I really need to have sex with my husband. Not just want, although that's definitely a factor, but need. The problem is… we're not exactly having sex these days, at least not on a regular basis.

It came up in a talk we had as we drove back from the pain doctor last week. I am regularly flirting with him, throwing out double entendres and dirty jokes, making sure to touch him and get Physical Touch in there, and I get chuckles out of him and sometimes a bit of reciprocating physical affection, but more often than not it's just a verbal acknowledgment of the joke and an implied rejection in the silence that follows. Sometimes I get an overt rejection, and rarely rarely rarely does he actually take me up on the offer.

I mean, I get why this is. His reasons are perfectly valid and acceptable, but that doesn't lessen the sting of rejection or the cumulative hunger and longing. It's stress, you see. Our life is super mega stressful right now because of the finances and my physical ailments, and it's been building and building and no matter what we do it just seems to keep piling up around us like a big, invisible grave and I just want to scream because it's just so hard. I feel like I can do anything, take on any challenge, with Drogo by my side, but the stress is eating away at him and burying him deep in soft, suffocating layers and I just don't know how much by my side he is anymore.

I'm a very sexual creature. I am, and I own that. (It's remarkable to be able to say that without shame; something I would never have been able to do a year or more ago!) It keeps me feeling emotionally connected, it relieves stress, it fights pain, and it regulates my mood and keeps me some above the incessant swirling blackness of depression. Being celibate on my terms is one thing, but this enforced dry spell? I'm not handling it well. He said that stress has killed his libido, and okay, that's valid. That's legitimate. But it hasn't killed mine, at least not entirely. Granted, I don't want to have sex as much as I did anymore. I just don't have the energy, I'm usually feeling crappy, and I just… don't. But I have never, ever turned him away when he makes advances. I know that if I give it a minute or two I'll get into it and want to proceed, and sure enough, that's what happens. It's just… you can only be turned down so often before it's just not even worth trying anymore.

I'm constantly flirting, trying to initiate… and now I understand the stories told by men with frigid wives, wives who have lost interest or gotten too busy and distracted with the family. I so get it now. The awful part? The awful part is that I know specifically several men and women who would jump into bed with me if I so much as gave half a consent. I can name them, count them on my fingers right now, but the only thing stopping me is loyalty and love to my husband. It just… it hurts, you know? I know it's not about me, but after a while you just kind of start to wonder, is it me? Do you even want to be in this marriage with me? Why am I so undesirable to you? How can I be such a hot commodity to everyone else, but you won't give me the time of day? And I can't… I can't do that anymore. So I guess I'm going to stop trying. What's the point? It only ever works when he feels in the mood anyway, so why bother? I'm so tired of getting turned down, turned away. Take your stress and leave me the hell alone.

…he doesn't even cuddle me anymore. The loving byplay of yesteryear is gone, and I am so achingly empty and alone. He knows how I feel-- I've not been secretive about this--but I suppose he feels as helpless as I do. He understands it, too. His comments and conversation on the topic makes that blatantly clear. But I just want to feel loved again… I know he loves me-- he says so. (Usually after I've said it first.) But I don't feel it. I feel like a nuisance, a burden, a more or less welcome roommate, an expensive pet maybe. No, he cuddles and caresses the cats more than he does me, so I don't even rank that high.

It hurts. It just hurts. And I don't know how to fix it except to fix myself and get better so there won't be any more crazy bills and not enough money in a paycheck for our basic necessities plus my medical needs and he won't withdraw every night into his man cave and while away the hours not thinking, not feeling, until he climbs into bed and falls asleep.

I know he loves me. But why can't he suck it up and show me? I want that more than anything in the world right now.

Update-- After posting this, I went ahead and succumbed to my grief and the body wracking sobs, though I tried to keep it mostly quiet. Somehow, Drogo has this freaky, uncanny talent of knowing 99% of the time when I'm crying and where I'm at, and today was no exception. I was just picking up my laptop again to edit the phrasing on some of the words (can't even remember now…) when he came into the room, laid down just behind me, and wrapped me up in a big, spooning embrace. That, of course, made me lose it even further, but I feel like I did a good job pretending that I was unaffected, even if he could completely see right through it. At first I thought that he was going to bed but it was much too early for that, so when I guessed/asked about it he answered wryly but truthfully.

