Category Archives: FM/CFS

Fibro: The Next Step

As of today, I am officially back on the medication for my fibro. I’ve been off it for about five years now, having stopped taking it after a year so we could try for another baby. (When it looked like that was a strike-out I went back to the doctor and said, “I cannot deal with the pain and physical fatigue any more, and it looks like the second baby isn’t going to happen, so I need to start taking it again even though I don’t want to.” I took it for three weeks and then ta-da, baby conceived, so I stopped again; it didn’t even really get properly underway that time.)

Somewhat ironically, over the past couple of days I’ve felt the best I have in about three months. But my appointment with the doctor was scheduled for today, so in I drove through stupid traffic (an accident on the highway meant I was late and Owlet was fit to be tied after being stuck in the car for an hour and twenty minutes). And it went like this:

    Me: So these are my symptoms. I think the fibro is making a comeback.

    Dr: Good grief, if it’s this bad, why didn’t you come to me sooner? It’s a chronic illness. How much Tylenol are you taking a day? And periods of using melatonin to knock yourself out and sleep deeply enough?

    Me: Um.

    Dr: It seems silly to suffer when we have a therapy that worked in the past, doesn’t it?

    Me: Well, um… yes? I guess I’m just… stubborn? About taking medication and… other things like admitting it’s bad enough that I need to do something?

    Dr: Well, let’s move past that and improve your life quality again, shall we? You’ll feel a lot better on several levels, including mood and outlook above and beyond the physical benefits of less pain and fatigue both muscular and mental, and you can stop beating yourself up.

I am so, so thankful that my new GP is just as supportive and open-minded as my old one. And apparently also knows me really well already. Heh.

This afternoon, Owlet and I have an appointment at her new daycare. It turns out it’s starting operations in two months, so she’ll be starting there the first week of August. I’m excited for her; I know she’ll love it. And it overlaps with a week or so of Sparky’s summer day camp, so he and I will be able to have a couple of hours in the afternoon together alone, which I know he’ll appreciate. We do have some work to do first, though; toilet training needs to formally start this summer, as does Operation Phase Out the Soother.

I owe the blog a post on my spinning and dyeing. Maybe tomorrow. Or next week. My swap partner seems to love the package I sent her, which had some lovely dyed fibre in it, so I’ll show that off, too.

Quiet

I’m being very quiet these days, because I’m exhausted.

I remember this. It’s what the beginning of fibro felt like. The kind of zoning out, the physical exhaustion, the inability to hold a thought in my head past a certain period of time. I’m irritable as a result of all of this. I have a constant low-grade headache, and my body is starting to hurt again. I’m not sure how to relax, because a lot of my time is just spent sitting there, trying to interact with my children or fold laundry, and not getting very far. I’ve forgotten how to enjoy myself again, because it’s kind of a weary triumph when I just get through doing the regular stuff. I wonder if I need to try to start the “yay me I accomplished these things today” posts again. It would serve to get me journaling more often, and to show me that I am accomplishing things, even when it doesn’t feel like it. I need to consciously start implementing my fibro-coping mechanisms again, starting with my expectations and limits for my daily activity.

I’ve had time off from work, thank goodness. After a crazy few months, I’ve had a couple of weeks of evenings and naps to myself, and I’m so grateful. I don’t know how I’d handle it otherwise.

I’m reading a bit every day, which is nice. I’m almost finished Guy Gavriel Kay’s new River of Stars, and as usual, I don’t know how I feel about it. Kay has vaguely frustrated me a bit over the past few books for reasons I can’t pinpoint, and every time I read one I decide it will be my last… then every time I read an excerpt of the next one and the poetic prose just sucks me in. I disliked the Sarantine Mosaic duology when it came out, but now I think it’s my favourite of all his works. Funny how one’s opinions change.

I’m sending a box of handmade projects to a swap partner from my mums’ group today, and working on that has been lovely. I can’t say any more than that until she’s received it, but I pushed some of my boundaries and skills making the items, and explored new techniques, and I’m pleased with it. Even with the last-minute wibbling about one project, redoing it, and deciding in the end to send the first version after all.

