Between Sleep and Awake

I go back and forth between being so ecstatic that I am actually starting to see improvement to being shocked at how much damage there is in my body.   I spend an evening out and that night or the next day am reminded about how fragile my body still is.  Normal things are hard on my body.  All of the functions do not work properly yet.  It is incredible how damaging Chronic Lyme Disease is.
      I had spent the last 10 years becoming sicker every year.  Now I can look back to a year ago and see improvements.  It is so hopeful.  It helps me to dream for my future.  It helps me relax about today.  It also makes me slack.  I have been eating things that make my body swell and have had a pregnant looking belly for the last month.  I know I should tighten up my diet but don't feel like putting in the extra work.  I am tired of it.  Lazy about it.  Unmotivated.  Then there will be days in a row I am so disciplined.  Part of the problem is I am also trying to eat eat eat to try to break the 100# mark.  I have been 95 pounds since at least last summer.    It makes it very hard to only eat veggies and meat (avoiding red meat except 2 times a week) and gain weight.
      In Peter Pan he says "You know that place between sleep and awake, the place where you can still remember dreaming?".   That is how I feel, stuck between 2 places, a bit disorientated, but excited.
I love being with friends and become energized.  Recently I have been well enough to spend time out with friends/family.  New Years eve playing games with friends, a birthday party watching friends play a dance game, indoor waterpark with my kids, end of the year celebration with our team with dinner and dancing.  All of these have in common: foods that don't quite match my diet, me standing and turning my neck frequently.  It is amazing how those little things can take so much out of me and leave me in a recovery mode for days after.
       Balance in life is what everyone toils with.  I am thrilled that I can get to make choices and dream of making even more choices in my future!   

Reality Check

My doctor appointment is in 2 days.  I leave tomorrow.  I am fortunate to be getting a quick ride on a lil airplane thanks to Angel Flight.  My trip home isn't scheduled yet so hopefully I am not stuck in Seattle.  Beautiful city, many friends but it wouldn't be a vacation (when they are all working) and I wouldn't have my meds.  Plus, I have a  friends Bday party Friday night that I gotta get back to!  Even if I am just sittin and hanging for a bit, I AM going!
 
Anxiety always fills me before my doctor appointments.  It is a reality check.  I can float along and for moments here and there try to forget how sick I am.  But it is like I am on salary for a demanding boss, I really can't ever forget my work.  I know I should have been making some different choices since my last doctor appointment.  That is how I measure things, every 2 months.  But I have been distracted, weak, unfocused, fighting with the reality of my days.

 I am still on the band wagon but have sure tried to hop off a few times.  I have been cheating and eating sugar in the form of my addictive enemy: The cookie.  I have not been going for my small walks unless I feel up to a longer walk.   I have been having daily conversations/arguments with my meds 5 times a day.    

New year brings new chances.  In the small, daily moments, I want to be more at peace with living with Chronic Lyme Disease.  I need to go back to cooking healthy huge batches of soups and freezing them.  I need to use some type of simple schedule to remind me all the different health/detox things I need to get in throughout my week.  I need to remember to nap in the afternoon and not push through to try to DO something around the house.  I want to meditate in the mornings and calm and focus my body and mind.  I want to stand up to that conniving lil bastard, sugar, and say NO WAY, I don't need you and you have no power over me, and be able to walk away.  

The good thing about seeing my doctor every 2 months is I re-evaluate my health and refine what "I" can do to help myself heal.  The bad thing is I am reminded I am sicker than the way I want to live.  My mind and body are filled with desires of things to experience and do but the reality is, I am too sick.  One of the my favorite things in the whole world is skiing.  I haven't been able to go for 12 years.  My kids are now learning to snowboard and I can't be up on the mountain with them.  It is a loss I have to mourn.  It is a hope I have for the future, to go down the hill someday with them.

The wonderful thing about having this particular disease is that I CAN heal.  It is slow, and a hard trek, but it WILL happen if I keep on keepin on!  And of course continue to get the incredible wisdom of my doctor!     

There is so much I CAN do!

December can be a hard time for just about everyone.  It might be the weather, darker days, a busy schedule, not enough time off work, not being able to stick to ones diet, or tension with extended family that is getting together for the holidays.  This month I am not the only one who is struggling  (or any month for that matter!).

It depends on my perspective because really, I am able to do so much.  Thanks to a newer friend who I got to see 2 times this week, my spirits are lifted!  I also was able to be creative with my daughter and cut a couple sweaters into leg warmers.  With the help of my son we are going to finish a mosaic I started a couple years ago.  My daughter and I have a couple more DIY projects lined up to do over her Christmas break.  Things that don't require too much from me but are fun to help her do!

As this year ends I think back to the goals i set for 2011 and look to this coming year to reach some new goals.  One goal for last year was to read at least one book a month.  When I was younger I wasn't interested in reading.  Then for the last 4 years or so my eyes would get blurry so fast that it took me a very long time to get through books.  This challenge to myself ended up being very fun.

My favorites:
 -I read almost all of Anne Lammots books.  They portray women searching for a honest way to live.
 -Finally, after my kids and husband pushed, I read the hunger games series.  I hesitated because I didn't want to read something that stays in a hopeless place.  Once I read, I discovered the series is about never giving up.  Incredible riveting stories!
- I finished the year with The Help.  I loved the way every person was shown to have a good and a bad side.  We are all human.

