I feel pretty crummy, but I don’t know what’s wrong. I just don’t feel quite right. I had to cancel today’s appointment with my personal trainer and tomorrow’s shopping outing. I figure, if I feel this horrible with nothing tangible attached (other than a vague “creaky” feeling, which would feel better if I just exercised a little), I won’t get better overnight.

It doesn’t help that I’ve been sleeping so poorly: I can’t get comfortable enough to fall asleep at a reasonable hour (after plenty of winding down and rituals and lavender-and-chamomile scentedness), I can only sleep when I’m absolutely exhausted and, then, I keep waking up at least every hour.  Even naps have been sucking big sweaty donkey balls. My doctor suggested having a set nightly bedtime and moving to the guest room as soon as I start having trouble. I didn’t have the heart to tell him that’s where the litterbox is and it would be easier to try to convince my husband to sleep there (which we’d both hate – I cherish the 5.3 minutes of quiet talking before he is suddenly unconscious, and he cherishes the soft mattress, many pillows, and the freedom of having a boobie within arm’s reach all night).

I’m back to the level of non-conscious bodily discomfort I was at months ago, where I start feeling nauseous until I realize I have to use the bathroom and I’m having trouble maintaining my body temperature (I feel hot-cold-hot-cold-hot…).

Maybe I’m sick. Maybe it’s a UTI. Maybe I need more/better sleep. Maybe I just need some not-overly-strenuous exercise.

But right now, I’m finally feeling nauseous enough to want to use the bathroom and then make my way to bed. And poor Stewie’s finally so comfortable in my lap. Oh, well – life’s hard for a pimp-cat.

I just watched Pixar’s “Up” for the first time, again (since the 1st time was during my ECT, I remembered little more than sobbing through the beginning montage). It can’t help but make me cry – especially after this most recent flare. Let me explain.

The movie is predicated on this Great Love that lasts from childhood through old age and beyond…

When I first saw it, I probably felt two things (1) love for my husband and the hope that it would be that wonderful, and (2) guilt over having been depressed enough to be hospitalized, which I believe hurt him more than he’ll ever say, especially to me.

I still feel that horrible, gnawing guilt over the fact that I thought he, and my other loved ones, but mostly him, would be better off without me in his life, especially if it was deemed an accident, and that they all now know just how selfish I had been.

However, I now feel a second guilt: we aren’t aging together, despite being approximately the same chronological age. At 29.9, my husband is rather healthy, despite untreated allergies, and in relatively good shape while I, at 30.2, I waiver between being a seemingly competent person and a decrepit nearly-bed-ridden crone.

I’ve seen marriages crumble, or at least become very strained, when the age difference suddenly becomes significant and limiting, or one person becomes more disabled than before… The disabled individual, like me, is often humiliated by how much they can’t do (or can’t let themselves do, due to potential consequences) and feels guilty. The younger or non-disabled partner is taking on more and more responsibilities, feeling more pressure at home and work, their recreation is limited as well, and so he or she can be a bit resentful. This leads to tensions and disagreements and miscommunications, or just resentful trudging-through.

So, this time I saw “Up,” I cried because I don’t know if we can have that kind of loving, lasting partnership when I now behave like I’m more than twice his age. I feel as though my only real hope for having a happy, loving, lasting future with the man I love is losing at least 35 lbs over the next year, getting my business running, and personal-training by someone who’s had experience and success with fibromyalgia patients. It may not be true, but it certainly feels that way.

I’m finally feeling better, though. Last weekend, I was basically in bed both days, and was in increasing pain over the course of the week. However, Friday night I slept over 12 hours and then last night I slept 8 hrs and then had two 1-2 hour naps later on today. With this sleep, my skin no longer hurts and I was able to do some cleaning of the kitchen floor, with Peter’s help. Tomorrow, I have my first training appointment, Tuesday, I have a woman from the dachshund rescue coming to do a home visit before approving or denying my application, and then Wednesday, I have a former-tutee-turned-pre-teaching-college-student helping me get my tutoring room together.

This means I’m praying I can get the table down to the rec room and get the first floor and downstairs a little cleaner by the end of this long weekend, with my husband’s help, and still stay relatively low on the pain-scale. We’ll see how that goes.

