Glass sliding doors~

Have you ever watched someone or something walk right into a freshly cleaned glass sliding door? It's funny not funny right?

My mind is full of glass sliding doors, some call it brain fog, to me it's more like I can see the thought or word I want and I go for it and BAM I run into this invisible force that stops me from getting to them. I back up and take another go at it and still that glass sliding door keeps me locked away from my thoughts.

For the last few weeks my glass sliding door is locked. Sometimes I can see the nose prints on the glass, but other times it's clear. Usually I prefer texting or instant messaging because I can edit my words and thoughts so I appear coherent, but not lately. Lately I read the message and by the time I stop reading the response has already came and gone and is now locked on the other side of my brains doors. Sometimes I have the perfect response but my hands do not type out what I am trying to convey.

When the glass doors are shut I have no filter to my words, no tact, they just come out of my mouth and usually not in a tone appropriate for the conversation. So either my words get stuck behind the thinking glass or they sneak around the glass completely.

I know I have not been very nice with the things I say, I don't mean it that way, I don't mean to hurt feelings or call people out on their BS, it just happens.

I think my "you need to clean the house/ start laundry/ take a shower" motivation gets locked behind the glass door too. These are things I know need done, but from the thought to the action I loose it and find myself staring into nothingness.
It is frustrating!!!
It makes me feel stupid!!!
It makes me feel useless!!!

So to all of my friends and family still waiting on responses from the wedding 2 weeks ago, your response is locked on the other side of my glass sliding door.
My brain is just now letting little bits and memories from the wedding be of access to me.
I was mad and hurt that I hadn't talk to my son since we been home- nut my call log says we've talked a couple of times. I don't remember talking to him but I certainly remember who was left off of the Thank You announcement. Why or how can this glass door pick what memories and thoughts to hold onto, letting some in (usually the ones I wish I could forget) and blocking out others?

Okay my doors and sliding open and closed with a vengeance, I'll end this post with wishes of open doors today! 💜💕💜

Painsomnia~

It's almost 4am and I've yet to do much more than doze off before the pain rips me from that sleep I was hoping for.
I think there are stages of painsomnia, like the pleading stage where I plead and beg for sleep, then the negotiation stage where I try to make a deal for sleep, and anger stage where I just want to beat the hell out of my pillow, the mourning stage where I mourn how very little sleep I will get before I have to be up, a grief stage where I grieve over every possible worst case scenario for my whole life… yes painsomnia comes in stages but I don't think acceptance is any of those stages. Back to the anger stage.

It's hard not to be angry when I've spent the last several hours in 7-9 pain. The kind of pain that makes my stomach turn and never eases. There is no positive to this, it just hurts.

I had hoped ranting about it would help, but I can see that is not the case and tears are blurring my vision.

Wishing you a happy and as pain free Tuesday as possible.

I had an amazing day!

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! 😘

Like clockwork~ 3 Day Delay

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! 

Shimmy Shimmy~

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! 💜

Stress is Stress~ and it’s kicking my arse! 

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… 

  1. Monday will be spent packing for a trip. 
  2. Tuesday & Wednesday will be spent traveling to our destination. (26 hour car ride.) 
  3. Thursday is picking people up from the airport. That evening will be spent catching up with cousins I haven’t seen in a while. 
  4. 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!!!)
  5. 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!
  6. 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!)
  7. Monday is more packing! Oh and did I mention I’m in my home town for the first time in years? More socializing! 
  8. 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. 

  1. Negative Stress
  2. Positive 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!