie intake most of the time. Unless I am in the middle of a several days to week+ long flare. After a couple of days I am looking for anything that will make me feel emotionally better so I can best withstand the onslaught.

Yesterday it was a GF pecan pie from Whole Foods. I ate half of it throughout the day. It’s all I ate, there was nothing remotely nutritionally redeeming about it, and it helped me feel pampered. I am pro-treat.

Tiny, fun tasks. 

I get squirrely after several days of zero accomplishments. I start to get panicky about being stuck like this forever and of course panic makes it all worse. So, I try to do small fun things that are on my to-do list. For example, today I set up a few of my Halloween decorations. It took about an hour, with lots of rests in between, but at the end I had enough up to feel I had done something, I got out of my room and into the rest of the house, and I had a bit of fun.

There are more tips and tricks I use but for now I am going to get off the computer and back to distracting myself with “The Unbreakable Kimmy Schmidt”. Best of luck to the rest of you, I hope you are not dealing with flares. If you are, you are not alone.

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The crush of fall…

I love the fall. It’s by far my favorite season. I love the rain and the mist and the cooler weather and fuzzy sweaters and tea.

Unfortunately the fall doesn’t love me. The rain and mist come with pressure changes that make my head feel as though someone is trying to crush it, unless it feels as though it’s going to explode.

I try to enjoy the fall, I break out my super soft sweaters and leggings first chance I get. I don my ultra thick fuzzy slipper socks and wrap up in my soft pink muppet shawl. I curl up with pets and coffee and try to relax.

It’s just harder to enjoy it. My jaw stabs in little reminders that the pressure is shifting, my head aches with an increased dull throb, and every little sound makes me want to kill.

Winter will be worse. Snow storms bring the worst in pressure changes, pregnant clouds will beat down upon me until finally releasing me when the snow actually falls.

There will be days spent in my room, curled up next to my cat, fireplace on, wishing I could do more.

For today I am pulling in the feelers, retreating into myself.

To challenge or not to challenge…

Anyone who has been following me for the past few years is aware of the long, tedious, and side effect filled journey that has been my tale. I have tried the leading medical treatments and hospitals, I have tried some outlandish theories, I have found some successes, and I have given up.

After years of ups and downs and pain I am finally at a point where my peaks and valleys have largely grown closer together until I am at, if not a constant state of wellness, at least a relatively manageable and stable level of pain. I have also dispensed with the side effects that usually come with the treatments and trial periods, so I am better able to reliably guess my limits.

I am dialing it in.

Is it time to try more? If I am achieving balance in this current state is it time to push myself a little? To see if I can eek out a closer to normal existence? Do I dare?

Pirates stole my spoons!!

This weekend was PirateFest in Northglenn and as usual I overdid it preparing for and dealing with the event. In addition to creating a slew of last minute items last week I also reinvented my displays. I did manage to rest some leading up to Friday but not a lot.

Friday early afternoon I grabbed Oliver and we headed up to Northglenn to set up. He was amazingly helpful, especially for a 10-yr old. I am certain I wouldn’t have faired as well without him. He helped me set up the tent, the tables, the chairs, the decorations, the displays, and even the items. During the Pirate Ball he even ran for food and drink and minded the store while I used the restroom. By the end of the evening he was up to speed on using the credit card reader and counting back change.

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Sales went well. I completely sold out of chokers, which tells me next year I will need more of them. My ‘mermaid tear’ pendants sold well too.

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A mermaid tear necklace made from chandelier crystal. 

A goodly number of people bought my charm necklaces and some bought my higher end silver items. It was a good feeling to see those pieces find homes.

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Sterling silver earrings dangle from a happy pirate’s ears! 

As usual I learned a few things:

  1. Never, ever, use a red camping shade tent in high wind for a jewelry show. To begin with you will have a red cast to all your pieces – see above photo. Secondly, you will see said tent break as the wind whips all the things around. It’s far better to just buy the commercial tent.
  2. No matter how careful I am I will always overdo it during a show. Ouch.
  3. Electrolytes do help with the headache. Not so much with the swelling and stiffness of fibro.
  4. My back won’t actually snap in half when I force it to move after an entire day on my feet.

I have been pretty good about resting today. I did some hydrotherapy on the advice of my massage therapist. Using epsom salt and peppermint I scrubbed all the sore spots vigorously under warm water and then rinsed with cool. It seemed to loosen me up enough to take a short walk with the dog, which in turn loosened me up even more. Sometimes it’s hard to remember that movement itself, as much as the initial bits hurt, ends up making me feel better.

Next week I have Denver Handmade Market, which means I will need to get more things finished this week and then spend three days in a booth hawking my wares.

Let’s hope I can save up enough spoons for it!

 

The witching hour…

It’s nearly midnight. My son is sleeping peacefully at my side, the dog curled into the crook of his arm in slumbering bliss. The cat gave up trying to sleep on me because despite having worked myself way too hard today I can’t sleep!! ARGH!

I made displays for my upcoming show today and now I can’t stop thinking about them. I have been wanting to create a unique and cohesive look that would travel well and not require I suddenly be able to lift 8 million pounds. These were my solution: IMG_20170910_184535

Each of the upright displays (There are two grey ones and two violet, I just didn’t have room to photograph the 2nd gray display) is cork board over 1/4 inch thick plywood with a fabric cover. I basically made pretty sandwich boards. The table top displays were various baskets and things I stitched the fabric to and then wound copper LED lights through. I used the battery packs for the lights to angle the displays slightly. I’m very pleased with the result.

