They call it the flu.. I call it fucking life up

March 20, 2018March 20, 2018 ~ msgracefulnot ~ 18 Comments

I’ve been through a lot in my life, is it possible that I have never had the flu before?!?! Maybe I caught some special breed of this monster? Whatever the hell you call it, it seriously fucked me up.

As many of you know, Thing 1 Got married on March 10th. We went out of town for her wedding on the 9th, and from the moment we walked out the door the entire weekend was MAGICAL! (I have pictures and video to prove it!) Literally EVERYTHING was perfect.

At 6 am on March 11th, I closed the door to our hotel suite saying goodnight to the last “after party” guest. I climbed into bed next to Einstein and smiled. Our princess really was a princess!!!! What a wonderful weekend!

Did you know that today is March 20th? Trust me it is! ( I have checked the TV, the Computer, and my phone 3 times) How the hell did this happen?!?! 10 days!!! I have “missed” 10 days!!!! Where the hell have I been?!?!?

Again, they call it the FLU. Oh I’ve got some words for it, but autocorrect keeps changing what I say into “#$^$#^@#$(%$)” I keep trying to fill in the ” missing pieces”, but I can’t believe it’s been 10 days. Where the hell have I been for 10 days?!?!?

The answer is Horizontal. Drugged, in a daze etc. Apparently, I caught the flu and it literally kicked my ass or fucked life up. I remember arguing with Thing 2 about going to the Emergency Room. (In hindsight, Never have I been so grateful that she doesn’t take no for an answer.) The fever that I had been fighting reached 104, my oxygen sats were in the 80’s, and I got dehydrated. I’m home again and I today I am vertical, but that’s all I’ve got for now. I have a feeling this is gonna be a long road.

Still recovering

March 14, 2018 ~ msgracefulnot ~ 9 Comments

I would really really really like to share the details of the amazing weekend we had, unfortunately at the moment staying vertical for more than 30 minutes at a time is a challenge.

Thing 1’s wedding was amazing. The entire weekend was amazing. MS didn’t stop me from having an incredible time, however, now it seems to be time to “pay my dues” or let it be for a bit. I won’t go so far as to say I am having a flare up, more a pseudo exacerbation coupled with a cold, the flu…or whatever is causing me to have a fever of 102 with body aches.

Thank you to everyone that has reached out to ask if I am ok. I will be!… For now I just am. One day at a time.

How did I get here?

March 6, 2018 ~ msgracefulnot ~ 29 Comments

I woke up this morning feeling, I would like to call it “recharged”, but it is better than that, and I really can’t find a word to “define” it. Liberated? Free? Optimistic?….I guess the definition doesn’t really matter, but the feeling is INCREDIBLE.

Today, I was “supposed” to run electricity with my dad, but the weather changed our plans. As I reached for my “to do list” to fill up my day, a thought hit me. I really LIKE this feeling. Instead of rushing to fill the “free time” with some other task, I decided to do nothing, just for a minute…. Did I mention I like this feeling??!?!? I still don’t have a word for it, but I really like it.

Those damn feelings of CO-Dependency kept trying to creep in. Someone, somewhere must need something. I am positive that I am forgetting something for the wedding, maybe I should start packing now, so I can recheck it 50x before we leave Friday morning? STOP IT GRACE!!!

I looked at the calendar, everything is right on or ahead of schedule. How the hell did that happen? The last two? three? weeks are kind of a blur.

Okay so how did I get here?

I reread some of last weeks blog posts. Oh yeah, I kind of remember doing that…. maybe? I’ve been living on auto- pilot. I have been “going through the motions” and not letting myself FEEL anything.

Yesterday, when I arrived at the hospital for my Tysabri infusion, the nurses kept asking me if I was ok. “Are you sure, you’re ok?” I replied, “Yes, I’m good, just overdue for this infusion and I’m really tired.” and then they asked again…”Grace, are you going to be able to drive home after this?” I responded, “I’m not driving, I promise…my parents will be here in a little bit.”…. one more time….”Are you sure?”….. uh huh…..and I was out.

