ME/CFS, Fibromyalgia & Marriage - It All Comes Down to Trust

The damage ME/CFS and/or Fibromyalgia does to a marriage can be profound.  Its invisible nature makes it seem phantom-like, drifting in and out of reality (except to the sufferer, of course, to whom the disease is never, even for one moment, forgotten).  Since there are no blood tests to prove its existence, there can be a veil of distrust and resentment that hangs over the relationship.  No matter how supportive your spouse is, there is always that nagging question in your mind  "Is he supporting me out of a sense of duty or does he really believe I'm suffering?". 

I often wonder how long my husband will be patient with my ME/CFS & Fibromyalgia. Will there become a time when he finally says "That's it!.   I've been putting up with her claims of this debilitating illness for years and there's no proof that it actually exists. It never gets better and no doctor seems to be able to help her. Have I just been a victim of her delusional hypochondria all this time?"

Then of course there's the self-doubt. Maybe I really am crazy. Maybe this really is all in my head or I just have too many negative thoughts and emotions. These crazy ideas don't last long, however, when the pain or fatigue reminds you - this is definitely NOT "all in my head."

Most people don't like to complain about their pain because they know it can be trying on their friends and families and also they don't want to appear weak.  Unfortunately, with ME/CFS & Fibromyalgia, the moment you stop complaining, your suffering is forgotten by many around you.  You look fine, so why shouldn't you feel fine.  When I first became ill, I complained all the time, trying to get sympathy from my husband who, I thought, didn't at all comprehend what I was going through.  I'm sure my complaints were interpreted in a different way from his point of view however.  Now I try not to complain as much or moan and groan when my pain is particularly bad and my husband is more likely to ask me how I'm feeling. I can definitely say our relationship is much better for it.

With no way for your spouse to directly experience what you are feeling, it all comes down to trust.  If a marriage is built on trust it has a good chance, I think, of surviving ME/CFS and/or Fibromyalgia.  It definitely takes patience and understanding from everyone involved.  Spouses have to learn to be patient with their ill counterpart and just as importantly, the sufferer has to be understanding and realize how difficult it must be for her spouse to see her hurting and not be able to do anything about it.  In a marriage where one of the two is afflicted with ME/CFS and/or Fibromyalgia, both definitely suffer, just in very different ways.

Surprise Surprise

My parents left on Monday and what I feared but assumed would happened has happened.  My husband has not picked up at all from  where my mom left off - far from it.  He's behaving exactly the way he did before she came.  He's acting like a childish brat who rolls his eyes or comes up with lame adolescent excuses every time I ask him for his help with something.  I'm beginning to realize that this marriage will soon be over.  I cannot live with a man who treats me with such disrespect, especially being as sick as I am.

I just finished a carb-free "two week test" which may have indicated I f I had a carbohydrate intolerance since the symptoms are almost exactly the same as Fibromyalgia (strange how so many things are).  I didn't really see any change so I went on a monumental carb binge on the last day of the "test".  I pretty much feel the same as I did before I did the test.  I'm still intrigued though with the idea that I may have some type of food allergy or intolerance.  I've ordered a book which is a step-by-step program to test yourself for these situations.   I understand it can be a many months long process.  Maybe it's just a scam, but I'm willing to try anything at this point.  The $500 per month Cymbalta hasn't done a thing for me.  I've tried so many medications and the only one that helped was Prednisone which my doctor promptly took me off  saying that it wasn't safe to take long-term.  What a tease.  There's got to be something.  I'll let everyone know how the program is working after I start.  Wish me luck!

Mom to the Rescue

Tomorrow I will finally get the help I've needed for so long. After so much struggling and sickness I will be able to rest and hopefully begin to get well. Trying to manage this hotel at peak season, take care of my daughter and deal with my childish husband all the while feeling only partially alive has had me wondering more and more why I keep going. After becoming very concerned about my current state of mind and hearing my desperation through the phone, my mom booked tickets on a flight from Newark to LA that arrives tomorrow. My hope is that I will actually have some extended periods of time to rest and recuperate. I'm ecstatic that she's coming but at the same time, humbled that at age 38 I need my mom to fly across the country and rescue me.