As we lay there, ensconced in one another's arms, I found my courage and slowly spoke of most of what I'd written here, not even bothering to change the words. a.) I found them in the first place and I can re-use them if I so desire, b.) they applied so perfectly to the present situation.

Anyway, he vowed that he would be more affectionate with me, said that sometimes he forgets I need the touchy feelies so much. I really appreciated that (still do), and the conversation was quite productive. I feel much more loved, and in fact he answered one of my questions with a surprising yet pretty much protected wet boy. He retreats into his man cave and immerses himself in a fantasy world (whether it's games with the guys, anime, stumbling websites, etc.) partly because he just doesn't like seeing me sick all of the time. Who does? I reframed the question for myself, trying to imagine Drogo in my place and mine in his, and I can honestly say that I have zero confidence that I would not immediately do the same. I would hate to see Drogo sick day in and day out, being helpless to do a damn thing about it, and feeling like a big and clumsy oaf if I try to help him with day to day tasks. No, I completely understand why he does as he does, or at least well enough, but that doesn't lessen the sting or sort out the snarl of emotions.

I'm optimistic about the future. When he realizes there's a problem and says he's going to do something about it, he damn well does it. I don't expect to get more sex, and honestly this wasn't a ploy for more. If I can't get it without resorting to cheap parlor tricks and frosted glass bottles, then I can do without. I'm just really happy that he understands that this is a big deal for me and wants to make it better. I love that man. Oh, and he says that he loves me "lots and lots" :)

**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**

I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.

The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.

The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.

The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.

The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.

In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.

The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.

The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.

So I've been having a hard time lately. A really hard time. Emotionally, physically, financially… you name it, it's been tough.

I've been really struggling with this feeling of emptiness inside me that I've named Loneliness. Rather than try to explain myself aaaaaall over again, I'm going to copy and paste a conversation I had with some friends on Facebook today.

 

• Joan Kelley You having a bad day?

  15 hours ago · Like
• 

  Cassandra Russom Bad couple of months.

  11 hours ago · Like
• 

  Joan Kelley I'm sorry. I can't tell you it will get better. I can tell you that you will come to terms with it and reach peace. But you have to morn your losses and that's hard to do when they're still happening. Gentle hugs.

  10 hours ago · Unlike · 1
• 

  Cassandra Russom It's not that… grieving I can do. I'm no stranger to grief, sorrow, anger, etc. It's the loneliness, the reaching out to find no one there, the abandonment and sorrow I feel when I look around and see no one, and the anguish at knowing my husband is purposefully distancing himself because that is the only way he know how to cope with seeing his only love in pain.
  
  Everyone has their lives, and they are living them, and I'm left behind in the dust because I cannot move. I'm forgotten, frozen in time and stranded in place by my pain and sickness. No one has time for the cripple. Everyone has lives, issues, problems, plans… and I don't fit in anywhere. I'm all alone...

  8 hours ago · Like
• 

  Cassandra Russom I've ALWAYS had friends. I've always been independent. This is such a first for me, I can't even comprehend how to deal with it. I actually got on here the other day, bit my lip and ducked my head, bared my heart and asked for help… and got mostly crickets. That hurt so bad… I still cry about that if I think about it for more than a split second. I appreciate those who did respond to my cry for help, but it wasn't enough, wasn't right, wasn't what I was looking for or what I needed. So I continue on, empty and lonely and just… lost, I guess.

  8 hours ago · Like
• 

  Joan Kelley Self pity, Cassie? You're braver than that. Flannery O'Connor had lupus and wrote best selling novels from her bed. You are not being left behind by life or your friends. Your life is what you make it, and you can make it something even from your bed. As one writer to another, I'll tell you I am working on a novel. I've had one book published. It didn't do so great, but it's a damn good book and if I go tomorrow, I'll know I've made my mark on the world in one small way. Come on, girl. Up by those boot straps! I know you have passion in you. Find it.

