I’ve discovered that getting “BETTER” with fibromyalgia is more relative than I had ever realized. Not in the day-to-day sense, but in the comparison of a set of months (e.g., “Summer”) with a similar time span a year or two or three ago.

I thought I was cured last summer. Other than the migraine headaches and lingering ECT side-effects, I thought I was completely cured. It didn’t take long to realize that, as short-term memory began to solidify and stress sharply increased that I was no longer cured. I just was feeling improved because I was getting plenty of sleep and had very little to stress about (primarily because I couldn’t remember one new stressor from one hour to the next).

I thought I was on the road to recovery this past May and would be all better within a year. I’m suddenly realizing something I’ve tried to explain to parents, teachers, administrators, and students for years: accommodations can make a world of difference, but there are still unpleasant parts of having a disability that you have to cope with and, if possible, work to remediate.

More to the point, I discovered and implemented accommodations for my disability and they have been successful in helping me to live with fibromyalgia, but I still have fibromyalgia:

• I found a way to work in short bursts on my own unique schedule through specialized tutoring (math for kids with special needs).
• I also work to get enough sleep.
• I rest between activities and stay hydrated.
• I pace myself and limit my activities, no matter how “up to it” I may feel in the moment (exercise triggers endorphins and adrenaline that make me feel more energetic and less pained than I truly am).
• I found a personal trainer that is able to work with me, slowly building up ways for me to exercise fully without straining the more tender areas and adjusting depending on how I’m feeling, which strengthens my muscles and increases flexibility, which gives me a greater margin of “okay-ness” before my body begins to feel strained.

But, still, I have pain in my tendons and muscles, as well as paresthesia, allodynia, and hypersensitivity to sound or light. I need at least 10 hrs to sleep a night so that I might have gotten a full 4-consecutive-hrs sleep cycle, as well as rest those other 6 hrs. I take at least one [7.5/300 mg] hydrocodone nearly every day and, when on vacation, possibly more (or other things) to keep me functional and pleasant when I find myself in pain and getting very crabby.

But, worst of all, I have not yet managed to have a full week (a week in which I am scheduled to do something every day) in which I do not miss one appointment or another.

It’s taken me a very long time to be able to say aloud that I my fibromyalgia isn’t better, I’m just getting better at having fibromyalgia. I still hope that, one day, it will get significantly better. But I’m also considering amending my “fibromyalgia is all better” barometer to be one full year of:

• Mild sensitivity to sound or light.
• Functioning on 8-10 hrs of sleep a night and sleeping at night (rather than the vampire-style 2am-to-noon)
• Using lidocaine patches as a first recourse in areas of pain/tenderness and taking one [7.5/300 mg] hydrocodone only during significant pain, at most six in a month, and using lesser drugs like tramadol.
• Missing only one appointment (or day) each month due to pain or migraines.

Which will LEAD TO being able to schedule 3 to 5 students in a day and reducing my fibro-related medications, Lyrica and Flexeril.

So, basically, I’m using a combination of accommodation and remediation, and I’m going to consider myself “ALL BETTER” once I am able to lead a relatively regular (as in regulated or predictable, not as in average) life.

Now, it’s just up to working and resting and hoping…

cross my fingers

knock on wood / klepat na dřevo / χτύπα ξύλο

Loving someone means so many things; some of it is simple and straight-forward, but much of it is complicated. Loving your obnoxious teenager, for example, can be hard (e.g., me, from 12-19 wasn’t a cakewalk for my parents). Loving your parents or siblings despite the random things they do/say or have done/said is just a soul-deep thing and I’ve realized that I can only accept who they are and love that real person and try to understand them. But there’s that you’re-a-part-of-me love deeply embedded. However, sharing your life with someone you love, a partner, a helpmate, is much harder.

When it comes to spouses, most likely, you were not raised together and you do not share ALL the same values, likes, dislikes, hopes, and dreams. Hopefully, you share most of those things, but it’s nigh impossible to share all of them. But you suck it up and compromise. It’s all about deciding how much it’s worth enduring x, y, and z to make your spouse happy, and trying to see your own benefits.

For example, my husband is not a fan of the beach, shopping, or carnivals… but that’s what our visit to Cape May (wonderfully arranged and paid for by my very loving older sister, who also paid for a hotel room so I, with my fibromyalgia, could have sanctuary from the 24-hr-a-day craziness that is two 6-yr-olds and an 8-yr-old) essentially was filled with, along with lots of time with my older siblings (my sister-in-law I count as a sibling, since she’s been in my life since I was in preschool) and niece and nephews, as well as my father. In addition to enduring something that is not his idea of a fun vacation, he paid for it with a vicious sunburn on his feet and ankles, in addition to all the driving, seasickness on the ferry, and mild sunburn on the front of his upper body. It was my idea of a spectacular vacation, but it wouldn’t have happened if it was just the two of us. However, we both love the kids, and I adore my siblings as well, and we see them so rarely that my husband agreed to come along (I told him I’d be okay going alone if he didn’t want to or feel comfortable with missing work) and partake in the family fun.

In the past week or two, I’ve discovered that a lot of our life together is compromising and making the most of it (as well as thoroughly enjoying what we do share). I’ve also come to realize that a few of the things I assumed I’d do in my life just aren’t going to happen, which makes me sad.

