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.

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.

Happy Birthday to Me! Three Years Sober!!

I can hardly believe I haven't had a single drop of wine in three years!!  My life has done a complete 180.  Of course, now I'm married and have a daughter which is a huge change in and of itself but even before my daughter was born, sobriety had completely changed my life.  After I quit drinking, I enjoyed waking up in the morning and actually feeling good.  I wasn't getting chronically sick and didn't have to mentally beat the crap out of myself every morning for doing again what I had promised myself I wouldn't do.  Whole portions of my week became a blur or disappeared from my memory completely.  For example, a friend would call to say she'd just bought tickets to "the show".  Not having a clue what she was referring to, I'd ask subtle questions trying to piece it together.  Apparently I had agreed to attend some event when I was drunk but had blacked out and had no recollection of the conversation.  I had to check my cell phone's call log in the mornings to see who I had "drunk dialed/text" and therefore how late I'd been out and where or with whom.  Friends were becoming angry at me for being unreliable.

So now I'm reliable, stable ...and boring.  I would never mention this at an AA meeting but there have been, for me, some negative aspects of becoming sober.  Let me first emphasise that I don't want to in any way imply that I regret becoming sober or discourage anyone from becoming sober.  Sobriety IS the right choice if you're an addict.  It's the only choice for survival. 

As one who suffered with depression since childhood, I was never confident being around other people, in fact I didn't really want to be around people.  I also have many anxiety issues and a tendency toward agoraphobia that I acquired in early adulthood.  This combination leads to a somewhat solitary life with very few, but good, friends, people I can really trust and have known for a long time.  Many of my friends were big drinkers of course, being that I spent a good deal of time in bars.  I don't go to bars anymore and on the rare occasion that I do with my husband, I can tell my old friends feel awkward around me.  After all, I don't act like the same person they knew and they just don't know how to relate to me anymore.  I was a fun drunk.  I danced, sang and told everyone I loved them.  I endeared myself to a lot of people and was everyone's best friend.  The sober me is almost the complete opposite.  I walk with headphones on so I won't have to talk to anyone and when I'm somehow cornered into having a conversation, it's very uncomfortable unless I know the person really well.

As an unfortunate result of sobriety, I have become very lonely.  My job and home situation only exacerbate this feeling.  I manage a small hotel which is also where I live.  This allows me to take care of my one year old daughter which is a mixed blessing.  On the positive side, I'm able to raise my daughter myself and not have to pay for childcare.  The troubling side is that all of my "worlds" are blended together.  I can be bathing my daughter when the phone or doorbell rings.  I can't leave her alone in the tub so I have to ignore it.  On the other hand, I may be on the phone taking a reservation while my daughter is screaming in the background, which isn't very professional sounding to the person on the other end of the line.  Then there's the housework.  My husband seems to think that since I'm "home" all day I should be responsible for doing the laundry and cleaning the house.  He doesn't seem to get the fact that I'm doing two other jobs at the same time as well.  Anyone who doesn't think childcare is a full time job has never tried it.

I sit here in my apartment day after day just me and my daughter, leaving occasionally to check our mailbox or pick-up something at the market.  If I'm lucky, my husband is home and I can go out alone.  If he isn't home, I have to be feeling well enough to carry my daughter and her stroller down two flights of stairs, then walk to the post office or anywhere else I want to go.   Of course while I'm at "home" I'm answering the hotel phone, checking people in and out, dealing with the housekeepers, compiling the monthly financial and occupancy records, ordering supplies and dealing with any other catastrophe that may arise.  For example, last week our hot-water heater sprung a very large leak and needed to be replaced.  I had to beg a mainland plumber to come over to fix it.  He finally agreed and had a new hot water heater put on a barge that was headed to the island.  (We do have plumbers on the island but they're usually so busy they don't even return your calls.) 

The best friend I had on the island moved to the mainland and doesn't come over very often so basically I have no friends here.  One of my good friends was (and has been) trying to get sober for years but keeps going back out ("falling off the wagon" for those non-alcoholics). I couldn't hang out with her anymore because I never knew if she was sober or not and I couldn't handle the back and forth of it.  Basically the only social life I have is the occasional AA meeting.

So, for me, there are definitely some negatives to becoming sober, but I don't regret it for one second.  I had to do it.  Mine is a unique situation that leaves me lonely and overwhelmed at the same time, but also happy to be able to spend so much time with my daughter.

Anyway - HAPPY BIRTHDAY TO ME!!!

Good Days and Bad Days

Fortunately, I can classify the last few days as "good days" relatively speaking of course.  I was actually able to take a walk this morning and at a somewhat normal human pace.  Now that it's evening, I'm getting the sore throat, shortness of breath thing, but no pain.  Pain isn't actually my primary complaint.  I do have pain a lot of the time all over my body but it's more like an ache.  Sometimes pain shoots through my extremities but it's never as severe as I've heard other fibro sufferers report.  My main problem is fatigue and shortness of breath.  When I'm in the midst of a flare, I can't do anything.  I can barely get up and make myself something to eat (like a sandwich even) before I'm getting light headed, starting to sweat, becoming short of breath and feeling as though my legs are just going to give out.  Walking up stairs has become a horrible experience.  My leg muscles feel so weak, I have to summon all my strength to lift them up each stair.  Unfortunately I have to ascend one and a half flights of stairs just to get to my front door.  Once I do get in the door, I'm spent.

I've been trying to eat really well.  I've been eating lots of raw fruits and veggies and cutting out as much sugar as possible.  Cutting out sugar (and other "bad" foods) is very hard for me because I have hardly any self-control.  I think I may actually have a bit of an eating disorder.  If there's a box of cookies in my kitchen, I've been known to eat the whole thing in one sitting.  I absolutely can't help myself, which is why I have very little food in my house.  I only buy what I'll need for the day or next couple of days.  I used to binge when I was a kid.  Before my mom was home from work, once I actually ate an entire box of brown sugar because there was nothing else around.  Fortunately I had a really good metabolism and stayed skinny as a rail (I wish I could still say that ).  I guess I shouldn't be surprised that I have a problem with food, being that I'm a recovering alcoholic.  I'm obviously an addict in other aspects of my life as well.  In two days I will have been sober for three years!  I can't believe it.  I never thought I could go this long without a drink.  Of course now I have a daughter which is a whole new motivation.

Wow, I really digressed from my original topic.  Anyway, I'll try to keep eating well and exercising in moderation, when I can, and hope it makes a difference. 

Now that I'm finishing this post, I'm starting to get achy and my hands are hurting, which means I should go to bed (even though it's only 9pm). Oh well, you have to take the good days, or even hours, when you can.   It sounds cliche, but that's something I learned in AA and you can apply to  your whole life.

God, grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and the wisdom to know the difference.