My husband left about a half an hour ago after I told him his choices were the couch or his boat for the night. His immaturity and insensitivity have hurt me one too many times. Although I have asked him thousands of times to take over doing things I can't do anymore, he refuses to pick up the slack. My requests are always met with a roll of the eyes or sigh and often a sarcastic remark. I can't understand how he can be so insensitive to my suffering. It stuns me sometimes. He sees me pushing myself until I'm sick and just sits there watching (or not watching). When I ask him why he hasn't done something I've asked, he tells me he's been busy doing other things. I've decided that I'll stop trying to psychoanalyze his bizarre, hostile behavior and simply not tolerate it anymore. It's so important for me to have a strong support system. I've always hated to ask for help but realize that it's a necessity at this point in my life. I physically can't do the things I once could. I certainly don't need someone in my life making things more difficult for me both psychologically and physically .

Although this is the first time in my life I've had to deal with a debilitating physical illness, the experience of a failed relationship is far from new. If our marriage fails it will be divorced number two for both of us. This time though, there's a whole new dimension to be considered. We have a precious daughter. She loves her father so much and when I think of taking her away from him tears instinctively fill my eyes. One of the few positive things I can say about my husband is that he's a good father. 

I'm just beginning to realize why, for my whole life, I've been so adamant about not having children.  I'm not suggesting that I could have predicted being stricken with this terrible disease and I know that caring for my daughter would be considerably easier if I were well, but I still have this nagging feeling that I've made a big mistake. I desperately hope my little girl doesn't suffer because of my bad judgments. I know I made a mistake in marrying my husband but I've known that for some time. This is the first time there's an innocent bystander.

After a week with no response from my doctor I've decided to take matters into my own hands. I halved the dosage on three of my medications and seem to be experiencing fewer side effects. Unfortunately some Fibromyalgia symptoms are returning. I'm having more pain than I was last week, but not nearly to the degree it has been in the past.  I'll keep experimenting and hope that I can find a point where side effects and symptoms are at a tolerable balance.

Invisible Disease, Invisible Support System

I'm sure when my husband married me he had no idea what he was getting himself into.  To be fair I didn't either.  After the break-up of a long and loving relationship (which I've started to admit may have been a mistake) and numerous failures in the area of thirty-something dating, I met my husband.  I was newly sober after years of abusive drinking and he was living on a fishing boat.  I loved his carefree, boyish nature (red flag - I know, I know) and knowledge of boats and the sea of which I had something in common.  After a short but very passionate period of time we got married in Las Vegas.  After reaching the age of thirty-five, my life-long disinterest in having a child had started to waver.  What I was thinking when I decided to have a child with this man is any one's guess.  Neither of us had children from previous relationships so this would be a first for him also at the age of 41.  Somehow his passion and very persuasive nature got to me.  The first time I missed a birth control pill I became pregnant.  We were so excited that it had happened so fast since our ages were becoming a definite factor in our decision to become parents. 

The first indication of my husbands lack of nurturing ability started to show throughout my pregnancy.  I had looked forward to being pampered, spoiled and fussed over like I'd heard my friends husbands had.  The pampering never happened.  He was excited about the baby, but didn't seem to empathise at all with my discomfort or wish to diminish it at all.

A couple of months into my pregnancy I started to not feel right.  I wasn't throwing up or even nauseated most of the time, I just felt wrong.  As things progressed, I became weaker and weaker to the point that I couldn't stand long enough to take a shower.  I was short of breath and my muscles just didn't seem to work anymore.  I went to the doctor and she did some blood tests.  It turned out that I was slightly anemic but just fine besides.  It was just "a pregnancy thing" she said and explained that my body was undergoing severe changes.  This was hardly news to me.

After my daughter was born the weakness subsided slightly for a couple of months but then it came back to stay.  I felt like I had the flu.  My body ached and I was so tired and weak that it became very hard for me to even lift my new baby.  I won't re-hash all of the details about the ongoing discovery of my Fibromyalgia and all it's seeming unrelated symptoms since I've already done that in previous posts. 

