#5 Something Someone Gave You

Something someone gave me?  Let me think about this.

Trying to think about things, details of the past (or even present) is hard for me these days.  I am not sure if this has to do with getting old, (not sure if under 40 is considered old…but I feel old) or if it is another side effect of my Ataxia? Or maybe just my burnout.  I don’t know.

The first thing (ok the only thing) that I can think of that someone gave me, was a bible.  A New Living Translation Bible, that is titled, the Spiritual Renewal Bible.

One of my aunt’s gave it to me, as I was admiring it, when I was visiting at a family function.  She just gave it to me, like it was nothing-“here you go”!  Wow.  That was so nice and thoughtful, but more so is the thought of what that bible means to me.

I have gone through many valleys in life, not too many peak’s.  I do try and be cheerful and loving through it, but I can honestly say life has not been kind in so many ways.  The dreams I had as a child….turned into nightmares.  Now I am left to pick up and keep going over and over as an adult….and I have been close at times and far at times from God…but He has been there all along.  Never leaving.  Always Faithful.

This bible is not just a gift, one from an aunt-who I really thought did not really think much about me…I am just another family member.  This family member who has walked away from God so many times. Well not walked away, just been very angry with God. Who has backslidden.

To understand you have to know my family.  That side.  They are the “goodie two shoes” side as I call it.  They appear perfect.  Or so I thought as a child.  Now I know different.  All of my aunts and uncles, have at least one child who has wandered away from God, done their own thing, and in some cases really screwed things up.  They are not perfect, and I am not alone.  I thought all this time, I was being judged by them when in fact, they see me equally and pray and hope my life goes well along with my other cousins.  The gift of this bible from my aunt, which maybe she didn’t even give a second thought about, was a signal to me that I am loved and cared about.

The bible itself, speaks to me on so many levels.  It’s a bible, how can it not?  I carry it with me to church, and at home. Do I read it as much as I should? No.  But it is the bible I use most of the time, and highlight, and even read the footnotes to go deeper.

The title, Spiritual Renewal, makes me remember that it is never too late.  Our spirits can always be renewed and need to be renewed and refreshed.

It reminds me, we are all loved.

Humph!

So I am taking a post off from my gratitude challenge posts.

Humph is how I feel these days.

All of life is crashing in on me and I don’t know where to turn or how to find my way out.  I have been on antidepressants for about two years, when my Ataxia symptoms started getting bad, when my sons issues for lack of a better term started ramping up, and when my marriage was at a crossing road….and now…..empty nest syndrome, husband working too much….work sucking….and facing I will never have another child, has left me worse off than before.

My stupid idea?  STOP taking my medication to try and get some sleep.  It seems that the meds were causing me to be overly exhausted and I could not sleep for about two months…..that is all I can chalk it up to as now that I have been off for two weeks, I am getting much better rest.  Still tired, but not as exhausted.  Crying alot.  But better rested.

So back to humph.  Where does one go with ones life when one has no clue why they are on earth, no purpose.  Oh sure my Christian friends will tell me God has a purpose for me. But seriously….He is being pretty silent in telling me what that purpose is.

Clearly it is not to be a mom again, clearly it is not to have a family….remember those stepkids are not allowed to consider me or my family part of theirs…..clearly it is not to be wildly romanced by my workaholic husband…..clearly it is not to accomplish any of the things that I set out to do.  Do I sound negative?  Damn right I do.

Just wish I could find that one thing that will give me a purpose.  Something to be passionate about.  I have tried getting into creative things, scrapbooking, coloring, cardmaking, photography, baking….those are all great, but they don’t really accomplish a sense of purpose.  They are fun things.

I want to feel needed.  I want to feel loved.  I want to feel alive.

Maybe I need an on the side boyfriend? LOL……just a thought.

Clearly I need something.

So it’s Friday…..

I made it through the week.  Mostly.

Living with a chronic illness is exhausting.  When I am in a dizzy spell, for lack of better term that people can understand.  When my eyes are having a soccer match and I can’t focus properly, (between 30-80% of my waking hours…varies by day) then my world is filled with exhaustion.

Ataxia in many people can be an invisible illness.  No one would know I can’t see or focus unless they paid close attention.  I push through it most of the time.  I make more spelling mistakes and I can’t read as often as I would like, but I can still function.  Because I persist through it.

All that persisting takes energy.  A lot of energy.  Keeping my balance during spells also takes alot of energy.  Most of the time I avoid walking or going anywhere when this happens.  That means alot of sitting.  Alot of gained weight (30 pounds since last year).  The best thing ironically for this disorder is…..wait for it…….exercise.

So it’s a catch 22, can’t prolong or better my quality of life unless I exercise, but exercise triggers my symptoms.

And so it is.

Working full time is a challenge, a challenge because I spend most of my day on a computer screen that I struggle to see.  Everything just takes more effort.  Working a 5 day work week is horrible.  If I make it through 5 days I am so tired I just want to sleep.  I want to have a nap.  I try to nap but in a semi-open work environment that is hard.

I am hoping one day I will be able to cut my hours to part time.  But given my husbands obligations, that does not look possible, I am the main breadwinner….at least until child support ends.

Sigh.