My main goal for this coming year is I need to learn to just BE.  I want to meditate more.  I want to calm myself completely at some point, each day.  I want to accept myself more, which in turn will help me to not judge others and accept them just the way they are.  I want to learn to be ok within the "unsettled" of life.

Yesterday, I got myself busy doing this and that around the house.  I had just realized that I had spent too long being busy when I suddenly felt light headed and out of breath.  Nearly the second after I understood this  my husband said "you shouldn't be doing all that!".  My defensive Nelly rose up and argued, "But it was important!".  With a smile and a kind voice he said, " No it wasn't!".  We went back and forth a bit and then he said, "Remember your 2012 goal to just BE?  If you were trying to do that you would look at all this stuff and be ok with it instead of wanting to change it.".

  And THAT is just why I need to have it as a goal, because in order to heal, I need to think long term.  Busying myself with a short term goal (ie. a clean kitchen) will give a itty bitty reward.  I have a big goal (healing) and I need a big payout.  So I have to stay focused on that and BE ok with letting go some of the little stuff.   In 2012 that is something I can do, actively practicing CALM each day.

To Dance or Not to Dance

My anger has given way to loneliness.  Now I am just tired of sitting on the sidelines.  I understand and accept I can't join groups I am interested in, and be more involved with relationship building activities.  Even doing a yoga class is too much for me.  Just the idea of getting myself ready and to the location would be a tiring thing.  And I can only do yoga or walking for about 10 minutes, any more and I pay for it in pain or fatigue later. I am looking for a book club and keeping my eyes out for other unique groups where I can build relationships yet not active.

I joined a site online, Pinterest, that allows me to view pictures posts on a variety of topics and them repin my favorites on my bulletin boards under different titles I have chosen.  For a year now, my doctor has been telling me to google images of things I love like Nature, Colors ect.  Pinterest has been a great way for me to do this.  I am rediscovering who I am (inside).  I have a board "Things I will do again soon", "Dream things to do", "Dream vacation spots" and a few more.  Those have reminded me a side of me I almost forgot.

I am active.  I like to play.  I like to be silly.  I am energentic.  I like to try new things.  I am a people person.  I love to ski, skate, hike, waterski, kayak, dance, run, swim, bike.  I have dreams to try more active things.  But the reality is right now I just want to be able to get through the day with out having intense pain that shuts me in my bedroom for the day.  I can't plan to do more.  I can wish.  I become impatient wishing.  Since I can't dance in the way I want to, I am trying to learn how to mentally dance in a way that will give me some of that same sense of fun and release.

Lyme Is #*%*tty!

     These last few days I have become pissed off at the Lyme in my body.   I have had this anger before but have found ways to sort it out and accept where I am at.  However, it is here again with a request.  It wants me to recognize it has the right to come around once in awhile, and it doesn't have to be Fun.
     The kids, Tim and I went to a store and were looking around at things for Christmas presents.  Tim said "Wow I haven't seen you this animated in awhile!".  I said "I am having fun!!".  Well, about a half hour later I had to find a place to sit down in the store and my eyes glazed over and face became expressionless.  He came over and rubbed my knee and sweetly said, "Ok kids, time to get mom home.".  It is wonderful he was ok with it.  However, I was not.
      I want more than an hour outing once a week.  I want more out of this season and more out of this life.  I don't like being on a special diet, taking nearly 100 pills a day & becoming worn out with small tasks.  I want a full life and don't feel I have it.  I am capable of so much more.
      That outing with my family was a week ago and each day since the bitterness has seemed to grow just a tiny bit more.   Part of me feels like my brain is supposed to just shut down for these years while I am healing.  How can my brain engage and grow and be used when I am obligated to do so many mundane tasks throughout the day/week in order to heal.  My schedule is busy with petty things.  I am like a baby with my need to ad- hear to a schedule.  But when I veer from it I push my wellness further into the future.  It makes it a costly choice.  How do I engage my brain in a way that doesn't wear out my body?  And how can I NOT waste my time right now?  I tend to feel like I am wasting time because I am not contributing financially (when we are struggling so much), not able to do household chores (which means everyone else does extra, mostly Tim & which I am so grateful for but I end up getting frustrated that the house doesn't look like I want it to) and I am not involved in activities/art/sports that excite my mind.
     I do not have that much "free" time with all the weekly medical things I have to do for myself.  And then with that "free" time I have such limited energy I feel like I need to budget out my time.  "Okay I will spend today's allotted energy on typing this blog and will have to wait until tomorrow to use more energy.  Tuesday I need to pick up my prescription and while I am there I might as well do a little grocery shopping.  But I should plan out what to get so Monday I will use my allotted energy to plan a meal or 2.   Hopefully, Wednesday or Thursday I will be able to cook some healthy soup because I hate to watch the veggies get old in my fridge."  If I get a few bad days I might not be able to cook until later and then of course the day I cook, I will have no energy for anything else.   I am poor in my bank account and poor in my energy account.
       I need to get out this anger in some healthy way and then get back to feeling grateful for all the things that make my life full of opportunities to smile.