My daughter is now seventeen months old.  I've had two brief remissions but have basically been sick since I became pregnant with her more than two years ago.  The lack of compassion my husband showed during my pregnancy has continued and become more pronounced throughout this entire ordeal.  I really have no idea what's going through his head but somehow I think he resents my becoming sick (although he would never consciously admit it) and feels like he got a bum deal in marrying me.  I've asked him so many times to help out more with things and take on more of the house hold responsibilities, but he reacts with a roll of the eyes, as though I'm nagging him.  Nagging.  That word is the biggest cop-out ever invented.  Somehow (usually) the women become the over-reacting slave drivers and men become helpless victims with the uttering of this word.  But that's a topic for another post.

If I had had any idea that I would become the victim of this terrible disease I may have thought twice before agreeing to marry my husband.  I may also have strongly considered and probably decided not to bring a child into my sickly world.  I love my daughter more than life itself and thoughts like these leave me with heavy feelings of guilt.  What the hell was I thinking?

I told my husband yesterday that it was over between us.  Our continuous fighting wears my already weak body and soul to nothing but a thread.  My husband has many issues of his own such as Post Traumatic Stress Disorder from Desert Storm and some cognitive problems of which I could never guess the source.  I've tried to be understanding to his struggles but his refusal to apologize for his actions (without being prompted)  and his defensive and often hostile reactions erase much of my empathy.  I keep thinking that I have to figure things out for our daughter's sake but at how high a cost?  My husband has already severely impeded my healing process and I have no reason to believe that anything will change.  What kind of a mother will I be if I'm unable to participate in much of my daughter's life?

I should have known better than to marry this "carefree, boyish" "man".  What the hell was I thinking??  I just hope anyone else who is afflicted with Fibromyalgia will really think about marrying anyone who may not be able to deal with the intensity of their illness.  Having a strong support system is SOOOO important.

Me and the Sea

The following is a piece I started writing in 2002.  I've posted it now as a (very long) prologue to my next post:

From as early as I can remember, the sea has played a huge part in my life.  As soon as we were able to hold up our heads, my younger brother and I spent every spring, summer and autumn on our parents 36’ Colonial - "Valhalla", a beautiful wooden 1960’s cabin cruiser.  In the late winter and spring we “helped” our parents’ as it took many full, tiring weekends for them to prepare Valhalla for launching.  My father would replace rotted planks and caulk, repair the diesel engine and an endless list of other tasks.  My mother scraped, sanded and painted the hull and interior from stem to stern, she sewed curtains, cushions & sheets for the bunks.  My brother and I made friends with the other children in the boatyard and we all ran among the dirt piles and chased after hermit crabs in the mud. 

When Valhalla was finally afloat, we spent summers and autumns in various anchorages in New Jersey's Raritan Bay or cruising up the Hudson River, Long Island Sound, Fire Island, Block Island, Cape May and so many other places.  We were all in love with the sea and my father who is of Norwegian descent, claimed it was in our blood.  Sometimes during storms, my brother and I would crouch snuggled together in a corner of the salon, scared and begging our father to turn the boat around.  But he and my mother would reassure us that we were safe, and we knew deep down that we were.  Some of my fondest memories are of sitting on Valhalla's fly bridge, my father standing at the helm, gripping the classic wooden spoked wheel with a grin ear to ear, his dark brown hair blowing in the wind and his eyes tightly squinted in the sun.  As we climbed up waves and surfed down them my father would yell "WOOO HOOO" as though he were a child on an amusement park ride.  I took for granted his ability to fix anything that went wrong or broke down and to steer Valhalla through storms and fog without a hitch.  As a child, he seemed part magician part Superman.  I would lean my head against the rail with such contentment and become hypnotized by the brown foamy water gurgling by the hull (this was during the 1970's before they realized that dumping raw sewage from NY City into the harbor and bay was not such a great idea). 

The smells and sounds of Valhalla gave me such comfort.  During winter, while snuggled in my bed unable to sleep, I'd try my hardest to recreate the sounds of the water swishing past the hull as my brother and I heard it from our bunks in the bow of Valhalla.

In 1984 my father was forced to sell Valhalla due to engine problems that were too expensive to fix.  My brother and I had gotten to the age where we were getting involved with school activities and sports and had begun to take Valhalla for granted.  We didn’t really understand what we were losing until she was gone.  Valhalla had always been there.  She had been a part of our lives, almost a family member.  I remember crying alone after my father told us she had been sold.  He sold her for $500 because her engines didn’t work, and with the advent of fiberglass, no one wanted to do the work involved with owning a wooden boat. She was probably bought for scrap but my father never told me and I'm glad he didn't.   Losing her was a very sad day for our family.  We had made so many memories within her bulkheads.

