Easier said than done~

I used to love trips; wearing clothes I don’t wear often, adventures, the journey… But since getting sick-er I don’t like leaving the house! This trip should be one I am ecstatically excited for, it’s my sons wedding, I will get to see old friends and family, and I will finally be moving my belongings to my own house (it’s only been 6 years!) 

 I have packing lists everywhere! Lists for medications/ refills. Lists for medical supplies (ice packs, heating pads, etc.) The book of medical information, emergency protocols etc. Lists for clothes (weather related and bloated sizing choices.) lists for personal items and then of course the lists for the pet/house sitter… Lots of lists. 

It’s not just throwing meds, clothes etc in a bag and being ready, I wish it were still that simple. I have to plan ahead; making sure all medications are refilled,
It is not a short trip either, 26 hours of being passenger, staying hydrated and stopping for breaks and stopping for the night so my body cooperates. Then a day or two of rest before my sons wedding, I even have to plan ahead here because it’s a late afternoon wedding and usually that is when I am napping because the exhaustion has set in. The following day is a 3-4 hour car ride to my parents house where we will spend the next couple of days packing up and clearing out my old stuff, then back on the 24+ hour ride home. 
Did I mention visiting friends and family in the middle of all of that? 

Just thinking of the busy-ness is exhausting. But keeping my mind clear enough to think through the fog to even get ready for the trip is mind numbing. 
I bet, by this point the healthy people are like, what’s so hard or different about all of this, a trip is a trip… so let me show you.
Medical: I need enough to last between now and the time we leave, then I have to have enough for the trip plus 1 week in case of emergency delay returning home. Some meds are 1, 2, 3 times per day, but others are as needed… As needed? How do I plan for that? Well I just added the max amount per day multiplied by the days to be gone. PAUSE- my brain fog is getting to me, how many days is the trip? How many days till the trip? Won’t refills just be enough without all of the counting, wait- counting what- PLAY- these two need refilled, these 3 need refilled with doctors consent, 2 of those need ordered. I need two new syringes called in- oh and the ice packs in to (remember to get them before I leave) and out of the freezer for my emergency case. Medications that need upped for the trip need more than usual!

Image from Google Search- gigaom .com

Walking stick needs to go, I think I’ll be okay without the wheel chair. Compression shorts, ice packs, heating pad, antibiotic ointment. Should I bring my blood pressure cuff? Grab the charger for Fitbit. Grab the Imodium just in case and don’t forget some mild pain relievers! ELECTROLYTES- omg don’t forget the packets of electrolytes and salt for my purse. 

Oh my purse: emergency injection kit, emergency medications, electrolyte packets, emergency protocol instruction packet, emergency info binder and all my other normal purse stuff. 

Oh and doctors letter, don’t forget that! 

Clothes & Shoes: yes here I pack somewhat normally EXCEPT what if I have a badly bloated day, that calls for new bra size and bigger everything else including up a shoe size- so I kinda of pack for two different people here. 
Personal products are pretty average packing! 
See the difference though? 
And the stress activates the pain and brain fog, so it is a slow and time consuming process- EXCEPT the fatigue has also set in so it’s nap time! 

Oh- bottled waters (to pour the electrolyte mix into) and salty snacks are necessary to pack too. 
Just by this post I can tell I am forgetting something. But the idea is the same, packing as a chronically fabulous Spoonie is exhausting.  

😂I fell sound asleep after typing this. 😴

Be careful what you say, your body listens! ~ 

So much is going on in life and in the world, happiness is not what it once was. Many areas of life are being disrupted and I won’t lie, I am feeling sorry for myself. I’m not feeling sorry for myself as a matter of what is happening because what is happening I am so proud of, but I am I guess what could be called empt nest depressed. Like a “what now?” type of feeling. 

Take all of what has me on edge and mix a heaping scoop of painsomnia last night, with a dash of haven’t recovered from my lack of hydrocortisone, and we have depression pie over served. 

Last night I started thinking (mistake number one,) and it led me down the “what is this worth” path- 

  1. I have no friends within a one hour driving distance. 
  2. My fear of driving keeps me housebound. 
  3. My husband is gone to work 12-15 hours per day 6-7 days a week. 

So add up the amount of time I spend with people… It isn’t even worth trying to figure out. Loneliness is avoided by filling my time reading, coloring, cleaning when I am able…

I’m not an easy friend to have; 

  1. I rarely feel like leaving the house.
  2. I’m easily overwhelmed by sensory stimulation. 
  3. My energy level is low and unpredictable. 
  4. I cancel a lot. 

But I miss friends! I miss that companionship of little outings or guests for coffee. 

Anyway, my empty nest fears were HIGHLIGHTED when I asked hubby what we were going to do and “volunteer to work 2 Sundays a month!” That means he will only be home 1 Day a month. yes he is home nights, an hour or two before bed, and usually that’s after falling asleep in the chair. Imagine how good that made me feel! 

