You Can Do This or That

Dear readers,  as a MG patient I get a lot of “you  can’t do this” or “you can’t do that” sort of speech more often than I should.  However, once in a while my ears turn deaf to all those assumptions.

Against to what other people may think they know about me and my MG, I decided to plan a holiday in New York and visit my daughter in school, where I would do this and that.

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I had a schedule with my six year old and was not going to deviate from it.

Consequently my journey began.

I  walked blocks and blocks on Amsterdam to buy Hungarian pastries and find about how they’re done and what’s in them.  I returned to the shop twice and saw everything in between.

I walked the Central Park Zoo and made sure he saw everything there was to see.  Actually I compromised for my family’s mental stability, my goal was Bronx Zoo.  Didn’t get around this time, but sure am next time.

I hopped on the Metro to the Museum and sat on a bench with my friend Teddy Roosevelt chatting about why was he interested in Puerto Rico after winning the Hispanic War back at the end of the 19th century, and had a wonderful time with Ian digging some artifacts out of the sand.

Even though I am a very resilient person, I could have not done it without a little bit of help of a high dose a prednisone my neuro let me have while I was in NYC.   Now it’s time to get back to my day to day life and my prednisone needs to come down. I know I’ll miss having that little extra pump for my day, but vacations are the small pockets in life where you get to live with a little bit of fantasy going on and sometimes we just need to have that in our lives if even for a small amount of time.

Meanwhile my friends,  let go even if for a little bit, be kind to yourself and others and make me company on my many journeys  to wellness.  Thanks for stopping by.

See you around fellow snowflakes.

 

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Facing Our Share of Loneliness

Dear readers,  regardless to say and I’m sure all of you know that life brings hundreds of sounds that people, animals or things make into our lives.  However,  I’ve lived  through days surrounded by these sounds and at the same time I’ve felt a compelling sense of loneliness.

We all face our share of loneliness.

The ironic part is that like robots  we respond, interact and even manage to laugh  about or with those who surround us. However, we feel lonely in a room full of people.

Since I have a big family, I have a busy phone and kitchen. My husband and myself satellite around our kitchen and phones. I listen to endless conversations and always try to be a good listener and to an extent try to fix things that I feel are wrong if I can. In other words, I try to make like comfortable for all of them. Fill in voids with my voice and cheer them with my laughter, comfort and hug them all as much as I can. Nevertheless, I’m trapped in a lonely world sometimes.

Lonely Path

Living with MG is a lonely path.

It would be nice to listen to someone ask me not if I’m well or not, but to listen to,

“How are you feeling?” But for real.  Actually an outlet to let go of all my steam,  to bear my soul, or to spill it all out.

My loneliness is not but a stream of thoughts about my life and how it’s changed during the past ten years.

My loneliness is a fair cry of a bird that wants to spread her wings and fly to the vast horizons.

Don’t get me wrong I know that I’m loved and cherished, and  always have been.  That’s not something I’m enjoying now because I’m ill, but it’s been part of my life ever since he became part of it as well. However, that doesn’t take away how I feel.

I’ve come to terms with the fact that my loneliness is mine to face only.

So my dear friends, next time the sun comes up with its majestic sunrise and accompanying sounds I will move on trying to cope with my loneliness and making the best of it.  Maybe next time around  I’ll find an opportunity to talk to someone of things that are important at least to me.

Don’t forget to be kind to yourself and to others.

Thanks for stopping by to read about life with Myasthenia and making me company on my journey to wellness.  See you around.

Life’s Manuscript

Dear readers, I like writing my blog mainly because I get to share my feelings with others, but most importantly with myself.

Well, probably your asking yourself, “Why?”, “Isn’t the point of having a blog, trying to get noticed out on the vast horizons of the world wide web?”.

Everyone seems to be craving getting their fifteen seconds of fame.

For me sharing my thoughts on life, wellness, and so much more people who have MG have to deal with is important, but finding my voice is as equal  or even more important.

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A voice that is often silenced the moment you say something that’s not in the manuscript. I don’t know if you get it or not, however for me it is a reality that hits home more often then I liked to admit.

