MG & Sex : The Odd Couple

Dear readers, probably you’ve figured out what I’m going to be sharing with you.

Being honest and straightforward about it,  sex is a topic hard to breach because many of us (myself included) are hesitant to open ourselves to others because it makes us vulnerable.

Sex and Myasthenia are truly the odd couple.  One is vibrant and passionate and the other struggles with weakness and everything that comes with it.

blurred silhouette hand.
blurred silhouette hand.

I’ve been married for thirty years to the same guy.  I married the love of my life, my friend, and my high school sweetheart, however that doesn’t mean that we don’t face the same troubles all couples face when dealing with a chronic illness.

I’m not going to talk about the whats, whens, or hows of the sex situation, but about how I feel about having sex with a chronic illness.  Specially if you’re like me who turned forty  and began  feeling sick as a dog and bingo, a neurologist told me that I had MG.  The saddest part for me was that for most of my life I had been a healthy, vibrant and strong woman, so the last ten years have been a challenge.

Coming to terms with the new me wasn’t easy.

All of a sudden, the man I had chose to spend my days and nights became instead of my friend and lover, my caregiver.  He helped me with all the basics, and keeping our love life as it used to be was out of the question.

It was time to reinvent ourselves as individuals and also as a couple.

At the early onset he would worry to a point where it wasn’t even worth the effort, because his fear of  how I was going to do the next day was terrible.  He would remorse constantly over everything and  if for some reason I would become weak, he would blame our lovemaking for it. That became our passion killer at least for some time.

Things changed after overcoming a couple of scary situations I’ve lived through , and nowadays it’s all about the moment. I cherish the days I’m strong enough and we make the best of it. He no longer worries so much and appreciates each day as a gift.

But most importantly I never gave up on that side of our relationship because he was ready to shift his role and I knew that if we went there things would never be the same.

Dealing with a chronic illness is and has always been hard on me and I didn’t want to miss on the beauty of sharing those moments with him, plus I thought it wasn’t fair for neither of us.

What worked for us was just talking and keeping our thoughts and wants in the open.  There is no other way, I feel blessed that this amazing man is part of my life and hope that you too have a special person to share a moment that makes you feel strong and alive.

So, my dear friends reaching that point where wellness surrounds us is tough, but we need to remember that our bodies our weak, but our will is strong.  And that is precisely what keeps us moving forward. Why would we miss out on anything life has to offer?

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul

 

MG & Weight Loss: An ongoing issue

Dear readers as you know we deal with a lot of mobility issues. I’m not going to get into the reasons of why this happens because basically all of us know that when weakness strikes we need to get some rest and that can go on for days and even weeks.

Which takes us to our next point, weight gain.

MG and weight loss.jpg

We struggle with our weight.  If we gain those extra dreaded pounds it’s going to be tough to move around and this makes us go in circles for what seems a very long time.

 

I had gotten to a decent point after May last year, and my weight was down to 148, which for me was great. Then, after my last flare and hospital stay in December it went all the way up to 175.

Gee, was I frustrated.

My family told me,

“Don’t STRESS yourself, things will work out.”

“You’ll see in no time you are going to loose that extra weight.”

I thought to myself,  “Yeap, those 28 extra pounds are going to just melt away as I do my high energy power exercises!!!!!”

If they wanted to make me feel better they did it, but the high only lasted a couple of minutes. Nobody was talking about how I was going to get there.

To make my loooooong story, very short.  I began my depending on how I wake up in the morning weight loss program.  I simply started to count my calories and since all of us know exercise is almost out of the question some days.  The days I get up feeling strong I exercise around the house doing household chores and eat very carefully.

Yesterday I weighed myself after a week, and discovered that I had only shed 2.2 pounds. I was disappointed because I thought that I had lost more.  Which lead me to a war with half of dozen cupcakes I had bought for “Ian” at the supermarket.

All of a sudden I craved sweets and totally forgot about the low-fat yogurt I was supposed to eat.

After an afternoon on an emotional merry go round ride I finally curled  up in bed and read that shedding 2.2 pounds was more than good in a week.

Which made me feel good about myself, which took me back to the cupcake I had eaten earlier.  The good news is that I had eaten only one out of six, the rest are still safe in my refrigerator.  Ian will probably have some this afternoon when he gets back from school and the rest will be given away.

My archenemy strawberry frosted vanilla cupcake had won the first battle, but I won the following when I chose not to eat the rest of them.

So, my dear friends reaching that point where wellness surrounds us is tough, but we need to remember that our bodies our weak, but our will is strong.  And that is precisely what keeps us moving forward.

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul

 

 

 

 

 

It’s Easier Said Than Done

Sorry, but it’s taken me a bit more effort than I thought it would.

For starters, if I’m writing about staying fit despite my Myasthenia than I better be able to do the work.

yoga 1 _ Article about yoga
via morguefile

I’m working on an article about yoga, not only to let others know, but to put in the work and do what needs to be done.  It’s not that we are always  going to ask others to cut some slack on us  because we live with a chronic illness.

We need to put in our best effort if we are trying something new, like in this instance yoga, to know if we can benefit from it on  a short and/or  long term.  I think changes are meant to be done on a long term  because that way we don’t get discouraged if we don’t see immediate results.

For starters, my first “AH!!!!” came rushing into the picture  when I read that Pranayama (breath control)  yoga was good for us.  My first thought was,

“I have trouble breathing sometimes as it is, I don’t need to add stress in that department.”

Which made me  scratch it off  my short list without even giving  it a second glance.

But, since it continues to show up each time I look into Kundalini yoga,  I am going to give it a shot.

Nevertheless my writing about all these  hard to pronounce yoga types, I haven’t finished getting all my information together.  Not for the sake of writing an article, but to put into practice the concept and actually giving it a chance and letting my readers know how it went for me.  So, others can try to it to.

For now what I’m working on is my posture, staying as straight as possible and giving my diaphragm a much needed break.

You can say it’s a getting ready thing.

So my readers, don’t forget that each day we get to live is one that we own.  Never let others push your voice down (even if they love you tons), because in the long shot we are the ones that really know ourselves.

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul.

 

 

 

 

 

Getting It Together

I will appreciate if you come around  the 13th of February for a visit.  I hope the information that will published here meets your expectations.

Also, I will love to hear your voices.

If you have a story to tell about how you are able to manage your Myasthenia  and stay healthy (relatively speaking) and positive, you are invited to leave me a message or email me at myastheniafitness@gmail.com.

This date marks my wedding anniversary and also it was before my 20th anniversary (eight years ago),  when I was finally diagnosed with Myasthenia Gravis after almost two years of trial and error and many, many visits not only to various doctors, but also to the hospital.