Don’t get me wrong, I am so thankful for his sacrifice and blessed to have such a hard working man, but I miss him. 

Anyway, in my feeling sorry for myself last night I wondered if this is what my life holds; days spent completely alone, pain and exhaustion keeping me home, a foggy brain. That’s it? 

Then tell me what the heck the point is? I’m meant to just live and suffer? Filling voids with anything and everything I can- that’s it? 

I fell asleep thinking what is the sense of trying anymore, guess what? My body heard my thoughts and shut down today. 

Tonight hubby was asking a question about something totally unrelated to my health “What do you want to do?” He asked. Imagine both of our shock when I looked him in the eyes and said “I want to fall asleep and never wake up! Ever! That is what I want to do!” 

Whoa- where did that come from? I know I’m depressed! I know I want to fast forward a few months instead of face the cause and effect of stressors on my body- a pain I know is coming. But to completely give up? No, I don’t actually feel that way. If there is one thing being ill has taught me it’s that this moment will pass. So where ever those words came from, it was a part of me I didn’t know was listening to last nights conversation. 

A Big Oooops!!! Medication~

I have been noticing that I was getting sicker and sicker nearly daily, last night I was minutes from waking hubby to take me to the ER (I fell asleep- will explain in this post) because I felt like I was dying- or at least wanted to just to escape the pain. 

I had not experienced pain like that in a very long time, with every heave of my stomach the pressure in my head got worse- I was terrified- I knew what was happening- Crisis! *As near crisis as I would/should ever get without going to the ER! But that was the only thought, I couldn’t connect the dots as to what to do about it. 

“I knew what was happening- Crisis!” 

I tried something I usually don’t do, much less at night, I increased my dose  from 2.5 at bed to 17.5!  I waited! I kept giving it 15 more minutes~ then I woke up with the headache, not nearly as bad 4.5 hours later! Nausea and pain still causing chaos in my body.  My usual wake up dose of 10 was bumped to 30mg~ and I waited for pain to subside, it eased but didn’t go away. At 10:30am my usual dose of 5 was bumped to 15. Again I waited…

And finally, the headache is barely noticeable, the pain still lingers, I managed to keep my dinner, and after weeks of having it all,  the relief is amazing! Yes, I said weeks!

I made a major bad Ooops with my medication May 8th! 

I know the exact date because it was written in my #SpooniePlanner! I rewrote my medication schedule that day, as I do every few months to use as a cheat sheet for the weekly refill of medication organizer…

Fast forward to this morning and I am getting ready to place a call to dr because medication needs upped- I can feel it. I need more Cortisol!!! So I get out my cheat sheet and notice my mistake… 10+5+2.5+2.5 DOES NOT = 27.5

I added and re-added the miligrams! 30 is my daily suggested, but I do awesome at 27.5 where the heck did I loose 7.5? Why aren’t the right numbers on my cheat sheet? Reading further into that days journal entries I mention multiple times about BRAIN FOG!!! 

*see how useful a health journal is?! 📓 

*Brain fog sucks ☁️ 

*see how I should not do my own meds? 😂

OH THE MED I AM TALKING ABOUT… Hydrocortisone~ the steroid that keeps me alive! 

When I told my husband of my “Ooops,” he wrapped me in his arms and said “If something big would have happened you might not be here right now!” I hadn’t thought of that! He will now be double checking my lists. 

*see how amazing my hubby is! 😘

Tonight I am still not 100% (as 100% as I get anyway) but wow it’s a night and day difference! I’ll take extra Hydrocortisone tomorrow and maybe the next day, then be back to the real dose that really totals 27.5. 

I’m glad I found the error before it was to late! Now to recover. 

Good night! 

Blessings 💜🕯

Flare~

I’ve been watching the weather, monitoring my stress, all of the normal things that seem to aggravate my symptoms and nothing obvious is amiss. 

Yet the pain is high, the pulse is high, balance is poor, dizziness is a hazard, low Cortisol symptoms are all over the map! 

Just now I was awkwardly laying here trying to connect the dots and realized I’m flaring, that is the only explanation I see. 

This is both good and bad! Bad because it means things will be worse than normal, but good because it means I haven’t had a flare in a while. 

My skin in flaring! My joints are flaring! My muscles are flaring! My head pain is flaring! My emotions are definitely flaring! 

Yep, must be a flare! 

Broken Tea Cups~

A dear friend posted on her Facebook about getting so frustrated/ depressed/ angry with her multiple chronic and some yet undiagnosed illnesses that “things went flying.” I can relate to that so much on so many levels of dealing with chronic illness. 

