So, over the last week I have been thinking “wow, I am doing really good!” My memory get like it was working, my pain wasn’t too bad, sleep has been good! Aside from this severe tummy bug that sends me to the toilet 15-20 times a day I have been doing good!!!
So Yay me for having a decent few days! I accomplished things I usually don’t even attempt.
Till today… it’s time for my weekly refill of medications, but I’m missing 5 prescriptions and 1 supplement! Omg I forgot to order and forgot to call in refills. I forgot to send of some mail that needed sending, I’ll be double checking bills paid in just a minute.
WHAT ELSE HAVE I FORGOT THAT I DONT KNOW I FORGOT???
I have a planner for these things! I didn’t even write it in the planner!
It breaks my heart when I think I’ve been doing good just to start realizing that I wasn’t doing as good as I thought I was! But that’s okay, things are getting fixed, it was still a good week! Not going to beat myself up over it…
*on a side note, the dr just called, have I mentioned what an amazing dr I have? Well about my tummy issues, he’s concerned because there’s no pain and there’s no fever or chills. He’s also concerned because this could send me into crisis and is surprised it hasn’t. Yay me for updosing!!! So, keep updosing, go to a Gatorade and rice diet till Monday- and we go on a trip this weekend! Blah-
Not in a good mood! 😢😢😢
It is going to take me more than 30 days to do this challenge.
What is the biggest realization I have had?
There are so many big realizations it’s hard to mention just one! But if I had to pick just one; People are cruel to people with seen and unseen disabilities! Don’t get me wrong I have seen people being extremely loving also, but for the most part, people aren’t nice. From the people you think are friends making demeaning comments to the family who should support you minimizing your symptoms to the stranger who makes you feel inadequate for walking with a walking stick- people are cruel!
Getting used to disappearing friends, trying to block their hurtful comments from my memory, pretending I’m okay that they are gone~ that’s tough, really tough! It hurts. A lot. I am not the way I am on purpose, yet I’ve become someone they can’t stand to be around!
Family~ is it denial of my situation or simply that they don’t believe the seriousness of it? My symptoms are minimized, they think I can be cured by meditation, a new hobby, or changing my diet! I wonder if they know how they make me feel?
But, I think the biggest realization I have made has been about me! I am on this journey of chronic illness, sunken to the depths of myself to trudge myself back from the depths, I’ve been at the edge ready to jump and yet I don’t! I am so much stronger than I have ever realized! I get to meet a new me everyday. I face my darkness daily, balance is my goal. And get to get in touch with me on a level most people don’t take the time or effort to do! I’ve realized helping others feels better than helping myself.
My husband, sons, and true friends have shown to me that I am worthy of unconditional love, even with all of this chronicness.
Okay so I did good at not writing a ton of BIG realizations! These were my biggest!
My days and nights are mixed up, I am awake until about 6am and then fall asleep for a few hours. So when exactly do I take my morning medications? It’s became a mess!
And today, today was a super BIG oops! Usually my schedule looks like this:
- 6am- 10mg HC plus two meds
- 8am- rest of morning meds
- 11am- 5mg HC
- 3pm- 5mg HC
- 6pm- dinner meds
- 9pm- evening meds plus 5mg HC
- 3am- 2.5-5. Mg HC
But today it looked like this:
- 5:30am- 10 HC then I slept till 11am
- 11am- first set of morning meds
- 1pm-second set of morning meds
I thought I over did it today with activity, I started feeling very sick and went to bed, nausea prevented sleep. The pain took over. The dogs were driving me nuts with the whining and clingy licking. I kept laying here wondering what the heck triggered this…
- 4:22pm, laying on the bathroom floor, nausea turned to vomiting. And suddenly the clingy whining dogs makes sense to me.
- 4:27pm-10mg HC
How the heck did I forget all day to take my HC? How did I not see the signs and connect the dots? Why did I not remember that the dogs alert me?
BIG BIG BIG OOPS!
If I could have told myself something when symptoms started, what would it be?
Oh wow, so many things came to mind here.
- It’s going to get much much worse.
- You are going to turn into a brand new person that you love.
- Take it easy!
- Let yourself rest.
- Skip all of the doctors and go straight to Dr. P
- Learn to meditate
- You are about to be shown who your true friends are
- You are about to be shown who you really are.
- Eat healthy.
Oh there is to much to list. But, in all honesty, I don’t think I would change anything, because that might change everything, and that may or may not have been worse or helped me be the person I am becoming.
How does being chronically ill make me feel?
When I first read this prompt I laughed out loud, how do you think it makes me feel? How would you feel if you woke up one morning and for no reason felt as if both ankles were broken, they were fine the night before, then gradually you got sicker and sicker. As you got sicker your friends disappeared, your doctors couldn’t find a cause and your family minimized your pain. You couldn’t play with your babies anymore. You couldn’t function, a conversation was exhausting and frustrating. You either slept all of the time or you prayed for sleep to relieve the pain and depression. You felt crazy and alone. Oh so alone! Now a wheel chair or a walking stick are traveling companions, the medications cost more than your mortgage, the doctor appointments are your idea of getting out for the day, what the mail man brings is what you look forward to just to break up the day! Multitasking is now swallowing a pill and water at the same time, a nickel bouncing in the dryer overloads your senses to the point of nausea and a meltdown, and what was once your favorite tv show now makes you shake with sensory over stimulation. How would YOU feel? Yes, I feel angry, and I feel sad, and I feel disappointed, I feel cheated, I feel abandoned. I feel like a burden.
How does being chronically ill make me feel? I bet you wouldn’t have thought that it also makes me feel blessed! Yes, I said blessed! The people that are still here love me for me, unconditionally! My husband promised “in sickness and in health” and he’s kept that promise. My sons are amazing young men in part because of my illnesses. I have taken a journey to the depths of my soul that most don’t take the time to do. My relationships are real. So yes, I feel Blessed!
It is not that cold!
It is not that cold!
It is Not that cold!
It is 57’outside right now and my body thinks it is freezing! The pain is bone deep. It’s like rain pain but in my bones and it hurts!!!
I was born and raised in Oregon, I know the cold! But having left there 5 years ago, being in the Texas heat has spoiled me. So 57′ IS THAT COLD!!!
Even my collar bone hurts! My collarbone? What the heck, when did that become a place that hurts in the cold? I’ve heard of knees, ankles, necks, fingers, but collar bones???
On a good note, I slept from 9:45pm last night until 9am this morning- minus two wake ups for meds. Almost 10hours!!!
Time to go find the heating blanket so I can stop twitching and spazzing.
How have my friends and family reacted?
Well, my true friends are the ones who stuck around! There are few but they are amazing! When I am posting cranky, they know it’s a mood. When I am posting moody, sad, sleepless, whatever, they just go with it! They don’t post nasty demeaning posts on their own Facebook referring to but not saying it’s about me. They don’t do the “be more positive and you will feel better” crap. They just support me!
As for family, well, some family is awesome and do the things my friends do, I am thankful for them. Other family, they downplay everything I go through- needless to say I don’t talk to them much.
I used to get very hurt by the people who said they cared about me then they showed a different side. Now, I have very little, if any, contact with them.
The ones still here, they know me, I don’t have to pretend or be hurt by any unnecessary comments.
Yes, they may get sick of hearing about my illnesses, I wonder if they realize I get sick of living with them!
Thank you to those still here, loving me, unconditionally!!!