For 5 years our family was boatless.  We tried going to the beach in the summer to be near the ocean we missed, but somehow it wasn’t the same.  Looking out at the sea from the shore was entirely different from floating atop it.  In 1989 my father was able to purchase an older, used 27’ Bayliner express cruiser.  The joy was back!  It was as though we were picking up from where we left off.  My parents planned trips and again, my brother and I cruised the places of our childhood, now as young teenagers.  As time went on, my parents sold the Bayliner and bought a 36’ Regal express cruiser.  By this time, my brother and I were in college.  Our lives were beginning to take their own paths, but we never passed up the opportunity for a family cruise or just a weekend in Horseshoe Cove.  My family was so happy together on the sea.

I adored my parents’ boat and being out on the sea, but from a young age, I remember staring longingly at the boats in the bay heeled over on their sides with white sails billowing in the wind.  When my brother and I were very young, an older, single man lived on a beautiful wooden sailboat in the dock next to ours.  We became friends and when he invited us aboard, the oil lamps, round brass port holes, gimbaled stove and shiny varnished teak struck me as one of the most beautiful things I had ever seen.  I knew nothing of sailing at the time, but hoped  I would learn one day.  I was fascinated by how fast the wind-driven hulls glided through the water without an engine and as I got older and more concerned with the environment, I loved the idea that they were utilizing a natural resource rather than polluting the air and water.  I had never even been on a sailboat while under sail but their pure elegance drew me in.  I imagined being out in the open ocean, no land in site, sails flying and salt spray on my face.  I began to feel a deep urge to travel the world's oceans on a sailboat.

My life continued to take it’s own course.  Immediately after college, I got married and my husband Rob and I moved to Highlands, NJ a small fishing town on the New Jersey Shore.  I loved living by the ocean, and took every opportunity to walk on the beach after work or on weekends.  My little dog Happy also loved romping in the waves and sand on a hot day and chasing the sea birds.  My husband knew of my dream and thought it might be a good idea, but maybe when we retired.  I was disappointed, but figured I would learn as much as I could about sailing in the meantime and maybe get the chance to crew on someone else’s sail boat.  After all, my older brother had just purchased a 37’ Endeavor sloop.  Rob and I went to Sail Expo in Atlantic City each January and drooled over the shiny new sailboats, but the dream of sailing into the sunset was a long long way down the road.  Rob was more focused on his career.  I continued to work at my crappy low  paying job, all the while wondering what I was really meant to do in life. 

My marriage, for many different reasons, didn’t work out.  Rob and I split up in August of 1999…our 3^rd anniversary.  It was the most painful thing I had ever endured.  I was plagued by extreme anxiety, depression and insomnia.  I lost weight and started wondering what about life made it worth living.  I moved back in with my parents and my dream all but disappeared beneath a shroud of apathy and darkness.  My only priority was making it through each day without drinking too much or eating too little.  The thought that I could even drive to work and back each day seemed an almost insurmountable task.

As time went on, my deep wounds began to heal and scar over.  With the help of medication, my anxiety attacks and depression lessened.  I began to look farther into the future than just that day.  Slowly as I felt my emotional state stabilizing, my sailing dream peaked its way from underneath the shroud and started to occupy more of my conscience again.  It was still a far off dream though.  I could never afford even an old beat up boat, and I didn’t want to do it alone anyway.  I told myself to be patient, that someday, my dream may manifest itself.

Then I met Mike.  On the first day we met, through a mutual friend, I mentioned something about wanting to sail around the world.  His eyes lit up and he yelled “ME TOO!”.  We started dating and as time went on, our plan began to take shape.  We would buy a boat, spend a year or so learning to sail it, then take off for Hawaii.  It was ambitious and a bit foolish in retrospect, but we were on a mission.  I had never felt such a purpose in life.  We took sailing lessons and read every book and magazine we could get our hands on.  We went to SailExpo and attended as many seminars as we could fit into our schedule.  My excitement was at a level I had never felt before.  It seemed as though every decision we made revolved around our plan.  It was all we ever talked about.  It was all I thought about.

