When an MSer plays normal

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Last Thursday night I went out for girls night for the first time in a very, very, very long time. My sister (Kelly) and her daughter (Dawn) invited me to dinner and paint night ~ I LOVE food and creativity and them,so I was thrilled. Now here’s the kicker ~ these plans started to be made about a month ago, with just the paint night 🙂
I thought “2 maybe 3 hours if I include travel time” and they were driving so even that took some pressure off, surly I could do this! I do that much when we have to go grocery shopping! Okay! So, I prepared, we had the date locked in – nothing for the day before or the day after, whew! Then it got closer, leg spasms started that Monday, I was like NO! Don’t mess up my outing!!! Several warm baths with tea tree and peppermint oils over the next two days and they eased, again, Whew! Then I learn my sweet niece wants us to make it a full girls night out and take us to one of her favourite restaurants for dinner too ~ very sweet and I love food (did I already say that? *giggle*
But also running through my mind was “Oh my that’s another 2 hours at least!” *panic!*breathe* “I can do this” started running through my head like a mantra/ locomotive.
The day before came, we had a few errands to take care of then rested the rest of the day. Ate a good healthy meal, lots of water and soaked in my warm tea tree peppermint oil bath, bedtime early, slept in later than usual, took my time getting ready ~ no, we can’t just jump up and get dressed, makeup etc anymore, this takes thought, even if its just casual! Time came, Kelly arrived and I was still feeling good! YAY!!! We visited at the house for a bit with our Mother, then headed out for our adventure, it was 4:30pm.
We had a blast, dinner was totally yummy, we caught up on the goings on in our lives and giggled and of course ate way too much and still had some to take home. Then off to our painting session, which was also so much fun! We arrived back home about 9-9:30pm, went inside to show off our “talents” to Mom/Grandma, none of us will be hanging in a museum anytime soon, but Mother being the good Mom she is has hung mine prominently in our home *blushes*

Sounds like all went well, right? Well it did! but here is the rest of that MS kicker…. Not only do we have to prepare a day or two in advance, then after we pretend to be somewhat normal, we have to pay for it……. Friday wasn’t too bad, higher fatigue, some muscle stiffness, mostly in arm muscles I haven’t used in I don’t know how long, lol
But now today, Saturday, first apparently the fatigue had gotten to me because I slept nearly 15 hours and still woke up tired! muscles are all screaming and spasming and I have the loveliest shades of bruising you have ever seen thanks to afore mentioned spasms.

So if you have a friend or loved one that has MS, or fibromyalgia, or lupus, or other such chronic painful illness. Don’t take it personally if we don’t accept every invitation, and please don’t stop inviting us, just keep in mind that when we accept we literally have to nearly block off  a couple of days before and after the event, even if it is only 4 or 6 hours…….. and sometimes we really need to do it, so please be patient, we want to hang out, we still want to do stuff other than doctor visits, its just harder now.

Much love and peaceful blessings to all,

Kristine Marie Naef

 

Today is a get up and do day! My Life with MS

Multiple Scle1457689897582rosis is filled with times of intense struggle followed by periods of calm. During the calm a new normal is found that consists of changing how everyday tasks are done and limiting those things that are not as important. Meds, vitamins, diet, exercise, and working to stay as stress free as possible helps to manage the symptoms and life goes on. Years pass by. Relapses happen. With each relapse a new normal is found and the process continues.

I wish I was one of those people. I wish I could say, like so many do, that I have had MS for 20 years and am still going strong or that it’s been 5 years since my diagnosis and my symptoms are still the same, (through various tests and past medical records my doctors feel I have probably had symptoms as far back as ten years but they were mild then} Until 2010 when my symptoms hit me like a bulldozer and I have never had a period of time when something wasn’t changing. MS has been fast progressing and aggressive for me. I know I’m part of a smaller population of MSers, but I think it’s important for the world to know that not all MS is the same.

Sure, I am encouraged by the stories of people with MS who advance in their careers, run marathons, and are seen on TV giving a face to MS. What bothers me are the numbers of people that think MS isn’t that bad, after all just look at so-and-so on TV or watch this video I saw of how someone drank a special mineral water and now lives symptom free.

