Come along with me, the Cosmic Gypsy, for a raw & unedited barefoot journey through my life with multiple Chronic Illnesses; Fibromyalgia, Chronic Fatigue, Myofascial Pain, Osteoporosis, Addison's Disease, POTS- just to name a few.
Tonight I got on Facebook to whine about the pain in my hips (thank you Myofasical Pain) and I was going to vent a bit about another issue. Today was a horribly rough day! My memory was hiding things from me. My cognitive skills (lack of) had me repeating words and saying the wrong words (meditate and masturbate are not to be mistaken for each other 😂) My balance was off and my POTS was sending me spinning. I was an emotional twist between anger and sadness…
As I scrolled through Facebook I seen a dear friends post about what an amazing day she had! As I read her words I let out a slow breath with the thought "okay I get it!" What I heard in her words, Think positive or look for the lesson.
First let me say, I am not all about think positively all of the time, I need balance and honestly, life isn't positive all of the time. Second, her post was not even about me and she has no idea how it affected me. Third okay I get it!!!
So the positives are; thanks to updosing I am being able to maintain decent Cortisol levels so I am not fighting those nasty symptoms. The fibro is not flaring nearly as bad as I expected. The headaches have stayed at bay. That alone calls for a good day. And the lessons; well I guess I learned that being upset over someone else's actions only keeps me hurting because I'm sure they aren't loosing sleep over it. So I need to Get Over It!
Hmmm, okay I get it! I had a pretty amazing day too!
By the way, I'm super happy my friend had an amazing day too! 😘
Seriously, is it just me or do all of us Spoonies do this? Have a day that should knock us down, but it doesn’t, till three days later?
It’s a delayed reaction that never fails, 3 days after whatever intensity passes, just about the time I start thinking “oh no down days,” then BAM the symptoms hit like a freight train!
I felt it starting yesterday, but today, ohhhh today. The headache, the big D, add in vomiting, the physical pain, the emotions all over the place… all of my symptoms in one day.
I have to say though, I am very thankful, I prayed and prayed that my health hold up for that week of travel, our sons Wedding, the unexpected health issues for my hubby- and it did. I maintained fairly well! Well I say that, but I’m finding out about conversations that I don’t remember: like feeding my hubby a Snickers bar while in the hospital- THERE WAS NO SNICKERS BAR! Haha. And at the wedding I stayed in the background as much as possible. But, for the most part, with a lot of updosing- I did well!
I’m still not being able to gather my thoughts enough to respond like I want to to messages I received during the trip- *Nonie I love you and am not ignoring you, I just cannot respond yet.
Anyway, like clockwork, the 3rd day after the dust has settled and I am having a delayed flare of epic proportions.
So I pay the price now and I expected that. I’m going back to bed now. Love to all!
I don’t remember when I last posted, but I’m posting today about a subject that is argued greatly in the fibro world. I know the heat in this argument because I’ve been on both sides of it. Exercise!
When my son announced his engagement, I had two goals 1.) to be alive for his wedding! 2.) to dance with him at his wedding!
See a few months ago I was walking with a cane, sometimes even wheel chair rolling.
I was one of those with the extreme “I cannot do it” opinion of exercise! Seriously, I could barely get out of bed much less exercise. They were crazy for even thinking I could exercise!!!
So I started belly dancing, I had always wanted to do that so now was the perfect time. I started slow! It hurt sooo bad! Some days I would make it 10,20, or all 30 minutes of the routine, some days I didn’t even turn the tv on but I kept trying! And damn it hurt, every minute, every time. Do you know what I realized?
I am going to hurt crazy bad rather I am in bed or trying to shimmy. So I kept trying to shimmy! Because on the days I can dance, I can dance! And that feeling is amazing!
So to you I say, try, try even when it hurts, try!
💜 By the way, my legs cooperated as he walked me to my seat! 💜
When someone says “this stress is really getting to me” most people are referring to something negative like a loss or chaos of a rough day. But when a person with a chronic illness makes that statement, “stress” can mean many things.
Let me tell you about my upcoming week…
Monday will be spent packing for a trip.
Tuesday & Wednesday will be spent traveling to our destination. (26 hour car ride.)
Thursday is picking people up from the airport. That evening will be spent catching up with cousins I haven’t seen in a while.
Friday I will be trying to rest for Saturday but Friday evening is the rehearsal dinner for Saturdays wedding! (Yes WEDDING!!! Our son is marrying his best friend! I am going to have a Daughter in law!!!)
Saturday is Wedding day! All of the normal getting ready stuff, the Wedding itself, seeing friends and family I haven’t seen in forever, meeting new friends and family!
Sunday is traveling 3-4 more hours to my hometown to start the process of packing and moving my stuff from my old house (way long over due) to where I live now (26+ hours away!)
Monday is more packing! Oh and did I mention I’m in my home town for the first time in years? More socializing!
Tuesday & Wednesday is the trek back across the states, riding passenger for way to many hours!
First let me make sure this is perfectly clear, I am so stinking excited about it all!
This week is STRESS!!!
Travel stress (physical)
Social stress (emotional)
Sleep deprived stress (physical & emotional)
Family stress (emotional)
Packing stress (physical & emotional)
But there are two main types of stress.
For me, basically anything outside of my normal routines and schedules at home are stressful!
Regardless of the type of stress, STRESS IS STRESS, and stress irritates and intensifies more than one of my chronic illnesses. The worst being that stress depletes my Cortisol, pain depletes my Cortisol, lack of sleep depletes… You get the idea. Stress makes my pain worse. Stress causes painsomnia.
So even though I am totally excited for the week ahead, stress is Stress and it is kicking my arse!
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!
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.
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-
I have no friends within a one hour driving distance.
My fear of driving keeps me housebound.
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;
I rarely feel like leaving the house.
I’m easily overwhelmed by sensory stimulation.
My energy level is low and unpredictable.
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.
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.