I was feeling a litte creative today. While viewing the great MSAA website and looking at thier list of MS symptoms... this prayer/poem/wish came to me and I wanted to share.
What amazing people you all are. Every day we face one or more of the many symptoms that come with MS. Yet WE NEVER GIVE IN, WE ADAPT to our situations. I truly Pray everyday for a cure for all of my SecureACure4MS family and everyone affected by MS in the world.
for a lot of people these words trigger fear, anger, depression.
what did I do wrong?
I went through this same reaction, I am a religous person and started to question my beliefs... My Best friend (and founder of secureacure4ms) told me, Heather, this is very natural.Your life is changing, and you will learn to accept it. If your think about it... you are griving your old self...sooon you will accept your new normal. Once you accept it, you can start living your life again. AND SHE IS RIGHT!!!!
I thought I would share with you the Grieving process - Is this what you went through or are going through? Have you completed all of the steps? If you havent reached #5, its important that you get there so that you can start living your life to its fullest. If you havent gotten there yet and are having a hard time reaching that step, please talk to Sharon and I and we will try to help you reach that stage either by talking to you or referring you to our well respected resources.
Here are the 5 stages of grief and how I personally handled each stage - 1. SHOCK and DENIAL
I have been diagnosed with what?
no that cant be right, no one in my family has MS
my doctor is wrong, i am just tired, clumbsy..etc
I may lose my ability to walk?
What do you mean no CURE?
I am too young to have an incurable debilitating disease
I may have to quit working in near future because of this disease? this disease is going to get me fired as its already screwed things up. 2. PAIN and FEELING OF GUILT
I brought this upon myself as I was mean to my brothers growing up.
I didnt care about anyone but myself. I didnt help enough people. I am being punished.
If I had gone to the doctor more. If I had not eaten that cupcake and lost weight. If I had only exercised more. I am too quick to judge and label people.
3. ANGER/BARGAINING
What i have done in my life cant be that bad?
What did I do that was sooo horrible?
I never committed a crime, went to jail..there are murderers on the streets who are fine...why am I being punished? ---------------------------------------------------------------------------
I promise to be a better person. I promise to put my friends and family first if you take this away I promise I promise I promise..
4. DEPRESSION, FEELING OF LONELINESS
Everyone is leaving me. no one understands.
They tell me "I look good" but dont really understand what is going on inside,
There is no one for me to talk to.
My priorities in life have been all wrong and now its too late
I cant do anything anymore because I have MS
I have placed work before what is truly important in my life.
OMG I cant tell people at work
Money doesnt bring me happiness...just material things that i dont really need. 5. ACCEPTANCE of DISEASE (my best friend Sharon got me to this stage - thank you Sharon)
I am done living in my lonliness. I am done being Angry. I am done feeling Guilty. I am done with all the negativity. DONE DONE DONE.
I am NOT to blame for this
I am STILL me.
MS does not define me as a person.
I can take charge of my life and be the ME I am meant to be.
I am not going to limit my life anylonger
I am meant to advocate for MS - hence Sharon and I started SecureACure4MS
I am Hopeful and Believe that a cure is out there,
A-Attitude - have a positive attitude D- Determination A- Aspiring - want for a cure P- Perseverance - be a warrior
T- Thankful - for all the research, discoveries and new treatment options available to us. Thankful for our amazing families and friends
When I accepted that I am not MS Heather and looked at myself as Heather who has MS... my world changed. It will for you too. MS doesnt define you, it just explains a few things. Before I say, I CAN'T DO THAT... I look at the situation and Try...maybe I cannot do it the same way as before, but I can probably still do it, just have to find a different way to go about it.
example.. after my diagnosis, I went on a trip to Niagara Falls. I love that place, its very beautiful. It was a very HOT day. Normally I would just carry a bottle of water and be ok. But I learned that I need to watch my body temperature. So any opportunity I had to go inside of a store of gift shop allow the walk of the falls, I did. I made sure I always had ICE Cold water on hand. This allowed me to keep my core body temperature low so that I could enjoy the glorious beauty of the falls. I could have easily said I cannot go out because it was too hot. Instead I tried some different things first. It worked for ME.
