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 afterward, 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 backward?
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 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 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 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 in 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 for 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 advice I’ve received so often, ” Practice moderation in everything.” It’s good advice.
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. The 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
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
Being a young caregiver it is very hard to find balance. I try daily to have enough time for me, my husband, my god kids and take care of my Mom. I am often asking for just a few more hours in the day. I am always saying MS SUCKS! It really does, it sucks the life, and energy right out of everyone that deals with it on a daily basis. Everyday is a gift!
I couldn’t agree with you more and so often what’s left over after taking care of all that MUST be done, is only a few minutes of peace in the shower.