We have done a fairly good job at informing the world that MS exists, but not so good at explaining that it can be cruel, painful, debilitating, and that a cure has not yet been found. Yes, I agree that not everyone will end up in a wheelchair unable to manage life on their own, but it happens and we have to be sure we are sharing both the good and the bad with the world so they know the truth and not just the positive, brave side we like to portrait. Being positive doesn’t mean denying how you feel and hiding those feelings from others. It’s acknowledging the ugliness of MS and choosing to push through anyway.

I never asked to get sick, to have to quit my job, to live day by day with struggles. That was never a part of my long term goals in life. I work hard every day to stay positive, encourage others and even encourage myself. But you know, some days I have to talk myself into getting out of bed. It’s true. I have even been known to argue with myself as I work up the strength to get a shower to start my day.

It’s hard. But even in the impossible, I see good things around me. I see people smiling because I said something funny. I see strangers extending a helping hand when I’m struggling to get the door open or needing help to get something from the top shelf. I see love in action and joy in some of the strangest moments.

No matter how difficult your day is, look up from your struggle and take a deep breath. What are some things in life that make you smile, that warm your heart, that bring you joy? Hang on to those things today. It won’t make the day easier but it will make the load lighter. MS is different for everyone, but pain is pain, struggle is struggle, change is change. Today is not a “give up” day…it’s a “get up” day.
Kristine Marie Naef

You Are Not A Broken Toy

Terrific blog!

Kelsey Horton

You are not a broken toy.

Your arm is not imprinted with the bite marks of a brother or friend or dog or frazzled mother.

You are not plastic.

You were not manufactured on a nameless assembly line.

You are not abandoned in a spider-haunted corner of a child’s closet, a casualty of the newest talking gadget.

You are not tattered, shredded, being held up to the light to see if you belong in the garbage.

You do not have batteries that whirl and grind in alarming noises.

There is nothing broken about you.

You do not need one more workshop, one more degree, one more drink, one more chance to prove yourself this time.

You do not need to hammer yourself into a mold.

You do not need to tone it down.

You do not need to act out the desires of your parents.

You do not need to…

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Just some thoughts…

Someone asked me “what makes me angry about the world?” Wow! So much to choose from.
First and foremost I guess would have to be the way people treat each other and other living things from their egos and hate rather than with compassion and understanding. So seldom do we humans go beyond the surface news, media or even our own bruised egos to even try to see from the others point of view. I hate injustice based on ignorance or even worse bigotry or any kind for that matter.
I get angry that we cannot trust our “journalists” to give unbiased reports of what is actually happening in the world, or even locally. I have to watch/listen to several different venues and even then I just try to find a thread of truth in the lot of it and then make up my own mind. I get just as angry that so many will take the “word” of some celebrity as gospel and go with that rationale simply because that person is popular or worse because they’re cute! We need to think for ourselves and ACT on that!
There is also upset that (in my opinion) hardly any of our so called “world leaders” have any integrity or courage to just simply do the right thing not just for the citizens of their own countries but of the world! Can it really be so hard to do? I do not think so and I also believe it would solve much of the worlds problems. Perhaps we should all ban together and bring into power Mothers and Grandmothers ~ we don’t give a shit about heroics rather we are far more concerned with our children’s safety and if anyone misbehaves ~ we’ll put their butts in a corner or if really bad to bed without dessert! Who would argue!?! No one wants Mother’s evil eye!!!
There is so much more, but that’ll wait for another time.
Peaceful blessings,
Kristine Marie165078_468424983215614_1323971663_n