I woke up to my dad’s voice in the hallway calling out my name to see which room I was in. The minute, I saw their faces, tears came pouring out of my eyes. What the hell is this, why was I crying? It didn’t really matter, it’s not like I could stop the tears anyway. So I just let them flow.

I don’t remember anything else from yesterday. I know my parents brought me home. I know I ate at some point etc etc. and I slept. I really slept. I still don’t have the adjective to describe this feeling and I am going to let that be ok.

In the past two hours that I have been sitting here, drinking coffee and reflecting I have “learned” some thing about myself.

I can “handle” physical pain, but I do everything in my power to run from emotional pain, in fact, I think I have done this my entire life. I stay busy all the time. I go out of my way to try to make people feel better all the time, because I can’t handle tears. I can’t handle watching someone who is grieving suffer. I literally would rather go to the dentist, get shot, jump off a cliff, you name it, than to FEEL emotional pain.

My first thought, was “that’s just pathetic”. But then I asked myself, “Why?”. Who says it’s pathetic? Seriously, who’s voice is that judging and belittling me? The voice was my own. There is no one to blame. It’s that VERY FRICKING LOUD “little voice”, in my own head trying to sabotage myself. When I type it out in black and white, it looks just plain silly.

Ok, so I have some work to do on myself. (But not today). Today I am going to just be. I am not “planning for tomorrow”, or “thinking about yesterday.” Today, I am just going to be.

We must have a bad connection

March 4, 2018March 3, 2018 ~ msgracefulnot ~ 17 Comments

It’s so easy to tell people “don’t over do it”, “take it easy”, “slow down”, or “don’t worry”. I know it’s easy to say, because I tell people those things all the time too.

My brain tells my mouth to say it, and words come out. For some reason though, my ears do not pass the message on to my brain. (or something like that) Something is definitely NOT working, the dots are not connecting….. smh

“Don’t over do it”, translates to

your pain is manageable today, you better get that done while you can
you don’t know WHEN you are going to feel this way again, so do it NOW!!!
fucking MS smh
but you are SO close to being finished, just do one more?!?!?

“Take it Easy” translates to

It’s ONLY laundry, how hard could this be?
I will only make ONE phone call (never mind that you are going to spend an hour on the phone waiting for a live person)
or getting “pissed off” because NOTHING FEELS easy….grrrr

“Slow Down”, starts the process of

but there is so much to do
never enough time
but RIGHT NOW I feel OK

PART of it is MS, part of it is my personality. I HAVE to make the MOST of each day! I HAVE to feel like I am contributing SOMETHING to the world, instead of being a burden! Some days though, I’m just bored or “stuck in a rut” I feel that pushing myself and pushing my limits will make me FEEL more alive.

I take the GPS estimated time of arrival as a time trial challenge.

So for those of you that also struggle with this “disconnect”, how do you manage this? How do you “slow down” and not overdo it? How do you try to “save” your energy for later?

I have heard (and said) that I should Prioritize and focus on One thing at a time. Ok, here goes, my main goal is to be able to Walk down the aisle at my daughter’s wedding next weekend. My eye is on the prize so to speak. I have set up my week with one thing each day and tried to space the “working days” in between the “recovery days”.

Monday

I have my Tysabri infusion at 9 am. Because I know that I will be “wiped out” for the rest of the day, my mom is coming out to drive me and take me home afterwards. That’s it! That’s my whole day.

Tuesday

I am installing 5 electrical outlets in my house. Since most of my furniture is just kind of piled in the center of the rooms, now is the time to do it. While I have pulled wires, and connected outlets for years, I do still need help. My dad is available to help me before his surgery, which has been rescheduled for March 20th, so now is the time. Unfortunately, this will involve some more climbing in my attic. Definitely a Working day.