I’ve been feeling very frustrated over my fibromyalgia-related limitations. This past week, my arms (or, rather, the shoulder-blades/upper-back region) have been hurting horribly and the muscles have swollen. This weekend (Sat & Sun), I did nothing. Quite literally nothing (aside from using the bathroom, brushing my teeth (electric toothbrush), and feeding myself a limited amount).  I lay in bed listening to The Girl With the Dragon Tattoo yesterday and some Neil Gaiman short stories today, sometimes propping myself up in bed and doing Kakuro (cross-sums) puzzles while I listened.

My husband spent the weekend at a “Magic: The Gathering” Grand Prix tournament just outside D.C., coming home only to sleep a few hours Saturday night and finally crash around 5pm on Sunday. He did very well Saturday (top 220 out of 1930, getting him into the 2nd day’s rounds), but the adrenaline high only lasted enough to get him home. So I haven’t seen much of him or gotten to talk to him.

Talking on the phone has been difficult, as has being on the computer, due to the amount I need to use my arms. So I haven’t been able to spend time chatting with my sister or brothers or niece & nephews or grandmother (well, technically, my husband’s grandmother, but she’s adopted me which is a wonderful warm fuzzy feeling).

I couldn’t clean the kitchen floor so local students can be invited to study here. I couldn’t put books on shelves downstairs to get the tutoring room together. Heck, I couldn’t even put dishes away and could barely refill my water bottle with the Brita. The stuff that’s left over from the renovation needs to be returned to Home Depot and Lowes, but my husband has to put it into my car. And the kitty litter, which I’d thought my husband had changed when we went and got litter on Thursday, had not been changed (and it was disgusting then – I am so, so angry)!

Someone’s going to come do a home visit to see if it’s a suitable foster-dog placement. Right now, I’m not ready to let someone into my home.

I feel let down… My husband said I could count on him to do things for me on Thursday and Friday evenings, but that wasn’t completely true, because he really was only willing to do 30 minutes worth of work, max, and if that involved going out and picking up the litter, well, then the litter would have to be changed later. My husband made it sound like I could depend on him to handle the garbage every week, but he will only take 1 trip out on Thursday morning, so if everything can’t be brought on that trip it’ll have to wait. So, when I came down on Thursday, the master bedroom garbage pail was empty (but still in the kitchen) and the cooler from eDiets and the big black garbage bag were gone, the kitchen garbage was still very very full.

It’s a horrible situation: my husband is extremely vehement that he does NOT want people coming in to help me clean even just once in specific rooms, but he is too busy and needs some down time and therefore hasn’t had time to do much cleaning, like scrub the kitchen floor or counters, or wash windows, or do the dishes last week, or just put the Home Depot stuff in my car (I can tip someone for helping me load and bring it into the store), or even go get his own Pepsi out of my car. I understand his point of view: he wakes up early, works all day, needs some time to decompress, needs some time to have fun, and needs to sleep… He’s tired and may feel put upon by all the things that need doing that I can’t share the burden of. He does something for me every day and still that never seems to be enough, I always seem to have more that I’m asking of him.

But carrying my dinner plate and a water bottle to the living room is painful – I can’t do much of anything and just keep hurting myself when I try. We’re running out of clean clothing, but he hasn’t carried any laundry down and may not always be available to carry it back up. Going to Target to get my prescriptions was difficult because I had to pick up shampoo for my husband (which was very heavy, ridiculously enough, but so was pushing a cart) and I got home in so much pain I was dizzy and nauseous.

I guess this is something we can talk about in counseling tomorrow. But I feel helpless and frustrated because I don’t feel like there’s any non-painful way to deal with the situation. No matter what, I’ll be the jerk of a bad guy. Either my husband throws himself into pitching in (maybe he doesn’t see the urgency of the school year ending, of HSA week being this coming week, of me missing important opportunities by waiting) or I’ll need his consent to get someone to come by and clean the kitchen and basement and windows, and perhaps pay a former student to help me get the tutoring room together. But I kind of hit my breaking point this weekend, forcing myself to do nothing while seeing so much to do…

On a more positive note, my husband did say it’s okay for me to buy some personal training sessions with an Elite Personal Trainer at the Columbia Athletic Club, so that someone can help me strengthen my body and arms without exacerbating the injury. So, at least there’s that.

Approximately four weeks have passed since my last post and so very much is milling around my mind to write about that I am writing this post just to recognize all that I will talk about when I can:

• The bathroom is finished. Finally. It’s beautiful and not completely moved into yet, but being fully used. It was completed Friday night, at 11pm on the 23rd, and we began to use it Sunday evening. I will be fully accustomed to it after everything has been put away for a while… so, in a month or so.