  7 hours ago · Like
• 

  Cassandra Russom Dude, I just want people to fucking care about me. What's wrong with that? And I think I've earned some self-pity time after being so damn brave so long through so much. I'm like, never grumpy and I'm always happy and cheerful… what kind of sick freak deals with this kind of pain and isn't a raving bitch? Anyway, the self pity party mood will pass, even though the deep craving for connection won't. I've been growing hollower and hollower over the past 2 months… I know I can keep going. I know I will. I know I'm still a badass and I will make my mark on the world, as you say. But… I just want a little comfort, someone to hold my hand and warm my heart while I kick ass.

  7 hours ago · Like
• 

  Rose Suntken I'm sorry you aren't feeling connected, that people are distancing themselves from you. Everyday that you survive the despair you make a mark. Every moment. You are important and though you may not feel loved right now, you are, very deeply.

  7 hours ago · Unlike · 1
• 

  Joan Kelley Cassie. I've been offering a connection almost since I first saw you on the fb site. Maybe the friendship I offer is not what you want and that's OK. And yes you've earned self pity but it does you no good. It is not your friend. And I know when you're ready, you'll leave it behind. But you don't have to be cheerful all the time although that's one of the things I admire about you. Lots of us care about you. Admire you. And would comfort you if allowed. Ate you site it's all us ignoring you? Maybe there's a little bit of you pushing us away? You're not going to come up with 2 dozen close loving friends. You'll be lucky to count them on one hand. But they're there. Waiting on you.

  5 hours ago · Unlike · 2
• 

  Summer Dawn Johnston Believe me, if I were closer, you wouldn't be able to get rid of me!!! I think of you every day and I know Facebook on my phone doesn't like me, so if I miss a post, tag my ass or message me! I'll be more than happy to help on any way I can!!!!!! 

  5 hours ago · Unlike · 1
• 

  Cassandra Russom Joan, I know you have. I'm not spurning that in any way, believe me. I think it's the lack of physical, concrete friendships that I'm mourning. I don't have any good friends HERE, Corey is gone all day, I'm forced to stay home b/c sickness, blah blah blah. I value the friendships I have here online more than I ever thought I would, especially when I'm not in a funk! lol. Are you sure I am not going to come up with 2 dozen close loving friends? Cause that'd be pretty rad. I dunno. I dunno what I'm really asking for, needing. I just… I just want my mommy? I don't know! I just know that there's a big hollow place inside of me that's all sad and empty and I feel all alone and lonely and I don't know why or how to fix it and I'm just so SAAAAAAAAAD!

  3 hours ago · Like

Melanie Collins Pennock The only constant in life is change. Things will not stay as they are. Believe me when I tell you I understand. Friends and family leave when someone is Chronically ill. For many reasons. We are the reminders that it could happen to them. We cannot do the things we used to, eventually those people drop from your life. If I still lived where I grew up, I would have friends from the past. Here, my friends were mainly from work. They went away. I am alone almost all day, mostly. I actually enjoy it. Everyone finds their new normal. You are going through a great loss. The loss of yourself.......but a new self will appear. What is needed now is letting go and patience. Hahaha! Very hard. Think of this time as a learning time. You are laying fallow, like a field in winter. Eventually you will bloom! 

3 hours ago · Unlike · 1

I dunno. I'm like, really mourning… grieving. Grieving for my lost life, my lost friends, my lost self… I just want someone to come in and really, really care for me. I want to be nurtured. I want to be pampered. I want to be babied and taken care of and just… just… have love poured into me and surrounding me like a cocoon, like a womb, where I can just rest and be safe and happy, just for a little while.

I feel empty. Empty and worn out and worn down and tired, so tired of hurting all the time and feeling so sick all the time and when I say all the time I mean every waking moment. There is no break. Some people with fibro or chronic illnesses speak of "flare days" when things are bad, but otherwise sort of getting along in a fashion. I don't know what that's like. I have "normal", which sucks, and every waking moment is pain and nausea and fatigue, but then I also have "flare". That is living hell. It hurts to breathe, hurts to shift an inch, I want to vomit up my insides and claw out my eyes and my brain and peel my skin off and just curl into a ball and burst into flames and burn away into charred ash and just die. I can't eat, I can't sleep, I can't do anything but lay there moaning and staring at the wall or ceiling or whatever, depending on which way I happen to be laying.