I imagine a room with broken tea cups heaped in a pile, the emotion still think in the air, you can still hear the pieces falling…

Broken tea cups. That image quickly turns to a more thorough exam of the shattered and splintered pieces, not being able to tell one splintered cup from another, it’s a kaleidoscope of colors and shapes, jagged. It compares to what I (we as Spoonies) face daily~ what illness does this symptom belong to? Do I need more salt or more sleep? Is this crisis or a POTS flare? Is this adrenal pain or a transient fibro pain? The pieces are a jagged guessing game. 

Image from Hannibal teacups

Most of the pieces never get put back together, I just move on to another day, and other day wrapped in such frustration that I may add another teacup to the pile, thrown in frustration, depression, anger! 

I try to manage my symptoms, I try to decipher the pains, I try to stay strong, I try to “push through it,” I TRY! But I am so tired, so tired of guessing and not knowing, the pain that never ends, the emotional repercussions of dealing with this, the devastation of knowing I won’t ever get better…

Sometimes I just want to throw things and scream! To let it out! To watch the pieces fall. 

Splintered. 

Shattered. 

Broken tea cups. 

Sending love to Spoonie Warriors who have learned to make beautiful art from broken pieces! 💜

DYSAUTONOMIA~ say what? 

this week is dysautonomia awareness week. I’d never even heard of this until I was diagnosed with Degeneration of my autonomic nervous system and POTS is one of the things I have as a result. The last 3 days my heart rate is “getting in the red” way more often than normal, 1.) I’m spending more time outside in 100+ weather and 2.) I’m not drinking enough water. 

Today I seen the 160’s which is new, and it scared me. I guess I’ll be being more careful than normal.

Image from Dysautonomia project .org

Now I am not even going to pretend to know much about POTS- I know that when I stand up I get dizzy, sometimes it makes me fall over, standing for more than a few minutes makes me dizzy and nauseous, you get the picture. Most of my symptoms are overlapping so the POTS hasn’t been my big focus…

Until this week, this week I am feeling the right chest & pounding heart way more than normal, making me pay closer attention to my heart rate. According to my Fitbit I am getting into the “Peak” (red) zone a lot this week! 

Today has been the worst of it so far. I got into the 160’s by watering my outside flowers! Nothing intense, just slowly going along the flower garden spraying water! My world spun darkness to light. 

I thought once my heart rate slowed down that I would feel better… Boy was I wrong! 

First I slept for two hours with wicked nightmares. Then the brain fog settled in, crazy weird fog so thick… and of course tonight the pain, always the pain- cramping and twitches in my muscles, my chest is sore, I feel like a whole new kind of pain is attacking me, a pain I am not familiar with. 

I don’t know if all of this is POTS related or if the POTS pissed off my others illnesses, but I can tell you that I don’t feel very much like a Warrior tonight. I feel broken. 
For more information about #Dysautonomia here is one link The Dysautonomia Project

And a brief video Here on Facebook.

#turn6into15 

#Dysautonomia

#POTS

Permission to Live~

Tonight I spent some time looking back on the last year and I am amazed at the changes! 

I spent years looking back in sadness and anger for the person I was before getting sick. I spent a long time fighting the sick me! I didn’t know how to accept it without giving up, and honestly I didn’t want to accept it. 

In the last few months something clicked and pieces started falling into place! That day my newest doctor was blunt enough to say “I can’t cure you, there is not a cure…” I should have been heart broken, but the truth is I knew there wasn’t a cure, I knew I would never be “healthy” again! But it was like he give me permission to live again, to stop fighting and to accept all of these chronic diagnosis. 

I started noticing where my energy was going and am still amazed at how much energy was being wasted by fighting my health, distracting myself from my health by being pissed of at the world and everyone in it. 

Image from Warrior Goddess Training

Little by little I took control of where my energy was going, I chose my battles a bit more wisely, I spend less time being angry, I spend less time distracting myself from the pain! Now on a high pain day I rest, spend the day (s) in bed because I finally understand that is what I have to do. I am more careful to not overdo it on a good day. 

It’s hard for those around me to understand that I am not “better,” that I am just doing better about taking care of myself. I don’t know how many times I’ve heard “I’m sure you’ll do fine because your doing better.” And it makes me cringe; my pain is still here, the fatigue, the dizziness, the exhaustion- it’s all still here. I know my limitations and instead of fighting them I accept the changes and even plan for them. I’ve become more aware of what is really worth my energy. 

I don’t have much energy, but I do know that life is better when I am spending that energy in positive pro-active ways. Being mad and hateful, feeling sorry for myself was getting me no-where and making me sicker! 

There just might be something to the “be more positive” statement! It just takes a while to grasp what that really means because it means something different than just “being positive.” 

Here is Permission for you to LIVE! Become aware of what you are giving your energy to and you’ll be surprised with the changes that begin to unfold.