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”.


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.


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.


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?


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.


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?




Thank you for your support

Earlier this week, I hope you saw the wonderful guest posts by Steve Markesich @ MSich Chronicles, Alyssa @ fightmsdaily, and Alex @ MS with Ms Alex If you missed their posts or have not seen their blogs, please take a minute to check them out!  These people are not only positive inspirations to those of us living with Multiple Sclerosis, but for me they have all become friends outside of the blogging world.  Alex and Steve have heard my tears, and offered their support and encouragement on numerous occasions.  Alyssa sends me frequent messages ‘just checking in’.  It is SO helpful to know that you are not alone when you are struggling!!!!!

Hope for the best, but plan for the worst

Something that MS has taught me is to try to plan ahead…to prepare for the worst, while hoping for the best.  I knew that this last week was going to be difficult for me: recovering from my own surgery, taking care of my father while he recovered from his surgery (which was cancelled and rescheduled), packing and moving, slump week, etc etc, so I reached out to my friends and asked them for “help”.

Asking for help is so hard

Even when I write about “not fun” or painful subjects, I try to keep things “humorous”. I didn’t want to feel as if I HAD to write something, so as hard as it is to ask for help, I am glad I did. (trust me if you were in my head with all the mood swings etc , you would block me, ignore me, or otherwise, cut me out of your life, so I decided to “remain silent”)   I won’t claim that  having my friends guest blog,  helped me FOCUS, but it did allow me time to try to wrap my head around everything that is happening, and to start getting “shit” done.

Better than I hoped

While I knew that my fellow bloggers would not disappoint with their pieces, I was surprised at the things that I learned from their writings.  I really wish I had Steve’s letter to himself (pre-Ms) when I was diagnosed.  It really is great advice!!!!! Alyssa’s Guest blog about the things she has tried for MS reminded me that we are all different, and that MS really is a snowflake disease.  (I’ve said it before, but it really hit home)  You have to fight for yourself, and what works for me, may not work for you.  Finally Alex’s post called the do’s and dont’s of MS, in which she shares how her “attitude” and sense of humor keep her going.  Alex is not only determined not to let MS define her, but she kicks ass for everyone around her as well.

THANK YOU again my friends

Thank you! Not only for taking the time to share on my blog, but for making a place for me in your lives, and helping me get through this rough patch.  I really did accomplish a lot, the worst events of the week were the alone time (when I was left alone with my thoughts)

tetris in a car BUT each day, I filled my car from floor to ceiling (hindsight says that was probably not the smartest way) and drove to my “new” place and unloaded my car.  Some days I even managed a second trip.

To “keep things interesting”, let me add that this move is  “double duty”.  Before I could move anything in, I had to begin emptying and cleaning the things that were left behind including the the ceramic tiles and tub from a bathroom.  But YAH, I am making progress!!!