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.

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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.

Back to Day One

Dear readers, trapped in the nuisance of dieting I’ve lost track of the days.

For starters, my husband got on the dieting train and he’s done much better than me.

I’ve mostly been haunted by PMS.  I’m still wondering why in the heck am I still getting periods at my age.  I will be more than happy when my period goes away forever.

Now getting back on track is going to take some willpower.

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via morguefile

For me it’s all about the cheese.  I love to eat cheese!

As I write  this post some cheese and crackers are laughing at me.  Teasing me, luring me into just taking a bite.  They  know I’m not suppose to snack on them.  However, my grandma would always say, “El que rie ultimo, rie mejor” which means thee who laughs at the end, laughs with more joy.

So, if I were the cheese that’s in the refrigerator and the crackers in the pantry, I would be extremely quiet because I could use some carbohydrates right now.

Which leads us to the most important part of this all.

Tomorrow I’m at Day 1 all over again.

And this time I intend to go straight to Day 10 without hesitation. Why Day 10?  Well, because those first ten days are crucial to staying on track.  My husband already is feeling the benefits of dieting, his size 36 pants need a tighter belt for fitting.

Finally I just need to add one word to this, FOCUS.

It has to become my mantra for pulling this off.  Each time temptation comes around the corner, I need to repeat FOCUS.

FOCUS on feeling better,

FOCUS on walking better,

FOCUS on living better, and so much more.

And don’t forget to do something that makes someone’s day better;  make me company on my way to wellness; and, repeat my mantra FOCUS.

 

 

 

A Prayer For You

Dear readers,  I take my life one day at a time and I’m sure that all of you do the same thing.

Our routines and so much more have a direct impact on those who surround and love us deeply. They live through our ups and downs, sometimes voicing their feelings and other times just remaining silent.  It’s hard on us and at the same time for them as well.

Sometimes I forget that and today as I went through my daughter’s things because she  recently left to begin her new school year in New York I was remembered of that as I read   a prayer she wrote during the Summer.  One that I share with all of you today with much love.

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“I heard once that prayer is about redefining our desires.  It is about being open to ask for guidance and even though we do not control our journey that does not mean we are astray.

Today I pray open to hear, even when that fills me with fear.  

Dear Gracious God, I am not praying to give excuses or explain my silence.  Whom I am trying to fool? My silence is yet nothing more than silent panic. 

You know that.

I pray for longer walks, for less tiredness. 

I pray for more smiles and restfulness of spirit.

I pray that the spirit might comfort the body.

I pray for shorter naps and more energy.

I pray for coffee @3 pm between shared stories. 

I pray for our usual complicity to remain intact in times of sickness. 

I pray for our unspoken bond to grow stronger in the face of weakness.

I pray that we can share prayers.

I pray that her body can gain strength while her spirit stands strong. 

For now, I pray that she can rest knowing that we will do our best holding her so she does not fall.

Amen”

May the words of this prayer belong to all of us today.

 

 

 

The Patient of 152B

Dear readers, it’s been a while since I’ve shared anything with you.

Sorry for that but, I’ve been feeling weak for some time and all of us know that when we’re weak, we’re weak.  Everything in our lives becomes a colossal task.NYUWork-009

via morguefile

Which by the way got me admitted on Monday for an IVGG treatment.

When I’m in the hospital I feel vulnerable, and a bit lost to tell you the truth.  It’s nice when I hear a resident call me by my name, instead of the patient in 152B.

Most of the nurses who work here don’t really know much of Myasthenia, never mind pronounce it.  Yesterday I had the opportunity of having a young nurse who actually came around and talked to me about MG.

As she was giving me meds and changing my infusion lines, she told me she had never had a patient with MG, and as soon as she got home she was planning on getting information about the disease.

I told her that she was more than welcome to ask me anything she wanted to know.

We had both a nice and educational back and forth for a while, it felt good that she was interested enough to ask.  Awareness is an important thing for MG, few people understand what this is all about.  I thought about the hashtag #HaveYouHeardofMG that has been going around lately as we spoke amicably.

I face so many unknowns after those two bracelets are fixed on my wrist.  One with my name and information and the other orange label that warns nurses and medical personnel that I am at risk of falling.

Thoughts of how things will turn out this time around feed my fears and jitters take residence in my tummy.  Never mind if the people who love me the most in this world try to reassure me it’s going to be okay, it’s never okay.  Although, I do appreciate their love, and the strength they give me along the way.

In a world where patients are treated with dignity and respect as human beings and not numbers or otherwise maybe these fears would be less, but sadly we don’t have this type of healthcare system.  The system that prevails is one where our family can’t leave us alone for a moment under the care of nurses and medical personnel due to crippling fear that we will be neglected and put at risk.

Testament of this would be my daughter running to fetch my tray because they forget to bring it in because I’m in preventive isolation and my food tray is the last to be delivered in the hall.

So, my dear friends today is not a good day for me, however I know and believe tomorrow will be better.  If I loose the ability to believe in this I have lost one of the most important battles we deal with every day and that is never to loose hope.

See you around the corner.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stress & MG: Life in a bubble

Dear readers, all of us now that life is stressful.  So, how can we actually live without stress.  The answer for that question is quite simple, WE CAN’T.

All of us sick or healthy deal each day with different amounts of stress.  Staying on the positive side,  I would say that stress will not affect us as much if and only if, we learn to mange it in a healthy way.

 

Living in a bubblevia morguefile

Gees, that sounds beautiful, but really some situations are darn difficult to manage nevertheless the ways and manners we cope with them.  For example, my  23 year old son tells me at two in the morning, the following,

(while I was  busy dealing with last minute decorations for  my soon to be five year old’s theme  birthday party, which was the next day. )

“Mom, since I want you to be part of the process, I have something to tell you,  I’m planning to get married like probably in August.”

“What are your thoughts?”

First, let me put the situation in perspective for you, he has one semester to go to complete his masters in psychology, they started dating last year, he can’t support himself, but his girlfriend and him want to move in together during the Summer, but her parents are very Catholic and they feel the necessity of her getting married before living together.

Well, I responded,

“I think this whole idea is a bad one”…., and I went on to tell him why I thought this idea was bad in general.  But, this post isn’t about my son’s lousy choices, it’s about how my and your quality of life is disrupted by stress.

Whoever thinks we can go on with our lives and not  deal with stress is out of his or her mind.  How in the world can situations like these or any you guys might be going through not be stressful?

We are going to be stressed for Pete’s sake, if not we would be living in a bubble.  Remember that John Travolta movie, “Boy in a Bubble”?   My dear friends it’s nearly impossible for us to live this way.

On the other hand, stress is one a key element in our setbacks and flares.  Nobody right in this moment have any doubt, that I’m dealing with a major flare in my condition.  While I sit in my desk writing , I’m waiting for my neuro’s call because all my symptoms are up and front.  The night of his announcement, I needed to go on Atrovent due to severe coughing that came while I was sleeping, my legs are weak, and my voice is no where to be found.

The big question lurking in my mind is, how can I deal with this shitty situation without getting sick?

Getting some counseling,

Talking to someone,  or

Letting it go.

Honestly I don’t know.

But hey, nobody said life was easy and we know this better that any healthy person. There will be moments in my life  filled with grief, anxiety and so much more, nevertheless even if I’m tired most of the time, I need to pull through because I’m  a strong person and I don’t want to live in a bubble and I know neither do you.

Thanks for joining me on my path to wellness, talk to you soon.

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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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