Wednesday

I am getting my nails done for my daughter’s wedding. I haven’t done this in years, but if memory serves we correctly, it is a somewhat “lengthy process”, meaning forced RELAXATION time. If I am able to “lose the boot” as planned, maybe even a pedicure?

Thursday

One Doctor’s appointment with my chiropractor to try to adjust any “damage” I might have caused my body over the week. I have to pack for the out of town trip and that’s it.

Friday

Out of town for the wedding!!!!!

So there it is. I have prioritized. I have planned minimally, allowing myself several rest breaks, and I have “my eye on the prize” Wish me luck?

Will I ever learn?

March 2, 2018October 5, 2018 ~ msgracefulnot ~ 27 Comments

Will I ever learn patience or to slow down?

Nope, probably not. (Hey don’t shoot me, I’m being honest here) My whole life I have struggled with patience, and I have always been “in a hurry”. When My MS is at it’s worst though, my body won’t allow me to be impatient or in a hurry, and when I try to, I get hurt.

Yes I got hurt again 😦

I got hurt, but I’m not dead. I will explain what happened in just a moment, and you can even “yell” at me if you think it will help, but first let me explain, well try to explain why I did it.

So I wrote the other day that a trailer “fell into my lap”. I had help for a couple hours, I moved what I set out to do and that’s all I was going to do. My dad told me that since he thought he was having surgery the trailer was free for a couple weeks, and I might as well have the kids drop it at Einstein’s since he wouldn’t be using it. (That way I could take a “slow and steady approach” to loading it.) Thing 2 and her boyfriend “D” dropped the trailer off in Einstein’s driveway for me, when they were done moving the bikes.

Just because I am proud of my daughter I took a video of her backing the trailer in. This is funny to me because “D” doesn’t “trust her” to drive HIS Truck, but knows she is better at backing up a trailer than he is….That’s MY GIRL!!!! but I digress….

BUT THEN….

The temperature changed, not just the outside weather temperature, but the temperature in Einstein’s house wasn’t as frigid. I will write more about that another time and in another place, ( I think a new blog is coming ) but the verbal knives weren’t flying anymore and I started “getting cold feet” about leaving, so I HAD TO GO.

Einstein had been complaining about where the trailer was parked, and had even tried to move it by hand…. I did not say out loud “THAT”S NEVER GONNA HAPPEN”….but it did inspire me to make a call….

There was help available. A young man that I had friended a year or two ago while I was taking classes, was willing to help me move. We will call him “J”. (He said, “Hell I’ve got a truck, trailer, and plenty of friends”) just pick a day. That’s something that I would say, not something I am used to hearing so….ok “How about NOW?” came out of my mouth.

and that’s how it all began……

When you have help you take it!!!! “BUT don’t you EVER take help without working your ass off just as hard as the person who is giving you help!!!!” This one I think was literally beat into my ass as a kid, so no way is it going away anytime soon.

Einstein was NOT happy that I was having a “DATE” (as he called it ) over to help me move, so it was only “J” and no friends. Einstein moved most of my furniture to the doorway in preparation. (Did I mention a new blog coming soon?….when I don’t live in HIS house)

So the trailer was quickly loaded, and my car was filled, and off I went. Almost all of my furniture that can not be strategically shoved in my car has been “deposited” in my new place. (Of course it wasn’t until I had set up my big comfy couch that I realized there is no electricity run to the wall of the west side of the “living room”) But that is another story for a different day.

So what did I do?

I worked my ass off!!!!….and then some….I THOUGHT I broke my foot again. I remember the doctor saying, “this is going to hurt a bit”, as he stuck a needle in my foot. There was quite a bit of pain. (enough to make me vomit and then pass out) His orders were keep it elevated and iced all day. Back in the boot or use your wheelchair for one week…and of course take these drugs. I give in, not up, but I give in…for now.

The “moral” of the story is I did what needed to be done and now my body says IT’S done. I didn’t PURPOSELY over do it or rush. It’s so hard not to “overdo it” when you ARE feeling well, considering you KNOW that the “NOT feeling well” is just around the corner.