Life's Precious Balance

As winter progressed to spring this year, Lynn was finally beginning to feel less fatigue, his muscles were getting stronger, his reactions to the Rebif injections were becoming less and less and it seemed that he was finally over the hump of recovering from his hospitalization in 2010, the anemia afterwards, and then the adjustment to the Rebif.  He was feeling good.
We set a goal of returning to church the first Sunday in April and were really getting excited about our plan to re-enter the fellowship of our church family. He started trying to get acclimated to his manual wheelchair so he would be able to tolerate sitting in it for up to two hours (our church elevator is old and cannot accommodate his powerchair so he would have to use a manual chair for the service and the 30-minute trip there and back).
That first weekend in April rolled around and he just wasn’t feeling himself.  We waited till the last minute but finally had to say, “no,” to our plans to go to church that Sunday.  We figured maybe it was the pollen build up because that always affected him.  Then the next few weekends after that, we had Daniel and Katie’s wedding so those activities were tiring him out, we said.  Each week we tried to figure out what was going on?  He said he was feeling like he felt when he first started Rebif.  Why was he going backwards?
I think this week we might have an answer.  Lynn asked his doctor to order some lab work on the recommendation of his dietician to find out why he could not lose weight.  He had been steadily losing about 1/2 to 1 lb. a week since he started trying to lose weight in January but around March/April he hit a plateau and no more was coming off.  Since Rebif can affect blood cell production and liver/thyroid function, we also asked for those values to be checked.  The blood work results came back this week and his thyroid TSH is up.  There’s our answer!  The Rebif has reduced his thyroid function so that he has developed a leaning toward hypothyroidism.
If you’re not familiar with hypothyroidism, symptoms include, among other things, fatigue, weight gain, and feeling cold.  All symptoms that Lynn has been experiencing and which have been getting progressively worse over the last several weeks.  Fortunately, the “fix” is an increase in his thyroid medicine so we know he will get better but often it takes several weeks to notice an improvement.  There goes most of the summer….  Hopefully he will be back to normal or at least less miserable when we go on vacation at the end of August.
When we figured out what was going on, what struck me is how tenuous  our health and, by association, our happiness is.  The thyroid gland is not very big but it carries a significant role in the health of the body.  A little too much or not enough hormone being released and it makes you feel like you’ve been run over by a tank, scrapped up, and then fed through a shredder.   That’s true though for so much of what makes our bodies work.
Have you noticed that if you get a paper cut on your finger or a blister on your toe how you are aware of that pain in your subconscious all the time?  Something so minor will make you favor that appendage.  By favoring that body part, it puts a strain on other body parts which in turn start complaining.  If their complaints are ignored too long then they malfunction in some way making them the center of attention and resulting on other areas adding their voices to the mayhem. Let one little area get off track and the precarious balance we count on for health and happiness comes tumbling down.
That’s not only true for health but also everything else in life.  Too little sleep, too much food, not enough water, too many activities….  Too much or too little of anything and our world tilts.  Reminds me of the advise I’ve received so often, ” Practice moderation in everything.”  It’s good advise.
As a caregiver finding balance is very difficult.  Maintaining balance seems almost impossible.  Just when I think I’ve got it all under control, something changes.  I get a new project with a short deadline at work.  Lynn’s health gets worse and he needs more attention.  One of my kids has a problem or is reaching a milestone in their lives that I want to share. I know that’s true for everyone but for caregivers I think it’s even more difficult to manage.
So much of our lives are not under our control.  We manipulate events to handle them the best that we can, but I don’t think we have much control.  I’ve found, in fact, that the more I try to control, the more depressed or overwhelmed I get.  When I’m smart, I recognize that fact and turn it over to God to manage.  When I don’t turn it over right away, then I just suffer longer and finally have to go there anyway.
Being a caregiver has convinced me more than almost anything else that I’m a created being and that my world was likewise created.  The very fact that imbalances wreak havoc tells me that something with intelligence had to have put this all together. I’ve looked at mud puddles and they aren’t very smart.  They just sit there and let things fall into them or they dry up and go away with the sun’s heat. Therefore, I cannot believe a glob of goo millions of years ago suddenly came together to create any of the things I see before me today.  Same goes for a big bang…I’ve seen fireworks and all that comes from them are sparks and maybe a fire if they’re too close to trash.  It takes a whole lot more faith to believe in either of those theories than it does to believe that a rational, intelligent being created man and this earth.
Enough on that soapbox…it’s just that I realize how complex life is when I see how a small wound, a change in lab values, or too little rest can throw us off-balance.  It makes me appreciate having a routine and the common sense to realize that having “enough” is enough.
I wish you enough sun to keep your attitude  bright.
I wish you enough rain to appreciate the sun  more.
I wish you enough happiness to keep your spirit  alive.
I wish you enough pain so that the smallest joys  in life appear much bigger.
I wish you enough gain to satisfy your  wanting.
I wish you enough loss to appreciate all that  you possess.
I wish you enough “Hello’s” to get you  through the final “Goodbye.”
– – – written by Bob Perks, P.O. Box 1702,  Shavertown, PA 18708-1702, USA

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There Go the Apples!