  

  

  

  
  

  

  

  

  
  

  

  

  
  
• The front of our home is no longer a jungle. Perhaps over-pruned, but I can plant at my leisure. It was a gift from my mom.
• L.A. was wonderful. We had really needed to get away from life and enjoy ourselves. I enjoyed connecting with my brother and even got to have a heart-to-heart conversation with him and find out just how very much we both have in common (poor guy). It was also wonderful getting to know Grandma Susie better and meeting Grandpa Bernie and their dog, Patsy, for the first time. Since Grandpa Bernie is extremely hard-of-hearing and is not connected to the internet, I have purchased stationery so that I can correspond with him by letter writing. Seeing my in-laws was also nice, although some comments from my husband’s sister went beyond her usual unthinkingly-self-involved zings into personally-cruel territory and I was very proud of myself for neither physically nor verbally attacking her (or even commenting on it to her). The call-her-on-it-and-get-into-a-hysterical-argument gene comes from both sides of my family on X chromosomes (and appears to only get diluted if a Y chromosome is present), as my little brother pointed out, which made me feel even prouder. Someone must have made her more aware of her need to be a little more sensitive, because she didn’t say anything rude at me after that. Overall, it was a wonderful place to visit, and I wish we could fold the globe into the 4th dimension so I could visit my adoptive grandparents and my baby brother far more often, but I would not want to live in a plastic, prop-filled world.
• I’m trying to get my business of the ground. The website is live and it has a facebook page. I have people saying they will send business my way (including the admissions director of a private school for LD students, a parent of two former students, another parent of a summer student, and the head of a local psych group). I have a now-clean rec room with attached powder room that now has matching “powder room” and “laundry room” signs so those doors can stay closed, a soon-to-be-assembled book shelf and computer desk, a printer stand/filing cabinet, a printer/copier/scanner, a soon-to-be-hooked-up computer and soon-to-be-delivered comfy waiting area furniture. A table upstairs will be brought down for tutoring purposes. The kitchen floor is now clear of boxes and junk and soon the surfaces will be too, so that I can advertise to neighbors a low-cost 3pm-5pm homework help time (to drum up business and make nice with them).
• I’m doing eDiets home-delivery to get rid of a chunk of weight. They guarantee 10 lbs in 5 weeks. In addition, I’ve joined the local gyms and pools, which was a package deal that also gives me more access to community events and activities (to shmooze and make friends). Just spending the past week preparing for the diet has had me lose 1.2 lbs.
• I want a dog. Peter does not. The best reason he has is that my health may one day improve greatly, making FT work possible, which is not conducive to dog-ownership. However, I know a dog would get me walking several times a day, every day, and we could get well or be ill together… I am hoping to foster a senior/adult dachshund. Peter thinks bringing anyone new into the household would be hard on the cats. But me being alone all day and dependent on Peter for amusement (as well as every project that I do, which all seem to involve heavy lifting to some degree) is hard on everyone. Also, doing obedience or agility or just a dog park with the dog would be another way to meet people. Since the summer is a slow time for tutors AND I’m limiting myself to 2 hrs/day of work, and I need an interactive project to keep me from obsessing over buying stuff or food or whatever else I could possibly obsess about, and I’m so incredibly lonely, I think this is the perfect solution.  So, I’m filling out long online paperwork, hoping a good match is out there and that Peter will give in if the house is clean enough and he’s getting enough of what he wants. We’ll talk about it seriously during our couple’s-counseling session Monday (along with the fact that we BOTH HATE that I am so dependent on him to do things that will enable my projects, so I don’t push, but it hurts me when he shows such disinterest in helping with getting my business started or clearing out communal space when I’ve already put a lot of work into it, but he needs some down time and relaxation time because he does work a 40-hr week, which is also why I am okay with him spending so very much time out of the house playing Magic: The Gathering with his friends, even though I am desperate for attention), and he’ll see this sometime before then so it won’t blind-side him.

So, that’s about it. A lot going on, all in a tiny span of time and all making laps around the inside of my tiny, youth-hat-sized skull.

Yes, life is frustration, and most people are dealing with frustration of some sort 24/7/365.25. But the life of someone who wants to, but doesn’t want to, and who can, but also cannot, can be especially frustrating. Especially when the whole “wanting to” part is relatively new.