For example, I like to travel even to local places, sit at an outdoor restaurant or cafe and take in the local color. Just people-watch. Peter really isn’t into that. He likes activities. Our honeymoon in Athens was the kind of thing that did both, we’d visit places, go on tours, but we also had to eat and it was off-season, so I could take in the local color at a taverna. However, future vacations aren’t as easy a compromise when it’s just the two of us. But we’ll see.

One thing that won’t change is that I’m a dog person and really want the option of one day having a dog (for example, if we have a yard and our kid(s) are of an age to help out and take that responsibility on). But my husband is decidedly not a dog person and does not want a dog in our home, did not want “a dog yard” at our home back when we lived in Western NY, and just thinks cats are less bother and kids have more of a pay-off, so why get a dog (which is like a life-long 18-month-old)?

I also really want to help kids more than I have been able to do as a teacher – I always wanted to adopt or foster a set of siblings (2 or 3, most likely one of which has special needs) that found their way into “the system” and are not young enough (<2) to be instantly picked up. Or just foster/adopt a few local kids over the age of 4. Give them a life they couldn’t otherwise have had. This would have been in addition to kids I gave birth to. But my husband doesn’t like the idea of adopting, especially if we have our own kids but even if we couldn’t…

But the one thing that really, truly bothers me now is getting pregnant and raising kids of our own. I want 4 (well, at least 3 and up to 5) kids, but he wants 2 (maybe 3). In addition to that, my husband is a born child-wrangler. He just knows how to take care of them, how to be firm, how to be silly, how to engage them in a self-perpetuating game without anything interesting around to use… And he loves kids. (I also love kids and feel that we’re better equipped than most to be good parents to kids whether they’re smart or average or have special needs or have special gifts.)

I felt I was depriving him of having children of his own while he’s still young, but he told me a couple of days ago that he does not have the patience yet and has growing-up to do. He’s not yet up to the 24-hour parental lifestyle, with its unending paraphernalia, the planning that surrounds even the simplest trips, and the noise and commotion that can randomly occur when he’s just not in the mood to cope with it…  That’s his compromise to deal with my situation (I need to be well from fibromyalgia for at least a year before we’ll start trying, and closer to a healthy weight).

Meanwhile, I’ve been thinking: I’m 30. Let’s say I’m magically better enough in 6 months to start counting down a year and go off all my meds but 1 tricyclic antidepressant and the occasional 0.25mg klonipin (which frightens me and even just the hormones alone would put me under significant psychiatric watch) so we can start trying to conceive. This would make me 32 years old at the birth of baby #1. My husband wants them to be far apart, but I’m thinking they should be as close together as possible, considering the whole insufficient-and-uncomfortable-depression-meds issue (if I manage to not have to worry about postpartum depression or complications, etc.). But let’s say we wait a year, then start trying again…  baby #2 will come around my 35th birthday. That’s if we’re cutting it close and under ideal circumstances. I thought of “rushing” it, decreasing the amount of time I’m on low meds, but my OB/GYN told me she would strongly recommend against using any hormonal “instigator” (such as Clomid) to make conception faster, since hormone levels are higher (which would amplify my depression, anxiety, etc) and drastically increase the possibility of twins. She said that conceiving and carrying multiples, such as twins, exponentially increases developmental risks to the fetuses, risks to my own body, amplifies the hormone craziness, and makes post-partum depression far more likely and more severe.

So I won’t have 5 kids. I might not even have a 3rd child. And the thing with siblings is, the more you have, the more likely you are to be really close to at least 1 of them, which is what helps families stick together during the hard times. My husband may not be close to his sister, but I bet if he had 1 or 2 more siblings, there’d have been 1 he’d identified with. I have 4 living siblings and I am now close to them all, but have a different and interesting bond with each of them. I want my children to have that, too. Maybe, once I’m over 35, they’ll give me Clomid and I’ll carry twins. Or maybe, if I’ve been trying and charting for 6 cycles without success, they’ll do that. Or we’ll shell out the money for IVF if the first time or two required more than one cycle of hormones, and then I might carry twins or triplets. Or maybe we’ll have 2 kids, each of which is a handful for whatever reason, and the idea of a third would just be too much and we’ll be content being able to make do with being seated easily at restaurants and only needing one stroller. Who knows?

All I know is that I love my husband dearly and want a happy life with him, regardless of what compromises we make in order for that to happen.

I’m starting to stress out over bringing a foster dog into my home, especially after reading “Dachshunds for Dummies”.

Today, the vet said it’s very possible the cats might get very stressed out. Although Leela handled it well, I don’t know if Stewie will. But I hope so.

My baby brother thinks it’s a mistake and will drain me.

What if it’s a destructive, stubborn dog that’s hard to housebreak and barks constantly?
What if it’s a sweetheart and just needs love and understanding and patience?
What if it’s both?

What if I don’t foster a dog? I’m pretty sure I’ll go insane over this summer, being alone all day with only having my husband for company most evenings and some days on the weekend. Even the cats are upstairs asleep all day and get very irritated if I try to engage them.

But I adore my kitties (they’re my babies!) and I would never, ever wish them a moment of harm unless there were a greater good that came of it… like an uncomfortable shot, or the potential for them and a doggie having a big cuddle all together.

I also need to continue to get better, and if fostering a dog drains me too much, I won’t be ready to work  2-4 hrs every day in the fall.

Decisions! They suck.

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.