We searched the boat classifieds and looked at a couple of “wrecks” when we finally saw Perdida, a 35’ 1972 Allied Seabreeze Yawl, for sale on the Internet.  She was absolutely beautiful.  Touted as a sturdy off-shore cruiser and a classic, we were anxious to see her.  When we finally traveled to Port Washington, NY on Long Island to see her, we fell in love at first site.  She was a bit over our price range, but she was structurally sound and had been kept in pretty good shape especially for her 30 years.  It was possible that she may have been one of the beautiful sailboats I had admired as a child in the 1970's.  She was one year older than I was.

It was January, and we put a deposit down on her.  I had never been so excited.  I couldn’t sleep at nigh,t barely able to believe that my dream, our dream, was actually happening.  Images of Mike and I anchored in tropical anchorage’s around the world flashed through my head like a slide show on high speed.   I continued to read all I could.  I wanted to be an expert on everything.  I made lists of repairs we would need to make and researched on the Internet how others had gone about doing them.  We joined the Allied Seabreeze Owners Association and took advantage of the organization's vast knowledge of Seabreezes.  I read many books about the cruising lifestyle and some of the stories intimidated and even scared me.  I knew that there would be some really bad and scary times, after all, I had experienced some pretty scary times out on the sea, and although they paled in comparison to some of the stories I read, I was confident that I had a solid basic understanding of the sea from which to build upon.  If I were going to be afraid of the ocean, I would certainly have known it by now.  We began buying some of the equipment we would need.  Especially charts of the Long Island Sound, NY for sailing Perdida down to her new home in Monmouth Beach, New Jersey.

I’m not sure when the transition actually took place.  I can’t remember it happening at a distinct time, all I know is that the reasons for my sleeplessness changed from excitement to overwhelming panic.  I started having vivid nightmares about violent storms at sea and survival situations.  I thought in my head “this must be what everyone goes through when they are faced with a change in lifestyle,  I’m just having normal anxiety.  It should go away in time.”  The nightmares got worse not better.  I would wake up sweating and shaking in fear.  I couldn’t go back to sleep.  As time went on, the anxiety level increased during my waking hours as well.  I found that I couldn’t think about anything else.  I imagined every catastrophe that could possibly happen on a sailboat.  The peaceful images of us anchored in a tropical lagoon were gone.  They were replaced with images of a sinking boat, 40 foot breaking waves, the mast snapping off and worse, Mike being knocked unconscious and falling overboard.  I began to question myself like I never had before. "Maybe I wasn’t cut out for this.  This was too intense.  I’m too much of a mental case, after all, I’ve suffered with Major Depression since childhood."  My excitement and faith in myself all but disappeared.

Soon my anxiety began to seep its way into other aspects of my life.  I was having a hard time at social gatherings.  I felt inadequate and never knew what to say to anyone.  Conversation was such a struggle that I began to fear holiday and family times.  I made excuses for missing dinners and gatherings and self-medicated with lots and lots of chardonay.

We sailed Perdida down from Port Washington in April of 2002.  My father and I took the train to NYC then the Long Island Rail Road to Port Washington where Perdida, our new boat, was docked.  I was definitely in a state of panic, but my father was there and that made me feel slightly more at ease.   The night before we set sail, I had a full blown panic attack on our newly purchased dream boat.  I shook and cried uncontrollably.  I felt like my life was completely out of my control. Why was this happening to me?   I couldn’t stop crying and shaking.  My heart felt as though it would pound out of my chest, and even the sight or mention of food made me nauseated.  Mike tried to comfort me, but he didn’t know what to do or how to help me.  I can’t remember ever feeling so terrified.  I didn't know at the time, but that horrible out of control feeling was about to become the thing that would rule my life for the next few years.

What was happening to me?  Why was my brain so out of control?  How could I go from being so excited and confident to shaking and terrified?  Even being on my parents' boat, something that had always been so comforting, was giving me anxiety.  I was becoming deathly afraid of the one thing I had always loved and taken comfort in - the sea.  How could this be happening? 