I want to be a productive member of society. I want to actively be a teacher. I want to be a wife. I want to be able to get pregnant and be a mommy. Heck, I want to be able to say definitively that I will be able to do a specific activity or be at some place on a particular day and time. I want to look at the future and not see a thick grey mist of uncertain possibility, of plans that -however tenuous, or however many counter-balances are put into effect- could easily fall apart. When I was a child, the future was a bright glaring white light of potential realities all vying for my preference. As a teenager, the future a dark murky thing I wasn’t sure I was up to dealing with. In my 20s, I thought that determination and fortitude and focus could make anything happen. I’m hitting a point where I don’t believe that. I’m seeing resources as finite; my energy, my patience, my mental clarity, my physical stamina, my time, my money, all have a limit and I can see those limits.

The old me would just type in those given parameters and calculate my life and plans. The new me, the one that actually sees all the life I want to be (and look forward to one day) experiencing, keeps getting frustrated by the fluctuating nature of my limits and the consequences that I don’t foresee. For example, after helping Peter carry in some boxes two weeks ago, I still have too much pain in my fingers to be willing to frustrate myself by attempting to play my lovely, dusty, out-of-tune piano. Another example is the fact that if I go to Lowe’s and Food Lion for short-ish trips, I may be okay and it may even raise my activity tolerance if I keep it up, but if I go one extra aisle or carry one extra bag or then try to do the dishes that night… well, I’m done for a couple of days.

The trick is keeping up a very consistent, ever-so-slightly-increasing amount of activity. I see that, I understand that, but I don’t see how it is possible.

Life-activities, for example, are not exactly things that occur on a daily basis. The laundry can be done one or two loads a day, I suppose… especially the not-so-sanitary cat-enhanced laundry from months ago. I don’t go grocery shopping every single day, and I can’t go walk around stores pushing a cart and NOT buy things every other day of the week. If I drive more on one day than usual, especially in traffic, my right leg will get cramps. If I’m stressed, my neck will be stiff and possibly help trigger a migraine. Doing the dishes is very difficult, especially if there are many dishes, due to the height of the sink, my height, and the relative height of the dishwasher.

And what about weekends? The fact alone that I am intending to share my time and energy with another person changes everything…What about the fact that my IBS/meds cause me to not poo for weeks and then spend a full 24-48 hours first getting the blockage out of the way and then eventually running to the bathroom 5 minutes after I ingest anything, which causes significant muscle cramping from simple use?

And then there’s cleaning, cat-care (yes, petting my cats requires a certain amount of physical endurance), typing (less frustrating because there is a delete key and no set rhythm, yet still taxing on my fingers), keeping up with the bills, making sure that my school district and I are on the same page (although I’m certainly fine now with whatever that page winds up being), taking care of whatever my husband may need from me, keeping my mind active…

I guess I’m just thrown off by how sick my husband is and the fact that I know I’ll be trapped in the house all day for 2 weeks, once the bathroom renovation gets underway. I still have some things that need doing before that happens. I’m also leaving myself projects to do while it happens, as well.  I had plans for this weekend – very small plans, yes, but plans nonetheless – to de-junk and clean the guest room this weekend. Monday, I’d contact the contractor and set things up to start the following Monday and ask what I need to do to be ready for demolition (so clothing in the closets and the rest of the master bathroom isn’t in ruins), make an appointment at the salon(s) for mega-waxing, a facial, a partial-highlight & trim, a pedicure, and possibly a spray-tan in 2 weeks or so (it will probably take several visits to get all that done), and visit Target to get 2 new comforters for the guest room and white sheets. Instead, I’ll be gutting tomorrow and Monday and buying what bedding I can online (at least there’s a teacher discount). I may even do some dishes if my husband isn’t up to it, because we’re out of spoons and I need my yogurt.

In addition, on Monday, I’m starting a very basic, light workout program using my exercise ball (which I’ll have to inflate). I’ll start with 10 reps a day for each exercise and increase that by 5 reps every two or three days. I’ll also wear a pedometer all day every day and do either 2 loads of regular laundry or 1 load of icky laundry each day. My goal is to lose over 5 lbs in 4 weeks (starting Wednesday, March 31, when I put my diet into firm action), and be able to comfortably, easily fit into my pretty new dresses when I go a-visiting:

My New Dresses from Heartbreaker Fashions