I also made a display for the “chandelier earrings” I have been working on:

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I plan to hang the chandelier from the lighting construct I made today and then hang the earrings from it. I also wound a copper LED light string through the chandelier to brighten it up a bit. I’m hoping the addition of the chandelier will further create the ambiance I want in my booth.

I am very pleased with the result of my labors but I am an idiot for pushing myself so hard. I just wanted to have everything done on the display end so I could relax and finish product throughout the rest of the week. The problem with being a one-woman show is there is no other person to pawn this stuff off onto!

Here’s to hoping I don’t pay too dearly for the work I did today.

Overhydration…

So apparently this is a thing. I didn’t realize it, outside of victims of ecstasy at nightclubs, but you can routinely drink too much water. As a person who contends with chronic daily migraine I make a point of staying hydrated. In fact, my purse is a 3L hydration pack that happens to also carry my wallet and occasionally a lip balm or two. I live in terror of becoming de-hydrated because it can cause my migraine to flare up into impossible to operate with pain levels. I’ve done this for years.

So how did I discovery that perhaps I had become a little too overzealous in my diligent self watering you ask? It all started with volunteer work on the preserve.  I am the Vice-President of the Southern Plains Land Trust and we had our board retreat this past weekend. While I was nervous about managing pain for three days in the sun I was excited about being away from the city and seeing all the lovely animals.

While I was down there I fed bison and donkeys, walked our land, strategized our upcoming fundraisers, and generally enjoyed myself. I employed liberal ice packs on the base of my skull, took ibuprofen like vitamins, and did pretty well up until the final project: dust dozens of acres of prairie dog burrows with insecticide to protect those darling critters from plague. It was noon, high noon, 101 degrees and no shade noon. We were dressed in full length pants and shirts and gloves. I filled my 3L hydration pack and got to dusting. I walked to a burrow, checked it for signs of burrowing owls, and if there were none, bent down and squirted the dust deep inside. Rinse, repeat. Walk, bend, straighten. Drink. Walk, bend, straighten. Drink. Soon it became so warm that I was drinking almost non-stop.

When we were done we loaded up into the car our President had so kindly delivered us in and headed home. I could feel the flare at the base of my skull, a veritable thundering horde of pain held back by sheer determination and my last remaining ice pack. My joints and back began to stiffen, my hands and feet to swell. I told my fellow board members I was going to be out of it for the ride home and popped an emergency Vicodin. Twenty minutes later and I could tell the Vicodin was going to do nothing, the inevitable blinding pain began to build and wash over me in waves.

We stopped for gas and I stumbled inside to get ice water. My treasurer got Gatorade and I thought, what the hell, maybe a SmartWater wouldn’t hurt. Instead I saw this water called Core and it was cheaper. What the hell, a penny saved…. I bought it. I drank it. I felt the pain recede a little. At the next stop I bought another larger Core and drank it in minutes. I felt better. By the time we were two thirds of the way home I had consumed three bottles of electrolyte enhanced water and the “Paying for it” flare up I had been dreading was back to a dull roar.

What the hell is going on!?!? I have spent the past 4 years searching for answers and pain management techniques and suddenly I discover an electrolyte enhanced water that works better than any “rescue” med I have ever had?

So with my renewed spoons I did some research.

Common symptoms of an electrolyte disorder include:

Do any of these look familiar my fellow Fibromyalgia friends? It turns out that we need to keep our electrolytes in balance in order for our bodies to function properly. An electrolyte disorder occurs when one’s electrolytes are either too high or too low. In severe cases electrolyte imbalances can cause serious problems like coma, seizures, and cardiac arrest.

And, as it turns out, can mimic or exacerbate a fibro/migraine flare. By being so diligent with my water intake I was actually flushing these useful minerals out of my body and causing myself harm.

Okay, so what are electrolytes?

An electrolyte is a substance that conducts an electrical charge when dissolved in water. We need them to live. All living things need them. Our heart, muscle and nerve cells use electrolytes to maintain voltages across their cell membranes and to carry electrical impulses to other cells. With improper levels of electrolytes in our bodies these functions are impaired and can even break down.

So, I have learned the thing, what have I done to incorporate the thing into my self care plan?

Well I don’t like one-off plastic bottle use and try to avoid it whenever possible so I had to look away from simply drinking Core every day. It turns out Emergency-C carries an electrolyte supplement in packets similar to there vitamin C packets. So I bought them. In an attempt to avoid making my electrolytes too high I am adding one packet to my water bottle in the morning and proceeding as usual, perhaps with a little less water intake on the whole.

TMI ALERT: I discovered your urine should not be clear. It should look like a light refreshing lemonade -hopefully without the pulp. (If your urine is pulpy you should see someone about that.) My urine was clear, and has been clear, for ages. I took the advice that light colored urine was a positive thing to mean the lighter the better and assumed clear, being the lightest you can get, was best. I was wrong. It is a sign of over-hydration.

So there you go! Hopefully this information helps you as much as it did me. I will let you know if there are any other benefits/downsides to this experiment in balance.

For now, here are some pictures from my time on the preserve for your perusual and enjoyment:

Facing up to face pain…

Sometimes my trigeminal nerve likes to make my face feel as though someone is slicing through it with a super sharp razor blade, over and over again, non-stop. Nothing really helps with the pain once it’s been activated, except for dry needling.

I have been staying away from dry needling as I was feeling better and didn’t need it anymore right?

Wrong! I need it now! It’s nearly 1 am and I can’t sleep because some invisible sadist is carving the left side of my face like a jack-o-lantern.

So tomorrow, phone calls and needles. Lots of needles. Also, when did my spirit animal become an ostrich?