I’m irritated.

My husband had a week-long conference in Lancaster, Pennsylvania and we took the boys with us.  My DD decided to stay home because she had a ton of homework to do and one of her teachers wasn’t pleased that we wanted to pull her out of school.  He assigned her an extra report, so she decided to stay home.  Thankfully, my parents were willing to stay with her.

So, last Saturday, we drove south to Lancaster. 

Pennsylvania is a beautiful state.  Even in crummy weather, it’s a beautiful state.  I don’t think I’ve ever driven through Pennsylvania before, and if I had, I was probably too young to remember.  It’s important to me to see everything I can, so I did my best to stay awake the whole ride.

My husband (I’m calling him Boris in case you haven’t figured that out yet) insisted on driving the whole time.  Normally I don’t like that, but this trip I didn’t care.  I wanted to take in the sights.  We don’t have big mountains in lower Michigan and I couldn’t wait to see them, so I was fine with him driving.

Even in the rain the mountains were beautiful.  Going through the tunnels was really cool (though intimidating knowing all of that weight was on top of us).  In what was supposed to take us 12 hours, we arrived at our resort in 10.  It was a perfect day!

Sunday we went to Mass as a family.  Anyone who knows us knows my husband doesn’t go to church, but he came with us and I’m so glad he did!!  We went to St. Anthony’s of Padua in downtown Lancaster.  The priest was wonderful and so was the music.  We then drove around a bit, went shopping at the Outlet shops, ate at Five Guys (LOVED IT) and explored the hotel and the hotel grounds with a two mile walk.  I hopped online to get directions to the Baltimore Aquarium.  I had promised the boys a fun-filled day at the aquarium and needed to plan.

In my next post I’ll go into detail about what we did each day (and I’ll even include pictures) but what I want to concentrate on with this post is how exhausted I’ve become since my NMO diagnosis.

I am someone who is go.go.go.  Nonstop movement.  I fidget.  I toss and turn.  I do NOT like to stand still.  The main trigger with my panic attacks is me being stuck somewhere.  I have to be able to move!  On every vacation I plan something to do everyday and that activity normally lasts the entire day until we all collapse in the evening.

With NMO, I can no longer do that – I found that out this week.

Monday we drove out to Baltimore where we went to the National Aquarium and then headed on over to Fort McHenry to learn all about the fort and the National Anthem.

Tuesday was planned to be a slow day.  I figured the kids would be tired from the previous day and would want to swim in the pool. Plus it was raining all day and I didn’t want to go anywhere in the rain.  The kids swam while I read for most of the day.

Wednesday I had planned to take the kids to Philadelphia to see Independence Hall.  Instead I was hit by a mack truck with extreme exhaustion.  I couldn’t get out of bed.  My husband was worrying about me and actually skipped part of the morning conference so I could nap.  I honestly don’t remember much of the day other than I slept.  Boris had a meeting in the afternoon, so after my nap I was able to take the boys out to a bakery.  We got a whoopie pie (Oh my word – heaven!) and then drove around Lancaster to see the sights.

Thursday – we went to Philadelphia to see Independence Hall.  We spent the majority of the day there arriving back at the hotel at around 6:30/7:00pm.  I went to bed at around 9:00pm with plans to go to Valley Forge the next day.

Friday – pure exhaustion.  Again, I couldn’t lift my head out of bed until NOON!  The boys played on the computer and with their new Revolutionary Army guys.  They were probably loud as can be but I slept through it all.  Boris’ conference ended at 1pm, so he took the boys mini-golfing and swimming so I could get more sleep.  I took ANOTHER nap and was finally coherant at around 6pm.

Today we drove back from Pennsylvania and I’m tired again, but not ridiculously tired like I was yesterday.

I have a theory:  the day after I take my prednisone I feel “normal.”  I took my prednisone on Sunday, so Monday was a GREAT day.  Tuesday was fine, but I’m thinking it may have been a good day because I accidently took my prednisone two days in a row (Sunday and Monday).

Wednesday was a bad day (no prednisone on Tuesday), Thursday was awesome (prednisone on Wednesday), Friday was exhausting (no prednisone on Thursday).  Today has been a fine day with the exception of major tingles when I walked across the parking lot to the Rest Area (prednisone yesterday), so I’m assuming tomorrow I’ll be exhausted again.  Now, prednisone may have nothing to do with it.  I could very well have had those great days because I had gotten rest too, but the prednisone makes me HYPER (I can feel it now – it’s 11:35 at night and I’m a little hyper).  Is it the prednisone?  I don’t know, but right now, I’m feeling like it is.  I’m concerned that once the Imuran takes full effect and I’m pulled off the prednisone, am I going to be able to function at all?

Tomorrow is Palm Sunday.  I am NOT missing Mass tomorrow.

So, I need to figure out how to overcome with this exhaustion.  Do I push through it?  Do I listen to my body and rest?  I’m not sure of what to do.  Dr. W. told me I need to get as healthy as I can and that includes exercise.  Should I start exercising regularly (of course I should) but will this help me overcome the exhaustion?  My plan is to start walking 1/2 hour a day  – just from my house to my neighbor’s house, back and forth, so if I get tired, I can just come home without worrying about getting stuck someplace.

I also plan to lift free weights.  Just 3 sets of 10 reps every other day.  Hopefully this might wake me up a bit.

I’m not ready to give in to NMO.  I know that the clock is ticking now, so I want to enjoy as much of my life as possible – especially when my kids are still young.  I don’t want them remembering their mother as “that lady who slept the day away.” 

Auto-Immune diseases – well, they just stink.

This entry was posted in Devic's Disease, Neuromyelitis Optica, NMO. Bookmark the permalink.

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