Monday, June 27, 2011

Grandchildren, Travel and Pain - They Can Go Together. If You Plan It Well

We live about a three hour drive from our oldest three grandchildren and about a two and a half hour drive from the youngest two.  It goes without saying that they are the apple(s) of our eye(s) and we miss them terribly.  Up until now, it's been really hard for me to visit the oldest three  I've still not visited the youngest two although Grandpa made the trip last week.  I had not seen the oldest three in at least six months.  Since my pain had stayed in the Level Four to Level Five range for most of the month (I even had some Level 3 days!), Mr. Supportive and I decided it was time for me to come see the oldest three.  I posted about Mr. Supportive's theory that the heat was really getting to me plus the depression from both the Fibromyalgia and not having seen my grandchildren in so long wasn't making dealing with the Fibromyalgia any easier. I was in the delivery room when each of them were born and even cut the cord of my youngest granddaughter.  We seem to have a lot closer relationship than some of my friends do with their grandchildren and I want to keep it that way as long as I can. I've always had a close relationship with my daughter and I missed seeing her.  She's been up several times in the winter and spring to help with deep cleaning I can't physically do and also helping me get rid of a lot of clutter in closets and kitchen cabinets.  She's really brutal!  Monica has watched so many episodes of TLC's Clean Sweep that she sounds like Peter Walsh, the organizer on the show.  She is good enough at it that she could to it for a living.

We decided that I would come down so I went on line and made a reservation for the City of New Orleans and was able to specify that I wanted a lower.  I am so glad that I'm able to ride the train from Memphis to Jackson.  It's the only way I can make the trip without a lot of pain.  If we go by car, I end up having to stop every hour or so to walk around so that my muscles don't get stiff.  Sometimes stopping doesn't help.  On the train, I can get up and walk around, keep my feet elevated using the foot rest, use the restroom, get something to eat and most importantly, I can stretch out and take a nap.  Usually, I take a nap all the way to Jackson.  Since there are 110v outlets beside each seat, I am able to plug in my CPAP and get good sleep.  

This trip I was finally able to get a Lower Level Coach Seat.  I was really excited because they have always been sold out when I traveled. Having my seat on the same level as the rest room was awesome.  It takes way more effort than I have to give to get up the stairs to my seat and back down again. Not having to deal with that made it so much easier.  The train trip can push my pain level up but this time it didn't  and I know it was not having to walk the stairs that made it easier.  When I got on the train, my pain was Level 4 (my "normal") and when I got to Jackson it was a Level 5. We came straight to my daughter's and after saying hello to everyone, I took a good nap.  When I woke up, my pain was almost back to a Level 4.  By the next morning, I was at Level 4 again.

I promised my oldest granddaughter, Anna, that we would sew today so I'm off to do that with her. It makes me so happy that she is interested in learning this timeless art. The rest of this week I'm going to talk about how I've explained to the 7 and 9 year old what is wrong with MiMi and why I have to take more naps than they do.  It is my hope that others will read this and then take the information and apply it to how their family deals with Fibromyalgia.  We found that even at 4 and 6 they were able to understand basic explanations.  For instance we started out telling them that my muscles and legs didn't work right anymore so I couldn't walk and run like I use to.

Grandchildren can be taught about your pain and limitations.  Doing so rather than ignoring the situation will make a huge difference in everyone's happiness and enjoyment of your time together.


I've decided to keep a photographic record of how my Lymphedema is doing each day. I'm putting it at the bottom so that it is easy for those who do not have it and/or have a weak stomach can avoid it.  The picture shows how the skin across the top of my feet is so tight that it's shiny. I keep them elevated as much as I can but in hot weather it doesn't seem to do much good.  I'm drinking lots of water but it doesn't seem to be helping.  Thankfully keeping them propped up does keep the pain down.  I am most concerned about the way they are a light red color from my shins down.  I've also noticed a place like that on my left leg just above my knee.  The light red color is a sign of cellulitus so I'm keep a good watch on that.  I forgot my tape measure and my 4 year old granddaughter decided to cut her mom's into little pieces. Tomorrow I'm going to get a tape measure and I'll begin recording the size of my legs.

1 comment:

  1. oh my goodness, seeing the photo of your feet is like what mine look like. My feet are so painful that I can't walk very far. I don't know what to do with myself, it's driving me crazy. Thank you for sharing your life. Cheers Clare


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