Make Me Time Special~

I am a Chronic Warrior, just like most of you reading this. I cannot work. I spend most of my days in bed. I take my meds, I read a lot, I watch some tv. I'm in pain 24-7 so a warm bath is more out of necessity than enjoyment. On a good day I may paint my nails, do my make up, things that remind me I am a feminine woman, it makes my spirit feel good.

I do all of this just because, it's been many years since I soaked in a bubbling bath as a treat, the pamper me days are long gone because everyday is spent taking care of me.

It wasn't until the last few days and a Facebook group through Your SHEros Journey that I have realized there is a HUGE difference between pamper me time and taking care of me. HUGE!

Is it just me or do we as Spoonies forget that we need & deserve Pamper me time? I got so caught up in just surviving that I forgot to make my moments special! Even taking my daily doses of medication can be seen as special time. I bet you are thinking "yeah right." But it's true, get a special glass for your water, take your time with the pills, be thankful the pills exist to help us feel even a bit better. I say a little prayer to/for my pills to help especially well that day. Yes I may be weird. Doing it this way has given me an attitude of gratitude instead of resenting them and/or myself for needing them. I'd be dead without them, seriously I have reason to be thankful!

We put epsom salt in our bath anyway, why not take a minute to light a candle, and grab a bowl of grapes. Make our pain relieving bath a moment of "I'm so worth it!" Special time.

Our healing hounds take such good care of us, why not (if you can) go sit outside and throw a ball or let them explore, showing them a treat gives ourselves such a treat, plus the fresh air is good for (most) of us.

Open your mind, see the ways you can turn an ordinary day into a self love day! You deserve it.

Thank you to Your SHEro's Journey for changing my perspective about my life. 💜

What’s for dinner?

I hate that question "what's for dinner?"

  1. I haven't been able to hold anything down in a week.
  2. I have no appetite.
  3. I haven't made it to the grocery store.
  4. I don't have the energy to shower much less cook.

But when the cupboards are bare because for the last 2weeks I've said "I'll get groceries tomorrow, I'm sure I'll feel better. Tomorrow." my "tomorrow" just isn't happening.

Tonight my amazing hubby, after a two hour commute home from working all day says "let's do it tonight" the relief and guilt wash over me in waves!

The cupboards are no longer bare! A lot of quick and easy dinners are accessible without having to find the elusive energy needed to shower and go to the store.

I hate that my hubby has to do things like this for me, but I am so blessed that he does them without getting upset. He never makes me feel like I'm a burden. I love that man.

Shout out to the amazing people in our lives who love us Spoonies unconditionally! 💜 thank you!

Now I still don't like the "what's for dinner" subject, who does? But for me, its a question that instantly makes me feel guilty; was I well enough to cook at all, was I well enough to cook something good for my family, did the brain fog mess up another dinner, did cooking cause to much pain for me to want to eat- this list goes on and on. I apologize way to much it seems, when it comes to this topic.

Anyway roast in the crock pot~ it's what's for dinner! 💜

Welcome~

I'd like to thank you and Welcome you to my blog, the place where I don't edit the words or
Myself in anyway. I am raw here, real chronicness unedited.

You'll see my good days and bad days. You'll see my excitement and my depression. You'll see me struggle, but you won't see me give up.
I blog for awareness, i blog so other Spoonies know they are not alone, I blog for family, I blog for me, I do not blog for sympathy or attention.

With that said, I'll introduce myself for those who don't know!
I've been fighting chronic illness for about 20+ years, it has gotten worse over the years, with new diagnosis being added every now and then. I've gone through the phases and back again, right now I think I'm between Angry and Acceptance.
The first question I always get asked is "what is wrong with you?" Aka- what illness do you have…

Here is the edited, updated, again- NASTY  NINE~ 

1. Fibromyalgia

2. Chronic Fatigue
3. Severe Osteoporosis 
4. POTS
5. Hypothyroid

6. Hashimoto's
7. Addison's disease
8. GERD
9. Chronic Myofascial Pain Syndrome

Then of course Multi-System Degeneration of the Autonomic Nervous System AND all of the subdiagnosis like Raynauds Phenomena, different type of Migraines, IBS, plantar Fasciitis, chronic dry mouth, chronic dry eyes, depression and anxiety… The list of subs is very long so I just stop there.

Again, I'm here to raise awareness, update friends and family who have cared enough to follow my blog, show other Spoonies that they are not alone, and to vent so I feel less alone. I'm not here to give medical advice- save that for a trained professional. I'm just a professional patient, raw and unedited sharing my journey with you.

So again, welcome! If I can help one person to say "oh me too" or help one family member to understand AI better, then I have done what I set out to do.

Acceptance and Mourning

Here I am, still in recovery mode, or maybe that incredibly tough week has just sent me into a flare. Regardless of what it's called it is kicking my arse.

Maybe because certain things are still upsetting me, things I need to let go of because I'm the only one still stewing about them. Maybe the reason I can't let go of those things is because my emotional state has grabbed onto those couple things and won't let go. Why-ever, my emotions mess with me when I feel like I do/have been feeling.

It's easy to be positive at first, when there has only been a few rough days, but when the down days turn into weeks and so on it is hard to not be depressed. It's hard to remember the good moments that made this pain and fatigue worth it.

I'm just babbling. I want to cry and scream, but what good would that do? It'd just cause more pain and more fatigue.

Tomorrow I'll be on day three of not holding food, thank you big D- NOT! Even tonight Liquid is being promptly discarded from my body. Lovely. I needed to loose weight anyway so I should t complain.

At this point I am working on accepting, accepting that I'll have good times and bad, accepting life is easier if I just accept the down time. Acceptance is hard when the flares could last days, weeks, or months, and yes even years. It's hard to look in this tunnel and not know when or IF I will come out of it.

How bad will I get? It's a fear, a legit fear.

So today I will mourn and put on my Warrior amour and fight this battle that is my life.

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! 😘