A very LONG walk

I don’t know if I have ever talked about it before, but I used to be STUCK in a wheelchair.  It was 2009, before I started Tysabri Infusions.   I won’t give all the credit the that I am again walking to Tysabri, but it has been very effective at slowing down the frequency of my MS flares and relapses.  There was also a stay in a rehab facility and a solid year of physical therapy 3 x a week once I was discharged.  I have also been on Ampyra for, hmm I don’t know how many years as well.  (If you have never heard of it, Ampyra is known as the “walking drug” for MS.)

A few years ago, I had worked up to being able to walk for a full mile at a time without having to stop or take a break.  That’s NOT to say I wasn’t ‘down’ for the rest of the day, or that there were not a few falls ( and bone breaks ) involved, but I went from wheelchair to walking, and I was so proud of myself!!!!  I had even begun taking my dogs for my morning walk, until that ONE DAY!

When I woke up that morning, I didn’t really feel like walking, but if therapy taught me anything it was IF YOU DON’T USE IT, you LOSE it.  So I dragged my ass out of bed, brushed my teeth, coffeed, leashed the dogs, and headed out the door.

dogsWhen my dogs went through obedience and therapy dog training, they were each ‘assigned’ different sides, D. O. G walks on the left, and SNUFF walks on the Right.   (in the picture  they are reversed) I wrapped each of their leashes around my hands tightly, and would soon find out that I had made a HORRIFIC mistake in doing so.

Both dogs could sense that I wasn’t feeling well and weren’t behaving as well as they normally did.  (They were competing for my attention and walking under my feet.)  I was very grateful to be rounding the last corner of the block  (I was less than 200 feet from my front door)

The “Scene of the Crime”

sceneThis building was a barber shop, and the barber had come out to empty his trash.  When he saw me he waved and called “hello” as he did 100 times before.  For some reason, both dogs pulled in different directions and down I went…… literally something like this….

faceplant

I landed directly on my chin and was pulled/dragged toward the un-offending man while he ran back in the store.  (In his defense, he did TRY to come back out to help me up, but the dog’s seemed to have lost their minds when I fell and would not let him anywhere near me)

Somehow I got the dog’s under control and was finally able to stand up and limp home.  I made it in my front door, called out to thing 2 and immediately collapsed again.

(to be continued)

I don’t think I made it clear when I posted this, this was a couple years ago.  Sorry if I mislead anyone

 

 

 

 

Teaching my phone to swear

Those of you that have ever talked to me on the phone, in person, gotten a text message from me etc, know that I have a “potty mouth”..  Not only do I frequently talk about “potty” and my bag of pee, but I just can’t seem to utter more than a few sentences without a cuss word or two popping out.  Popping, not pooping, although I do talk about pooping or not being able to alot also.

Last month, or the month before, I had to do a warranty trade on my smartphone, which in my opinion is Not very smart, although some would claim operator error. 😦

I have always struggled with the talk and type technology, because I speak quickly and do not enunciate.  This was proven when I asked my kids to “fix the damn phone” and they politely explained that I don’t enunciate when I speak.  To prove them wrong, I turned on the talk and type and said “ENUNCIATE”, the phone responded by typing E9C8!

SMDH AGAIN!

So now I have this ‘New’ smartphone AND I am cutting down on the number of cigarettes I smoke each day, in effort to quit on August 15, 2018, so needless to say I have been swearing a bit more lately.

After talking out a message that contained some “cuss words”, I forgot to turn off the talk and type feature on my phone before I said,

“It’s not duck, the word is fuck.  I really don’t understand your objection to ass, and on that note what the hell is wrong with shit or even hell?  It’s not like I used all the words in one sentence”

My phone typed….

” It’s not duck, the word is duck.  I really don’t understand your objection to ASK, and on that note what the he’ll is wrong with fit or even ****?

Immediately after reading that I said, “Bastard”, which for the record translated into “Last Turd”.

So I have decided to teach my phone to swear.  I have been correcting THEN saving each of the words that it misspells or ***** out.  So far I have added

piece of shit

fuck

shit

damn

hell

I cant say the C word, but it would probably come out as CANT anyway.

This morning I said, “I am coffeeing” which I know is technically not a word (its a way of life).  The phone typed doddering…which I left because I probably was.

Can you think of anything that I am missing?  When the day comes that I am finally ready to tell that ONE person that got on my last nerve off, I want to be prepared.

 

How did I get here?

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.

codependentyThose 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

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.

time to beat

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?

 

 

 

A Trailer “fell in my lap”

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.  real truck

(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