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.

A Trailer “fell in my lap”

February 27, 2018October 5, 2018 ~ msgracefulnot ~ 17 Comments

Ok not literally, but YAH I have a “Free trailer”

I have mentioned before that I grew up “in the sticks”, and I have also alluded to the fact that I was kind of raised as a tom boy. I know how to drive a tractor, trailer, dirt bikes, 3 wheelers, and even a skid loader. My father owns many of these items, but in his “old age” I think he has “forgotten” how to use them. I am being very sarcastic here, because he still uses them all the time, except for in the winter. For some silly reason, he no longer takes his truck off road, he barely takes it out in the winter for fear of rust….SMH (more sarcasm) AND when he bought his newest truck, he bought one with only a 6 foot bed.

(The guy who raised me telling me that if you couldn’t fit a full sheet of drywall or plywood in the back of a truck it wasn’t a REAL Truck, bought a truck with a 6 foot bed!!!!!!!!) SMH He even owns two plows, but doesn’t drive his “new baby” in the winter?!?!??!?!

Figuring I still had a few more weeks of winter before I had access to a truck and trailer, and the ‘silly doctor’s’ “don’t lift 15 lbs for 2 weeks limit” I’d been packing a little here and a little there to try to respect the doctor’s restriction, so I had stacks and stacks of rubbermaid totes all over Einstein’s house. ( a few in this room and a few in that room) but then a trailer “fell in my lap”….how could I resist?!?!?

Thing two and her boyfriend “D” were using D’s truck with my father’s trailer to move a couple motorcycles and I “conned” D into giving me a couple hours of his time in exchange for homemade lasagna. The ‘Catch’ was, I only had the trailer and D’s help for a couple hours…. hurry hurry hurry.

OK PRIORITIZE, what goes first?

Air mattress already set up at the new place…so don’t worry about the bed
You’ve got some clothes and essentials there so don’t bother with more ( besides they will fit in your car)
The most important non negotiable material things that I need a trailer for are my Grandma’s kitchen table and my desk (both had to be disassembled though) So I decided to start there. I went into the office…and froze… OMG this is real.

Anxiety Can Paralyze You

I immediately started having doubts. “Were things really that bad here?” “So much work, for so many years….shouldn’t I try harder?” It didn’t help that Einstein has been the man I fell in love with for the last couple weeks since I said I was moving, he even tried to take care of me post surgery and cooked me dinner?!??! (ftr this has NEVER happened) He helped me with a 3 d printer design and and and….. oh no….NOT AGAIN….. You’ve got this Grace. So I froze. and then I stopped breathing….wtf?!?!? I was just about to walk out of the office making excuses that I should follow doctors orders blah blah blah and then not one but two familiar faces popped up on messenger….”Just checking on you grace.” Suddenly I could breathe again. (This anxiety shit really is no joke.)

The Therapeutic Power of Music

I selected random play for the music on my phone and Kesha “Praying” came on. ( I am in no way religious, although maybe it would be helpful if I was, I am not. It doesn’t change the fact that the song is incredible and something I will continue to listen to) If you have a second, the link is for her official video, and for me it hits home. The next song was “New Rules” by Dua Lipa, followed by “Not meant to be” by Theory of a Deadman. Before I knew it the desk was not only disassembled, but I had dragged it out of the “office” to the front door. I set up a card table where the desk used to be and reconnected my computer. The legs were removed from my Grandma’s table ( I couldn’t dream of moving that by myself though, WAY TOO HEAVY) But I did it!

One Step at a Time

The Finale is really only the beginning

February 26, 2018February 26, 2018 ~ msgracefulnot ~ 9 Comments

As I sat trying to figure out how I was going to move ALL of my belongings from a however many foot ranch with a full basement to a one bedroom “apartment” ( kind of) I felt like a teenager again. My coffee pot is set up in the bathroom (to try to conserve space) but yah closer to where my desk will be set up? I am trying to look at this as a fresh start where anything is possible. Sure it’s scary, most new things are.

I am/was struggling with what material things need to come with me and which ones will go to storage. But yah that will help me focus on what is most important to me?

The photo albums do have to come!

Actually I think I am going to start scrapbooking again as a healing tool. Originally, I started scrap booking ( more picture taking with LOTS of journaling) for my children. In addition to being diagnosed with MS at 26, I was also diagnosed with cervical cancer AND my kidneys were being damaged because of my inability to urinate. I was afraid that I was dying and no one would tell them the “whole story” about their mother. I knew people would share the pedestal stories with them, but I also wanted them to know the one’s that I am not proud of, and about the personal struggles I faced.

I started making and filling photo albums, not only about my life but albums for each of my girls highlighting their birthdays, sports, Christmas parties, school events etc….who knew that I would end up with so many?!?!?!

I have scanned most of the albums to disk and tried to give the actual books to my daughters, now that they have homes of their own, but they don’t want to store them. They also will not let me throw them away….smh… Whoever said raising girls was easy, can kiss my ass!!!!!

To be honest, I don’t think I could throw them out either.

Ok so the photo albums are coming with me. (This is only one load in the back of my car.) The final deciding factor to bring them with though, is so that they will serve as a visual reminder for myself of all the things I have survived, and all of the good times I have had in my life for the days that I don’t feel strong enough.