The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “don’t tip over the apple cart.”  When I hear that analogy, I have a vision of a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards?  Not sure which but I do know that it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day.  There needs to be a balance of sleep versus awake time; my work and his routine; his needs and my available time.  There also has to be an emotional balance.  We can cope with the routine aches, pains, fatigue, and malaise but throw in more pain, fatigue, frustration, or sleep deprivation than usual then the balance is gone and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair.  We’ve known for some time now that the motor was sounding as if it was going to go out at any time.  When we checked with our “chair repair man” however, we found out that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s essential, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version.  It has three speeds, the legs elevate, and the chair tilts, among other things.  He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions.  When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. These are just two of the maneuvers he does with it all day but there are many more.  Suddenly on Wednesday, he goes to tilt back to adjust his position and there is no response!  Fortunately, he was not tilted back like he was being launched into space; he was on the ground; but the impact of losing “tilt” was enormous for his quality of life. 
Since he could no longer tilt, he could no longer help me in shifting his position himself so I had to lift him more; therefore, my back is more sore.  He could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer when he worked. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it keep him from being able to shift his weight as he sat for hours.  By not being able to shift slightly ever so many hours, he experienced “butt fatigue” so he could not get comfortable.  His buttock skin stayed compressed longer so it is redder and he now has a couple of top layer skin tears.  There was even more impact than this but that’s enough for now. Let me just say that it was traumatic….for us both.
In our house, “if Lynn ain’t happy, nobody’s happy.”  When he’s uncomfortable, he looks to me to find a way to make him comfortable which means constant interruptions.  At times he gets angry and frustrated but that blows over.  What is worse is the sadness and worry in his eyes.  He wonders how long he will have to suffer and what the impact will be…because when the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time.  I cheered with joy today when the doorbell rang and it was the repair man with a new motor. We were both very grateful for his ability and house call.  The chair is now fixed; Lynn is comfortable again; and I should be able to get his poor butt back to health without too much trouble.
So once again, balance is restored.  We both prayed for God to help us during those hours of waiting for the repair man…and he did.  We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked, or made light of the problem.  Using humor, seems to lighten the load so we try that out when we can.  Sometimes it works and sometimes it falls short, but most of the time we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart.  Try to keep a balance.  When the focus shifts to the front, then try to lighten the back and get back the balance.  It helps to make the waiting time go much faster.

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Sometimes I Feel Like I will Explode

Pressure.   So much pressure.  …but where does it come from?  Me or “them?”
This has been one of those weeks where I have felt I was under extreme pressure all week.  The week started off with me getting up early on Monday for a conference call that wasn’t actually scheduled till Tuesday.  I needed to get up early anyway in order to have the four hours I need to get ready before I go into work for meetings so it was actually somewhat of a relief to have gotten the date wrong but that meant also getting up early the next day…which I did.  “Issues” started flowing in from work Tuesday afternoon and I haven’t had a break since….
My job can be very intensive.  I coordinate investigations, consult on workplace conflicts, and generally give advise on how to address problems.  Often participants are very emotional and the consultations are intense.  I have to be “on my game,” able to listen for variations of the truth, able to see through smoke screens to the facts, able to determine what laws apply and what solutions might work in a situation based on personalities and behaviors that I rely on others to describe.  Therefore, I need to concentrate on what is being said, how it’s being said, and what is not said to make sure I manage a situation effectively.
Now imagine this…I’m on a speaker phone attending a conference call about some highly emotional issue.  I’m multitasking at my desk, looking up information, referencing reports, taking notes, and planning strategies with the people on the line.  Over the baby monitor on my desk, I hear, “Donna I need to be cathed.”  So I take the speaker phone with me, mute the line, glove up and take care of business, never missing a beat.  Then he mouths, “I need nose spray,”  so I apply the spray, then as I put down the spray, “can you make me some tea?” I continue to carry on my conversation and go make the tea. When I deliver it, his foot has come loose from the stirrups in the peddler so I fix that, his socks need to be pulled up and his shin needs scratching.  I finish all this, still on the phone and go back to my desk.  Fifteen minutes later, “Sweetie, can you come here?” and it starts again.
Some days I do okay with this pace; other days I don’t.  When the issues are intense or the stakes are high, I feel intense internal conflict between who gets my attention at that moment. So far, I’ve managed to juggle it all– I can multitask like you wouldn’t believe, but the pressure is getting to me. Several times this week, I’ve just felt like I could not keep going like this.  I would love to quite the dual role.  I would love to go back to work and have someone else be the caregiver for a while but I can’t afford to do that.  The cost would just be too much so I keep going. I admit there are times I almost wish I would get injured or sick so I would have an excuse to stop for a while.  If that would happen, then insurance would pay for a temporary caregiver at least and the decision to stop being a caregiver, even temporarily, wouldn’t be mine to make.
I am very fearful that eventually I won’t be able to keep up the pace.  What will happen then?  We have a little savings but that would not last long if full-time care was needed.  If we lost most of our resources, then we would be eligible for assistance but I don’t want to lose nearly everything so I can get some help.  If I quite my job and worked part-time, we could not pay our bills.  Lynn could go into a care facility but I couldn’t (not that I ever want him to have to do that) but if that happens, what happens to me, the caregiver, who has burned out, lost their income, lost their home, lost their savings? 
I’m getting morbid and over-dramatic but it’s these type of thoughts that cause the pressure.  I don’t want my worst fears to happen. I don’t want to lose our home or to have to put Lynn in a care facility; nor do I want to lose my job (believe it or not, I really like what I do).  So I feel pressured…pressured to do my best at work so I don’t let down my colleagues; pressure to do my best for Lynn because I love him and am committed to him; pressure to try to be a supportive mother and friend; pressure to make it all work.  Where does this pressure come from?  From me. From my own expectations.  From my own demands to do it all perfectly.
So maybe what I need to do is go find a pin…I think its time to create a small leak.  Just a little leak to reduce some of the pressure; not so much as to make me explode or deflate entirely… just enough to stay afloat like a balloon that has lost its elasticity and becomes almost puncture proof.  That’s my goal. To become a low pressure, rubbery balloon. Sounds good doesn’t it? Or better yet, I guess I just need to turn it over to God and let him handle it because it’s just too much for me right now.  So….God, this is Donna.  Here… it’s yours.  Thanks and Amen.

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