M.S. Awareness Day and What I Don’t Really Want You to Know

 

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Today is Multiple Sclerosis Awareness Day. To be honest, a part of me does not want you to know everything  I experience. Some of you, my friends, have Relapsing Remitting M.S. and some may only have a few attacks in your lifetime. I am so thankful for those who have that experience.  Others of you deal with your own battles in the trenches, M.S. related or not.

I happen to be one in the 10 – 15% of M.S. patients that have Primary Progressive. So, in spite of being only thirty eight years old my body has been aggressively attacking itself for over eighteen years. I did not get a diagnosis until at least twelve years into the attacks. I can relate to feeling like an elderly individual more than I can to a woman in her thirties. Yeah, sure, it is hard to believe. You see my size 6 body, my appearance somewhat neat and orderly and my rather large smile. I love to smile and love to make eye contact. It is sure hard to believe something is wrong.

What you cannot see is the inner battle of the constant unknown. Seasons, and temperatures, stresses, sounds and lights, almost anything can change my ability to move, ability to think clearly and so much more.  I have been doing amazing since beginning the Immune Therapy. I have been able to drive, stand up for longer periods in the kitchen, clean a little more and I am more emotionally stable but nothing is normal. Touch and I have a love-hate relationship. I love to hug and show physical affection but to hold my hand for long or rub my arm or leg can cause pain, numbing, and spider crawlies up and down my whole body. It’s a load of nerve craziness. Sexual intimacy is wonderful and still a priority with my spouse but it is like a delicate dance. I am fragile and can easily be injured. It is wonderful and exhausting.

          I may be walking well when you first see me and as soon as the sun is shining on me, my body warmth increases or any other number of irritations or stresses come my way I may be fighting to lift my legs and I may show signs of instability.   You might not be able to tell  unless you can read me really well. On my harder days and seasons, it is all over my face and body.  Keeping my legs strong has helped me to keep moving but strong muscles cannot totally overcome a nervous system that won’t send messages. My arms are strong because I exercise but holding them up to clean a window can cause incredible discomfort.  Something so simple can wipe me out. I actually enjoy cleaning so this is not something I like to hand off to other people. 

Struggles with my bladder and bowels have been going on since I was a child. It has only gotten worse over the years.The immune therapy and some natural aids  have enabled me to have normal bowel movements. Without the medicine my system is sluggish and what should be normal for a woman who eats as clean as I do, is nothing like normal.

Sleep is a battlefield too. Falling asleep is difficult when spiders are crawling up my legs-at least that is what it feels like. I use Cedarwood oil to ease that and it works. I wake up from sleep feeling like someone is pushing different parts of my body down into the bed-it’s really just heaviness from the warmth of my body. Pain pierces parts of my body and wakes me up. While on the Immune Therapy sleep comes, pain disappears and I awake much more rested.

M.S. hug is not a friendly name. It is really a horrible feeling. It may be around the knee or leg for me but more often it feels like someone has tightly wrapped a bandage around my ribs  and pulls it tighter and tighter and then loosens it just long enough to make me think it is done. At odd times it constricts making me feel like I cannot breathe. It can stir panic and fear and I have to choose to breathe deep and think calming thoughts of truth.

Oh, there is much more but really, I don’t want you to know everything. I just want you to know enough to pray that my immune system no longer attacks itself (which I believe we have accomplished  with the Immune Therapy-I will share an update on that later). I want you to pray the inflammation settles in my body so I do not have to live on this medicine. Most patients only have to be on Infeperium for a short period.  And please do not assume you know how I am doing just because you see me walking, smiling and appearing normal.  Normal has been stolen away from me by the dysfunction of my own body. I don’t really want you to know that I am insecure and sometimes worried that people think I am lying or misleading. I am learning to not be so worried about what other people think. I cannot always be reliable because I just do not know what tomorrow holds for me but those who truly know me and truly love me know I am sincere. I cannot worry what others think.  I am choosing to live for God and God alone.

If you want to know more about M.S. feel free to read this article that the Mayo Clinic  created.  

Please pray for all M.S. patients. Being diagnosed with a supposedly incurable chronic illness is very scary. Pray they make healthy changes so they can thrive and possibly correct their immune dysfunction early. Pray for their minds to think on things that are good, true and lovely. Pray for healing in the body, mind and spirit.  Pray they know the eternal hope of Jesus Christ. We have eternity to live without pain and trials. This time on earth is minimal in light of eternity. M.S. is not a death sentence but it can definitely change the person who battles it for good, better or worse.

“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary , but what is unseen is eternal.” 2 Corinthians 4:16-18

Praying for you today,

Charise

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2 thoughts on “M.S. Awareness Day and What I Don’t Really Want You to Know”

  1. Cherise,
    Your blog inspires me to pray more specifically for you. Thanks for sharing. I had an aunt who passed away at about age 30 from MS, but more so from complications of an attempt at the Parkinson’s type brain surgery. She was in a coma for five years. We visited her every week when I was about 5 years old. Her beautiful brown doe eyes would follow me around the room. I never knew her to be able to walk…I guess I was too young. Anyway…I am so glad that you are getting some relief occasionally from this therapy. We love you a bunch.
    Paula

    Like

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