The moment that I try to say something like,

“Life stinks.” (Believe me it truly does sometimes.).  Someone in my family will jump to begin saying, “You have so much.”

Do I???

These are the moments I miss my daughter the most.  She always says,

“Mamita, it’s okay if you think life stinks, you have a right to feel anything you want. Things don’t have to be okay.”

That’s part of dealing with all of this.

Having such a debilitating disease takes away so much, it’s overwhelming. Specially when you see everyone moving forward and you’re just sitting there watching as a bystander.

You know, I have an older sibling  who I admire very much.  We overcame a difficult childhood as best as we could.

I have mixed feeling each time I have to face the fact that he was able to complete a thirty year career in the Army overcoming a lot of things that happened to him along the way, and now as frosting on the cake, he’s about to begin a new career facing his retirement. He has a motorcycle he rides during the weekends and he seems to be happy most of the time.  In a nutshell, he’s free.

I miss my career so much it hurts sometimes.  Today the feeling of despair just creeped up on me and for just a second I felt without a purpose in life.

I thought , “Is this what people who feel like dyeing experience?

My life seems to be lived through a loophole, seeing only what others want me to see and even more dangerous pretending that everything is fine.

Nonetheless,  I snapped right out of it.

I still feel sad, but part of being well is our capacity to be sad.  As the day came to an end, I got my gardening gloves and this and that as I listened to Barbara Streisand sing about love, sorrow,  and life.  They say pets sense when something is wrong, so needless to say, my dog sat near me as I tweaked a bush or two, and got a longer pat than usual.

So my friends it’s fine to yell once in a while, even if it is to yourself, that life does suck for some more than others sometimes and it’s perfectly normal to feel bad about it and yourself, even if we snap out of it in a second or two.

See you around and remember to be kind to yourself and to others.

MG & Sex: Security or Mystery

Dear readers, having a chronic illness doesn’t mean we can’t spice up our relationships with some mystery now and then.

Security or surprise

Even though my husband offers me on a regular basis love, compassion, and most of all security, sometimes I like to run away from that same security.

I’m an incurable romantic spirit.

I absolutely love to read romance novels and one of the things the male protagonist always has is the  “mystery” factor.  I’m not gonna get a thrill if my  protagonist is reading the newspaper in the kitchen counter.

The thing is, sometimes I ask myself  “Am I entitled to have that mystery in my life even if I have MG?”.

Well, I’ve come to terms over the years with this interrogative and have  come to the conclusion that not only me, but all of us deserve to have everything that a relationship has to offer.

On my own, it’s hard to come up with great ideas so I often get inspired by this amazing relation therapist Esther Perel, who by the way is a Ted Speaker and after  reading and listening to her I come up with an idea or two.

Now here comes the best part, as a person who has MG I have to be extra creative.  Now this can go in two different directions. One, we come up with new ideas or the other way around,we come up with no ideas.

You see my dear friends, it’s not bad at all to want more than we have sometimes.

Sex for MG patients, is a bit like every other thing in our lives.  We have to wait sometimes till the good days come around. That can add to the surprise factor, because in the moment you least expect it, Wham, you get to have one of those days.

If I’m having an extra extra good day, we go out for a dinner date, if not we stay at home cuddling and just talking about things only related to US. We leave everybody and everything out of the equation even if its just for a little bit.

When I want to wear a nice piece of lingerie or something nice for a dinner date online shopping works fine for me.  My secret for perfect fitting is that I shop at the same stores I used to go to and I try to buy the same lines of clothing or lingerie so I know how the sizes run.

Believe me, it’s all worthwhile the effort when my husband gives me the “delightfully surprised look” and words fail to express how great I feel about that.

So you see, my dear friends we all need security, but we also can’t leave out some element of surprise.  Each one of us gets to chose what that element will be. Don’t miss out on anything just because we live with a chronic illness.

Please, don’t forget to find meaning and purpose in each day, and to reach out to others creating bonds of sister and brotherhoods.

See you on my path to wellness.

 

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.

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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