The other thing on my trip is there are many observation points on the walk where you climb some stairs to reach these areas. These are great places to take pictures and just observe its beauty. With all the walking and the heat I was having trouble climbing the steps to these observation points. What I found were wheelchair ramps and utitlized them...it allowed me to walk up the points and not burn excess energy.
NEVER GIVE IN - ADAPT
Dont forget to enjoy your life and be present in your life. When you are truly living life, the ride is so much more FUN!!!
I hope the only thing people are facing is the Tryptophan coma from all of their leftover Turkey. Thanksgiving is a time to give Thanks for all the blessings in our life - not material things but gratitude's that have blessed our lives. This year has had its highs and lows for many of us. But one thing stays forever, our SecureACure4MS family. Family is forever. Sharon and I are blessed and truly thankful to have you all as part of our family.
Black Friday - for many this is a Tradition. Retail establishments for one day (it used to be one day) put merchandise at a deep discount. Many offer great door buster sales to the first shoppers that come through their doors. For many stores the offers are sooo great that people camp out in front of the store to ensure they are first in line. Here in Florida we had some camping out a full week in advance. Have we gone too far? I am not going to dis those that choose to shop as I hear from many that with all the discounts they were able to complete most if not all of their holiday shopping. Prior to my MS diagnosis I could keep up. But now I have issues starting with the parking lot, and the crowds of people pushing and shoving. I like to take my time and shop, not have to worry that someone is going to snatch up an item under my nose. WHAT ARE YOUR THOUGHTS?
BLACK FRIDAY OR NO BLACK FRIDAY?
I spent my Black Friday decorating the house. I woke up that morning. Had my coffee and a bagel. My grandmother was coming over around noon to help me decorate. I could not wait that long. By 830 am I became SUPER WOMAN
Stockings are hung by Fireplace. I decorated mantles, the ficus tree, coffee tables, dining room. Hung wreaths, swapped out towels and rugs. I was like a Mad Woman on Friday. I was blessed to have my grandmother come over around 1pm and she was like, "you have Most of it up, there isn't much for me to do". She brought her old village set and set it up on one of the cabinets in the dining room and helped me decorated the tree with ornaments.
My parents and brother will be in for Christmas and I want it to look nice. The whole family is coming to the house on Christmas day for dinner (except my baby brother and his family). I want the house to look extra special for my mom since she isn't here to decorate it herself. (she will be in 2 days before Christmas)
I have to say the house looks great.. Between my grandmother and I we accomplished a lot.
BUT,,,,it seems with all good things there comes a BUT
And I knew it but put my "BUT" aside to ensure I created a festive environment for everyone who comes to the house. I took full advantage of the "energy" burst I was feeling and boy am I paying for it. I am super tired and my legs are tight and in pain...
WHY DO WE OVERDO IT WHEN WE FEEL GOOD?
I KNOW the price I will pay for it... so why do I do it?
This is my favorite time of year. Being a transplant from Ohio its VERY hard to get in the Christmas spirit in Florida. There is no snow and most days we are outside in shorts and t-shirts. We in Florida, well at least me, dream of a White Christmas - I love going up north for Christmas. I think EVERYONE in the US should have snow on Christmas Day (then it can go away). I love the music, in fact that is all I listen to until day after Christmas. I love the Hallmark Christmas movies, old classics like Frosty the Snowman and Rudolph. And the classic Christmas Vacation. I just love Aunt Bethany and watched this movie 3 times already this weekend.
I love the lights, the decor. The change in spirit, during the holidays warms the heart. People seem to be more giving, more tolerant, more patient (except when trying to find a parking spot at the Mall)
It's amazing what we as MS'ers do and sacrifice for the love of our family and friends. But we have to take care of ourselves. If we don't take care of ourselves we won't be able to take care of our loved ones or may have to miss out on opportunities because of increase fatigue, pain, or more severe, a relapse.
Ask for help - allow for help - conserve your energy - remember what you use EXTRA one day may take away from what you have the next day.
As much as you may really love decorating. Let people help you put up a tree, string lights, put out decorations, bake holiday treats. All of this takes more energy than I realized.
I really like theSpoon Theory. Its symbolic of what we deal with.
My Christmas wish to you all (I know its early) but my wish is for ALL of us to have a Pain free, Symptom Free, Relapse Free Holiday.