I'm sick of this. My pain doc (whom I adore, by the way, and totally respect, and she is my favorite doc ever) is certain that she can help me improve. I want to believe her with all my heart, but I'm also sick of the utter devastation and heartbreak that comes with hoping for improvement or good news with this stupid disease and then having that hope shattered, like a plate glass window being smashed over my head. I stagger, I fall to my knees, I am cut and bleeding, and the doctor walks away like it's nothing.

I just don't know what to do about this emptiness, this longing. It's consuming me. It's killing me. I'm crying frequently and I hate it. I just want someone to love me! Why won't someone love me? Where did everyone go? Why am I all alone? Why am I home alone all day with just cats and movies for company?

More than that… why is my life this way at all?

Why me?!????

Talking with my pain doc at my appointment the other day, she asked me what I had majored in because I really impressed her with a chart that I made and brought her to describe the various symptoms that make up "sick" that goes along with the constant chronic severe pain. I told her I got sick before I could finish my massage therapy course, but I really wanted to go for neurobiology. She said that I should, because I'd be good at it, and I agree. I'd make an awesome neurobiologist, and she's not the first medical professional or scientist or other professional to say so. I am very intelligent. I have a sharp mind, a way with words, a keen understanding and intuition of how data translates to practical application… plus I love the challenge of working with the brain. I just… I have so much potential, and now I'm trapped, stagnating, forced into a living grave by this stupid malfunctioning body. I could be an incredibly productive member of society! I was an incredibly productive member of society. What the fuck?! Why not G, my abuser? Why not my very first abuser? Grampa told me on the trip up to the big city that he had spoken with the social workers when I was taken into foster care after being rescued from that situation, and they told him that all of the red flags were very clearly displayed in the situation. He was grooming me for sexual abuse in the midst of all the physical torture he put me through.

This is a two year old girl. That is how old I was. There is nothing sexual about a two year old girl. I am just… devastated. Angry. …Angry. And devastated. Is there just a huge neon sign above my head that says "Hit me! Rape me! Fuck with my mind and emotions!"? Seems to be.

I just have so many emotions swirling in me right now, and yet there is still that huge hole. I think it must look something like this inside me right now… (Just don't expect the TARDIS or John Crichton to pop out the other end. That would, admittedly, be cool though.)

Well, given that I've got so much time alone, I suppose I could take time to feel through all these feels and actually process through this stuff. I've really not dealt with any of my feelings regarding fibromyalgia. I've just kind of stuffed it all away. It's been too intense to deal with. Maybe it's all just coming out now, and now's the time to face it.

I bought a book off Amazon recently, and it just arrived tonight. (Talk about timing, eh?)

I think reading through this book and doing the little exercises he has in there will help me process through my own journey. I really do. So… I guess I've assigned myself some homework, something to practically address the Loneliness Hole. At least, I hope it will help. Good grief, I'm so glad I have this blog to word-vomit into. Can you imagine if I tried to keep all this inside? I'd explode!!

That's all for now. I've got a raging headache and my body is killing me. It's telling me that the weather is changing, and also that it hates me. Hah. Maybe I'll take a soak before falling asleep. Lucky me, I've got muscle relaxers now, so I can actually drug myself into oblivion. I'm so happy! Now, to exercise self control and not abuse the privilege… but it's soooo tempting… Oh, did I mention that my neon pain doc has me walking 10-15 minutes a day, and making a calendar to record my exercise habits? I'm naming the calendar The Pit of Despair and decorating it with "pain quotes" from The Princess Bride. The header is, "So it's to be torture, then? I can cope with torture." Week one says, "Life is pain, Highness. Anyone who says differently is selling something." Week two is, "You mock my pain! Never do it again. I died that day." Week three says, "Do you hear that? That is the sound of ultimate suffering." Week four says, "I've just sucked one *month* of your life away. Tell me, how do you feel?" She's gonna love it. I told her that she was gonna kill me. She laughed and told me I could do it. I also failed one of the strength tests because I was distracted by thinking about punching her and then deciding not to do it. When I told her she gave me a fist bump and told me I had great self control, so I passed that test. She's awesome.

Okay. On to the soak, then off to bed. I've talked enough for one night. If you've hung around this long… you're either bored, a true friend, inordinately interested in my inner workings (maybe you should consider neuropsychology, or just psychology?), or plotting to kill me. Well, whatevs. It'll be an adventure, whichever one it is. (At least there were pictures, right?) Good night!