But at least I am still alive. Some days that is all I can cling to.

I really wanted this blog to be a positive space, but it feels like all I am doing is venting. Maybe I need that.  I do not have a friend to vent to, one that can understand.  So here I am.

Trying to look forward to the positive, we are making progress in our long term goals.  One day I hope to be on the mission field in a volunteer capacity overseas part time. I also dream to drive our RV all across North America.  One day.

Ataxia

1. a·tax·i·a

   əˈtaksēə

   noun

   Medicine

   noun: ataxia; noun: ataxy

   1. the loss of full control of bodily movements.

   So I have Ataxia.  Specifically inherited Ataxia which can be referred to as Spinocerebellar Ataxia, Cerebellar Ataxia or SCA (number known or unknown).

   My symptoms started almost five years ago.  It started when I was talking walks, I would get a dizzy feeling, I tended to walk with my head looking down (typical of those with balance issues…..at the time I didn’t think I had any) and it progressed slowly.  I noticed that I could not get up from my desk without being dizzy, I was also dizzy and off balance when I tried to exercise or doing any sort of house work.  Anything that had me moving around quickly.

   My family Dr. had no idea what to tell me, she thought it could be blood pressure related, (my fingers swell up considerably when I am hot or it is hot outside….had to get my rings cut off once already, heat really drains my energy) or she thought it was maybe an allergy or inner ear thing.

   I spent the next three years going to specialists and ruling out one thing after another.  Finally she sent me to an older neurologist (and by old I mean he had medical devices in his office that looked like they walked out of the 1940’s….seriously I wondered if I was in an old mental hospital or museum).

    By that time, I was having some ongoing serious eye issues.  In addition to the dizziness, my eyes were doing strange things randomly.  I was seeing double….to the point I had to close one eye to see while working and driving.  I also had “moving” eyes, which seemed to move upwards on their own when I tried to focus on something.  Or they just plain moved….many times I could not focus.  This seemed to come and go but was worse during periods of stress (stress was a huge part of my life at that point and this didn’t help).

   Back then I just wanted answers. So as the neurologist was looking at my eyes…they started dancing.  He said yes…I see.  Something is not right.  REALLY??!!  I’ve been saying this for several years now.  He could not pin point what was causing this but he said he would send me to an ortho neurologist.  A neurologist that specializes in the eyes.  There are only like 2 of those in my general area.

   I went through my history of symptoms once again with the ortho neurologist and after disclosing to him that my biological mother also has had these symptoms for a few years…he said I am pretty sure I know what this is.  Ataxia.  Inherited Spinocerebellar Ataxia.

   FINALLY! I had a clinical diagnosis (there is not test apart from genetic testing for this, and at this present time there are only around 30 types of SCA whose genetic mutations have been identified. The regularly done genetic blood test can search for and identify 12 types.

   I went home and googled Spinocerebellar Ataxia right away!  This is what I found on Wikipedia.

   “Spinocerebellar ataxia (SCA) or also known as Spinocerebellar atrophy or Spinocerebellar degeneration, is a progressive, degenerative,^[1]genetic disease with multiple types, each of which could be considered a disease in its own right. An estimated 150,000 people in the United States are diagnosed with Spinocerebellar Ataxia. SCA’s are the largest group of this hereditary, progressive, degenerative and often fatal neurodegenerative disorder. There is no known effective treatment or cure. Spinocerebellar Ataxia can affect anyone of any age. The disease is caused by either a recessive or dominant gene. In many cases people are not aware that they carry the ataxia gene until they have children who begin to show signs of having the disorder.^[2]”

   Really?  This does not sounds good.

   Luckily in my case, the disease seems to be slow progression.  I have had a definite worsening in symptoms the past five years, and there is no guarantee as to what my prognosis long term is.  However given family history it seems that I may never need a wheelchair.  That being said, the disease is different in each case.  For example my bio mom has worse balance issues than I do, and my eyes are worse than hers in some ways.  Our symptoms are a bit different.

   So what do I do now?  Take one day at a time.  Take my time.  Slow down.  Try and stay away from stress (ya right) and try and educate others on this rare disorder.  My fatigue is getting worse, I have never felt such exhaustion from just trying to get through each day.

   As for symptoms here are the most usual ones (of which I have most)

   • impaired coordination in the trunk or arms and legs
   • frequent stumbling
   • unsteady gait
   • uncontrolled or repetitive eye movements
   • trouble eating and performing other fine-motor tasks
   • slurred speech
   • vocal changes in tone, volume, and pitch
   • headaches
   • behavioral or personality changes
   • dizziness
   • Fatigue is a common complaint, likely because the muscles of the body have to work harder to overcome the lack of coordination to perform their daily activities.

   So while that all seems overwhelming…I know that I can continue to have a productive life, no matter what happens.  I strive to be as independent for as long as possible.  Most likely moving towards a walker at some point and giving up my drivers license, but who knows….maybe the symptoms will start progressing slower once I really start doing more self care.  My job is a big part of the stress, usually while on vacation I have very few Ataxia symptoms, my eyes get better and my balance is not too bad.

   Today is a bad day.  My eyes have cooperated enough to finish this post…but my exhaustion is here and my balance is not.

   One day at a time.