Monday, May 11, 2015

Florida Family Vacation...National Lampoon Style

Better late than never!  It's been over a month since my last post.  I hope to be much more consistent than that, but life with Fibromyalgia happens.  :)

So, since I last posted, my family and I went on vacation.  It was our first big family vacation since we had our daughter (who is 7 years old).  We had an amazing beach vacation in Florida!  Sounds wonderful and relaxing right? 

Well, anyone else who suffers from FMS/CFS (and all the many ailments that go along with) knows that traveling is not easy... actually it is usually torturous.  I was VERY blessed to be able to participate in all but one afternoon of our 9 day vacation.  But when we got home, I paid for it... for three weeks.  Still, so very happy with the trip and the memories we made. 

We drove there and back.  We had some adventures and even visited some friends along the way.  Our daughter traveled better than I could have ever imagined... and so did I.  I drove some then slept some.  It worked out quite well. 

We enjoyed some beautiful sunny weather and gorgeous beaches.  We learned a lot about the local animals and their habitats.  The trip really refreshed my soul... but plum wore my body out.

On the way home things headed down hill... first was a sore throat and cough... then came a terrible rash.  By the time we were about 3 hours from home I was miserable, and my husband was convinced I was dying from some strange sea creature disease. 

While it was no fun coming down with the yucks on the way home, I wouldn't trade the trip and the memories for anything.  I am thankful for all that I have learned on my journey with FMS/CFS.  I paced myself.  My husband and daughter took it easy too.  We ate nutritious meals and snacks, and we got plenty of sleep.  I did not approach the trip like someone who does not have a debilitating disease.  I tried to be realistic of my limitations, and in turn I was able to enjoy vacation.  Being sick for three weeks after is just normal life for me.  A life I wouldn't change much about (except for the life altering illness part).

Now, we are heading in to summer, and I am again planning summer fun with my limitations in mind.  My family is learning to go along for the ride as well.  This is just the journey we are on.

The priest answered them, "Go in peace.  Your journey has the Lord's approval."  -Judges 18:6

Tuesday, March 24, 2015

Not Guilty!

I feel guilt almost constantly.  So, I have to continually work to let go of that guilt.  I hope that using this blog as my writing outlet can help me work through some.  And maybe I will find some support through others out there experiencing the same thing.  More importantly, I hope to be a source of support and encouragement.

What is it I feel so terrible about?  Number one is that I lack the energy to do things with my daughter.  I miss a lot of family fun and outings.  That sounds so sad...but in reality, we make fun times at home and do things that don't require more than I can give.  What I do is make sure to spend time reading and learning with her.  We spend time focusing on our relationship with God, too.  We make it work, but I still feel guilty that it isn't as active as other mother/daughter relationships.  Silly, but the feeling is real.  The next thing on my guilt list is the ever growing responsibilities of my husband.  He has to jump in and handle things when I can't, like additional house work or running errands.  Next, I hate that I can't keep my house as neat and clean as I like it to be.  I miss being able to make plans and keep them.  I cancel more times than I get to participate.  I miss working!!  (Now, you all are thinking I'm crazy, right?)  But, really I miss working.  My job was my passion.  I am one of the few blessed people who get to do what they love for a living...except my body doesn't allow me to do it anymore.  I feel guilt for not contributing financially to our family.

I just can't keep up.  I feel the pangs of guilt as I watch from my bed, or my couch, or my recliner while life passes me by.  Anyone feeling this guilt with me?  Well, I didn't cause my FMS/CFS, so I am going to stop taking the blame for it!!!  Anyone feeling that freedom with me now?

I know I am not the only person with FMS/CFS who feels the weight of guilt piled on top of our numerous health struggles.  The battle is real.  So, how can we uplift and encourage ourselves and each other?

Let's start by showing ourselves some kindness.  Then, let's truly forgive ourselves!  This was not a lifestyle choice, but let's not be victims.  It is time to slowly work towards acceptance.  I don't have all the answers (obviously!), but I plan to start accepting my "new normal" and working with what I CAN do each day.  Maybe all I can do is show kindness and encouragement to someone else facing their own struggles.  Well, I would say that makes a pretty productive day.

Finally, brothers and sisters, rejoice!  Strive for full restoration, encourage one another, be of one mind, live in peace.  And the God of love and peace be with you.     - 2 Corinthians 13:11


Friday, March 20, 2015

A New Normal?

Until this point in my Fribromyalgia (FMS)/ Chronic Fatigue (CFS) journey, I have had flares that lasted 4 weeks maximum.  Then, I would feel some relief for a a while.  I would slowly get back to my daily routines.

Sadly, I am currently experiencing something different.

We are about 12 weeks in to 2015, and I have been experiencing some severe symptoms the entire time.  My exhaustion levels have been at a 9 (on a 1 to 10 scale with 10 the highest).  I have severe pain daily.  And I am not yet seeing much relief.

I am beginning to think this is my new normal.  Maybe my disease has progressed?

So, instead of complaining, worrying, and feeling sorry for myself, I am asking myself this...
How do I handle this "new normal?"  What can I change to make my daily life a bit simpler?  What new responsibilities can my family members take on to help?  What are my priorities?

I think it is very important to check in with ourselves regularly.  Have you recently taken inventory of your priorities?  This "new normal" may not be how I would live in an ideal world.  But it is not beneficial to fixate on what I can no longer do.  I may have to remind myself ALL THE TIME, but I want to focus on the positive.  I need to accept myself, be kind to myself, and love myself.  You should strive for these things to.  We deserve it!

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things.     - Philippians 4:8

Monday, March 9, 2015

Welcome

My journey with Fibromyalgia and Chronic Fatigue Syndrome began over 10 years ago.  I can look back now and easily see where I experienced issues with Chronic Fatigue even in college.  I was not officially diagnosed until 2004.  I was 24 years old.  I was dealing with a variety of symptoms and health issues.  It was a very scary time.  Going through such extensive testing for numerous different diseases was quite the ordeal.  When I first received my diagnosis, I thought I was relieved.  It was nice to have a name for what I was feeling.  I really had no idea how much this illness would change my life.

I used to be a typical Type A overachiever.  Fast forward 11 years, and my brain still wants to be that Type A woman.  My body, however, has very different plans!  Attempting to find a balance between the two can sometimes leave me feeling depressed, defeated, angry.  The list of emotions could go on and on.  I truly aim to be a positive person.  When I picture myself, it is a picture of a happy, funny, outgoing (much thinner) woman.  But so far in 2015, this positive attitude has eluded me.  My health seems to have taken yet another downhill slide.  I have been wondering how much I can actually handle. 

Thankfully, I have a couple of people in my life with who listen well.  They are encouraging yet honest, and remind me that I need to focus on having a thankful heart.  I have to redirect my thoughts away from the negative that so easily sneaks in.  I have to reprioritize and find new ways to keep my mind active even when my body says it has no plans of being productive.

Thus, this blog is born. 

I am still working out format and other details.  I plan to add some educational links on Fibromyalgia and Chronic Fatigue Syndrome.  I hope to post weekly, but anyone who knows someone with these health issues will know that I may not always be on time.  But I will be here.   Posting as I can.  Educating.  Encouraging.  Inspired but tired! 

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future..."   Jeremiah 29:11