I began seeing my therapist again after not having gone for over a year.  I was put on a different type of anti-depressant, one that had shown positive results in those experiencing anxiety.  I was also given  Ativan, a sedative, for the severe attacks.  We explored my problems in therapy.  There were many times I just wanted to give up the dream…give up the boat.  It was just too painful, too torturous.  Somehow, weekend after weekend; I summoned the strength to go out on the boat even though it was like a horrible form of torture.  I took the tranquilizers and talked myself out of most of the bad attacks, but some took a hold of me and I just couldn’t shake them loose. 

One afternoon Mike and I were getting ready to back Perdida out of the slip to go out for a day of sailing.  He was at the helm and I was on the bow to throw off the dock lines.  Suddenly, I was hit with such a severe sense of panic that I became paralyzed.  My vision became so blurred, I could barely see.  I was so light headed, I thought I would pass out.  It’s hard to explain what was going through my mind.  The only words that come to mind are primal panic.  Panic so strong that I thought I was going to die any moment.  I have heard that when a person is in a life threatening situation, their "life flashes before their eyes", if you'll excuse the cliche.  Although I have never realistically been in a life threatening situation, I imagine what I felt was similar.  Images of death and catastrophe flashed through my mind and I could hardly breathe.  My heart was pounding and my hands were shaking violently.  Mike was yelling to me from the helm but I couldn’t move.  “What are you doing ?” he yelled repeatedly.  Finally he re-tied the stern lines, shut off the engine and walked up to the bow.  I was still clutching the bow line tightly in my hand.  He tried to take it out of my hand but I held it tighter.  I was scared to death to let it go.  Why?  Well…..that’s the question I have never been able to answer.  I spent the next few months trying to figure it out.  An explanation alluded me, and still does.  Obviously it had something to do with my fears about sailing or the ocean, but what exactly?  Why now?

I continued to force myself to go to the marina almost every weekend.  Every time we left the dock or even talked about leaving the dock, the anxiety kicked in.  I tried to make excuses for why we shouldn’t go out.  Mike was very supportive and tried gently to force me to confront my fears.  As the summer went on, my fears ebbed and flowed like the tide but were always there under the surface if not right out in front.  As we experienced more things, my fears became less irrational sometimes, but they were always there, holding me back as though I were lashed to a tree.

After having her transported by truck, Mike and I are now living and cruising on Perdida in Southern California and planning our Hawaii trip in April or May of this year.  I still haven’t given up the dream, although it has been the hardest thing I've ever lived through (yes, even harder than the divorce).  I am still dealing with the disappointment I feel towards myself and the feeling that I’ve let us both down.  I have been very humbled.  How could I have been so arrogant to think that all of my dreams would happen without hard work and even pain and suffering?  The real lesson here is that when something is really important maybe it shouldn’t come easily.  By working hard for something or someone, only then does it become a real part of who you are.  The suffering is the real gift if you can learn to accept it as such.  It is the everyday journey you take in life that defines you as a person, not your final destination.

So Very Sick and Tired

I feel absolutely horrible today.  I know my husband is growing tired of my being sick all the time but I'm so hurt by his apparent apathy.  I realize it must be hard to live with someone who's unable to do things she used to be able to, or things most anyone else can do for that matter.  He just can't seem to get it through his head that it's my body and mind that are suffering.  I think he's more upset about my not being able to do house chores or take care of the baby more than he is about my suffering.   I'm  starting to think that if I can't find a way to manage this disease he'll get sick of having to do house chores and not having sex when ever he wants because I'm in too much pain or too weak, and leave.  I know he'd never want to be away from is daughter who he loves more than life itself so I can foresee a painful custody battle (that I can easily win) and my moving back east to be near my family who will actually help me and care for me.  Then he can go find some slut who will have sex when ever he wants (which is always).  Is the man I married really that shallow?  I find the thought crossing my mind more and more and it hurts when it does.  This disease is going to ruin my life on so many levels.  My doctor doesn't return my calls and my husband thinks I'm a hypochondriac or something.  I don't know what he really thinks because he won't talk to me.  He doesn't know how to talk to me or anyone for that matter.  How can I be so depressed when I have so many antidepressants coursing through my veins.  I can't stop crying. 

I'm supposed to have a doctor appointment Monday.  I feel like a broken record or more like a fool.  I sometimes think I'm the victim of a cruel lab experiment.  How long can we string her along before she completely looses her mind.  If that's the case, the experiment may soon be over.  Especially if it destroys my marriage.