Living Out Loud

Yesterday I wrote a bio-type blog ~ it was part of a writing challenge I have started to get me more comfortable with writing. It didn’t work! lol
I was about as uncomfortable as it can get due to recent events that have taken place in my life over several months. What I wrote was about a 4th grade level!
I have never been known for being insecure, or holding back rather quite the opposite. But the fear instilled in me over the last few months made me water (as in flood) it down, so here is a second bio ~
Hello everyone!
I am Kristine Marie Naef, owner/creator of Wow Words Of Wisdom with Kristine Marie, here on WordPress and on facebook. Many of you already know that I have MS, multiple sclerosis, also I have battled breast cancer and with these fun things came a serious bout with sever clinical depression( with an attempt, thoughts of suicide which caused a brief but very needed stay in hospital) these are situations that have happened in my life, but they really aren’t all there it to me, not hardly!
There is so much more~
I grew up in a most loving and encouraging home, mostly in California, yes I am a beach baby, with my Mother and two brothers and a sister ( I am the baby, which in its self should explain a lot! lol) We also spent about ten years in Arkansas to help with my Grandmother as she aged so she could remain on her beloved farm for as long as possible. My Mother always told us kids that we were brilliant, capable and could do anything we wanted to ~ I am so certain there were times as a teenager that she regretted ever having said that to me, as I took her at her word, just perhaps a bit earlier than she had ever meant, lol
But I survived it all, and so did she! 😉
When I came back to California in the early 80’s I met a wonderful man (at least I thought so!) and we settled into life and within a few years we had a son, the center of my heart ~ I left the man, but kept my son. He brought me more joy and terrified me more than anything I could have ever have imagined ~ just a complete joy to be around. He was (and is) bright, handsome,witty, intelligent and thoughtful, and much like his Mother, extremely opinionated! But I can honestly say that nothing else I have ever done has, or will, ever be as important as raising him. Yes, I am proud, even though we have had some very hard/painful times in there too ~ I have always loved him and always will.
During the years I was raising him, I also opened my own construction clean-up and property maintenance company, which ran quite successfully for nearly 14 years, until the MS began to show its self more intensely.
That brings us here to how Wow got started ~ I wanted to give others a place to feel safe to open up about their own stuff going on in their lives, a place to share ideas, cultures, different beliefs, everything. A place where even if we disagreed there would be respect, compassion and understanding. I think I, with all of your help, have created just such a space.
I thank you all so much for being here with, for our holding each other’s hands as we continue on our life journeys, together
Peace and loves best to all
Sincerely
Kristine Marie

Who I am

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If you have been a friend of Wow for even a year, then you already know that my name is Kristine Marie Naef, and that I have multiple sclerosis and have battled breast cancer, and that I have most recently been battling severe depression ~
But those things are NOT who I am, they are challenges I have.
Who I am, is a woman that turned fifty this past August and is still learning, growing, screwing up, discovering new things about myself and the world around me.

This thing we call life isn’t always easy, or even pretty.
But it is always exciting, fascinating and most importantly it IS worthwhile! I am worthwhile! Even with all my blunders, mis-steps, failures and mistakes, I am still worthwhile and my life matters!
No, I probably won’t ever change the world (although I’d sure like to!) I may not ever be world-known, I’m okay with that.
But what I can do is try to bring some comfort to others, simply by being there to listen, help where I can (if they want it) and continue to learn and grow ~ in love, compassion and in my truth.
For my grandson, I am the best thing since sliced bread~ for me, he is my heart and easiest way to get me to smile. For my Mother, I am her confidante, loyal daughter and friend ~ for me, she is my hero, my teacher, my confidante and my very best friend.
I wish I knew all the answers, but I don’t. However, I do know this ~ We are all going through something and its a little easier when we know someone cares, someone sees us, acknowledges us.
I do care, you do matter and I am so grateful to be able to reach out to you, each one!
Peaceful blessings,
Kristine Marie

How To Use Fear As Fuel

Terrific idea! 😊

Wild Tribe

Hello World! How many of us have wanted to do something, but fear stopped us? How many times have you been nervous with butterflies, but didn’t know how to calm them down? Fear used to stop me from doing so many things. Not Anymore! I learned how to use fear and nervous butterflies to help me manifest the things I want in my life.

How to manifest while having those nervous butterflies? Last year my fiance took me ice skating for the first time in my life. I am not a fan of ice. The thought of ice skating terrified me. Blades on your feet and ice seem like a bad idea; I tried anyways. When I got to the ice rink, there were no handles or railings, just some snow piles in certain areas. I just stood there in the snow, watching my fiance smiling and having fun on…

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