Oh yeah, the big P word.
I have to admit it can be my kryptonite so I know what I am talking about here.
The very worst thing you can do – whether it is MS related, life related, and love related is to stop.
Life happens to us, or with us. MS is going to be there regardless of what we do, or don’t do, and it is easy to throw our arms up and just say it’s too hard now.
I went through a spell not long ago, when the weather where I am, was over 110 F/42C and I literally couldn’t go outside. The pain was intolerable, the fatigue was horrible. I was losing eyesight, and patience, and I am not going to tell you that I just breezed right through it. It is very depressing to have to be a prisoner to an AC unit…but that is how I was living. So yes, I felt like, “this is too much, I can’t take it” I will just sleep my life away.
And guess what? I DID!!!
Ooh ooh that isn’t supposed to be the moral of this story!
The point was, that I was actually missing out on so much during that time and I am sure there were things I could have done. I could have painted, or written or crafted. I could have read inspiring books. But I didn’t.
There is nothing wrong with vegging out in front of the TV from time to time…we all need that. I think people with chronic illness sometimes have to have it when the pain is insurmountable. But if it become our life, then I think we are heading down a dangerous road.
I had a friend who committed suicide because of the pain of MS. She felt like she couldn’t go on. I understand. But the world, and her friends and family, lost a beautiful soul with much to give, because she gave up.
So how do we combat this little problem?
I am so serious about the word I had it tattooed in white ink on my wrist so I could see it everyday.
We keep going and we find something useful that lights us up and gives us strength to move forward.
What do you love?
Is it cooking, writing, listening to music?
What could you do with that?
What gifts do you have to give the world?
Oh you think you don’t have any? Trust me we all have them.
Even if you have no arms or legs that work – Can you speak? Can you tell stories? Can you sing?
There is never, ever, a reason to give up completely.
The irony is that the treasure lies just beyond the point of giving up. Right at the place where you feel all is lost, you only have to cross the bridge and find your pot of gold.
Haven’t you watched enough movies to know that?
Nobody got anywhere by saying, I CAN’T or I WON’T !
Drop those words from your vocabulary because I guarantee you, they are not doing you any good.
And while you are dropping, you can erase…………….
at the same time.
If you ever find yourself dealing with the dreaded B word, remember this:
That is why you came to earth with an…
Turn off the TV – and IMAGINE. You might be surprised at how fast you have created something to do that you truly enjoy.
Perseverance is the key to achieving every goal and reaching every dream. Whether you have Multiple Sclerosis or Fibromyalgia, Lupus, or the flu, there is no reason for you to let life just fly by you as if you were it’s passenger – scoot on over and get in the driver’s seat.
Hey I rhymed! Have a good one!
Want to know what a good day feels like when you have MS?
You spend days dragging yourself out of bed, and if you are unfortunate enough to have a 9-to-5 job, that means that most mornings you struggle to shower (or not), dress, do the other necessities, and finally get out the door.
Of course by the time you get out that door you have pretty much spent all the energy reserved for that day, so the rest of the morning and afternoon you are running on afterburn.
But, then one day, who knows why, who knows when, you wake up and Bingo Bango, you have mega-energy! You not only feel good, you feel SUPERHUMAN!
What happens next?
You jump out of bed run to the car, (do stop to get dressed first!) go everywhere you can possibly go, and you just keep moving like that little Energizer Bunny.
Until, you fall flat on your face.
There you are living the fast and furious life – all in one good day, because you know as well as I do, that good day may not come around for a long, long time, and who can blame you for wanting to make the most of it?
Now if you have a family anything like mine, you will hear cries of. “Take it easy, you’ll make yourself sick!” ‘You know you have to PACE YOURSELF!”
Phooey I say —-When I feel good, I have to take advantage of the moment…Carpe Diem! Live for the moment! Move fast and then faster.
Actually, I would love to learn to pace myself but that would require more good days and less rotten ones. But until that happens I have to move when I can move, it makes me feel normal. It makes me have hope. It makes me remember what it was like before MS took over and forced me to slow way, way, down.
So when a good day comes round…watch out everyone! I will be spinning like the white tornado and nobody can tell me not to feel on top of the world! Because, to me, normal is just FABULOUS!
Earlier this morning my sister reminded me of something that I sometimes forget about being way over here, half around the world from the USA – today is America’s Independence Day. The 4th of July.
But to make it even more personal my sister decided that it was her Independence Day too…The what, wherefores, and whys of her personal declaration I will leave to her, but it got me thinking.
I need to make a Declaration of Independence also. I need to really jump into life, despite my recent MS flare and the activity of all the paresthesia that surrounded it, I need to declare my purpose NOW and realize that even though life is never going to go back to where it once was, it can certainly go forward and be fulfilling.
So here it is – My Declaration of Independence.
I will go forth with the knowledge that I have a purpose to fulfill on this Earth. That I am gifted with all the unique talent and ability that I need in order to complete my Earthly mission. That I am unstoppable in my resolve, not by health or any perceived lack, and that my contributions to my family, students, and community will be complete and satisfying.
I declare that I accept that I must fight for a cure for Multiple Sclerosis and that I will work actively to be a part of the positive voices who contribute to this cause. I will, in my own unique way become a face of MS who is not afraid to move, dance, crawl, scoot or fly forward.
It is my dream to be able to show others who face this disease that even through pain, and less ability, and sometimes massive inconvenience that we can still have happy, rewarding, active, daring, adventurous and truly luscious lives!
To me the exciting part about declaring my independence from limitation…is that it gives me freedom, and because of that I am DREAMING BIG!
I have a SECRET plan, that only one person in the world right now knows about…it is HUGE and it will be loud..and as they say over here in the Middle East, inshallah..(God willing) it will be manifested. While I work on that, in the background, there are other things cooking that are soon to appear.
Everyone latches on to that saying, I HAVE ME BUT IT DOESN’T HAVE ME and it is a good, catchy slogan…but I like to think I have MS and I have it by the throat! I need that go get’um non-stop hup two three four forward march feeling, to at times, even propel myself out of bed. But here is the truth of it. No matter how hard it might be to get around or what paraphenalia I have to take with me…cane, medicine, needles, etc. It is worth every minute of being out there in the world (hint about my HUGE project!!!)
I am not shy about my MS. I know a lot of people who don’t want to tell others about their condition. And if it is work related then I understand that, but I have run across other MSers who somehow feel ashamed to say they have a chronic illness. When I need my cane, and that isn’t all the time, I use that opportunity to tell people why I have it. Of course I am one of those people who gets into conversations with random folks at the grocery or the bus stop, but one person at a time gets to see a new face of MS.
And on the days when I look like everybody else, I still let students, and others who I interact with for a long period of time, know what I am dealing with. They might see a wobble in my walk, or a slur in my speech…They could notice the word that gets stuck in my head and the hands that tremble. It doesn’t happen everyday, but when it does, I think its is better to just tell folks what it is.
And by the way, when I do say I have MS, I am always blown away by the number of people who are related to someone who has it. But that my friends, is a subject for another day, isn’t it?