I finally got around to making an appointment to drop in at the local spinning and weaving studio that’s been open for over two years, and it was glorious. Oh my goodness, I will never have to shop online again! There were shelves and shelves of silks, cottons, flax, wools of all sorts, and luxury fibres like yak, camel, and alpaca, which I’d never touched on their own, only as blends. She has two full-size floor looms set up, six wheels, and lots of swifts and rigid heddle looms and carders all over the place. There were cones and cones of cones of weaving yarn, dyes, spindles… I wanted to move in. I could have easily spent so much more than I did. She was so patient with Owlet, too, who wanted to touch all the things. Especially the packets of ginned and dyed cotton that she kept picking up and squishing, saying “skish, skish,” and the huge skeins of handspun she picked up and cuddled, saying “soft, soft.”

We actually had to go two days in a row, because I’d forgotten to take money out of the bank to pay for my order the first day, so we went back. Owlet stopped at every dandelion plant along the sidewalk and yanked off the flower tops, then gave them all to the woman who runs the studio. And she told me she hosts a spin-in once a month on a Sunday, and invited me! Unfortunately, the next one isn on a group cello class day, so I’ll have to wait for the next one.

Owlet is great, Sparky is great (he has a school concert tomorrow afternoon, and I hope everything works out; HRH’s parents are coming to stay with Owlet so I can attend, and then I think there should be a Mama-Sparky treat afterward), I have a new-to-me spinning upright wheel that was a crazy good deal (thank you, enormous tax refund allowing me to give myself a little treat amid paying debts) and HRH has a new-to-him iPhone that we’re trying to set up (ditto the treat, but grr, technology and things not talking to other things). We are a single-cat household for the first time in… well, ever, actually, since I had to take Cricket in to the vet to be euthanised two weeks ago. She’d stopped eating and drinking, and you could almost see through her; it was just time.

That’s about it. Trudging along.

Away Time

I am swamped with work and countdown to this weekend’s recital, so I haven’t been here and won’t really be for the next week, either. I’m late on my Books Read in May roundup, and that has to wait, too. Short form:

– Lovely weather, but as is expected the humidity rising, so there are good days and bad days.

– The boy turns six on Saturday, and has a school field trip to a local national park for frog and butterfly exploration on Friday. They had caterpillars in class to observe in the latter half of May, and the kids saw them make chrysalises and hatch into beautiful Painted Lady butterflies, which the class released last week. Very exciting.

– The boy finally realised what playing in a recital meant at his lesson last Saturday, and there were some tears because it would be different from his usual environments of lessons and home practice. His teacher worked with him sensitively and they changed his piece to a duet with her; we also scheduled him to be second, so he isn’t playing first and alone.

– Owlet is doing fine, and passed her brother’s gestational record of 31w2d this past weekend. Go Owlet! I am exhausted and in pain a lot of the time, which isn’t a surprise considering the stupid amount of growth that was accomplished in a very short time on top of my pre-existing fibro and scoliosis issues.

– Also this weekend, there were suddenly a half-flight of stairs, a landing, and a big hole in the ceiling to the attic. Next up: Plywood floor, framing walls, vapour barrier and ventilation layer, lifting insulation, plasterboard. Windows have to be installed in there somewhere, and wiring run to be certified by an electrician.

– Did I mention I am swamped with work? I handed in the copyediting gig, but now it is all bird book rewrites all the time, and I am having panic attacks at the amount of work that needs to be done by Friday night. Technically I have to hand it in on Monday morning at 8 or 9 AM, but I won’t be able to work on it all weekend because of dress rehearsal, guests, birthday party, and recital, so Friday’s the deadline.

– We have a lead on a secondhand 1/8 cello for the boy at an insanely low price. It’s in Ottawa, so we’ll trundle down there for a day trip the last week of June and check it out, as well as visiting the redone Museum of Nature and walking through the Parliament buildings. Even if it needs new strings and a bow rehair (both of which I fully expect) it will still be less expensive than the other secondhand one listed here in Montreal.

Right; back into the fray. Wish me sanity and an even head.

Light Bed Rest: First Impressions

1. Everyone panics. It is amusing, then not so amusing to explain the “no, neither I nor the baby are currently in medical danger, this is a preventative thing” over and over.

2. Everyone offers to come by to entertain me or somehow make things easier, because I must be bored or unable to handle household stuff. I am someone who suffers from social stress, so again, this is amusing on one level, not so amusing on another because I have to keep turning people down. This social stress is partly an introvert thing, partly a fibro thing: dealing with people takes energy, something I have in short supply on a normal basis. (Jan calls this kind of social energy “teaspoons,” a variant on the spoon theory allegory of spoons representing the finite amount of available energy to someone with FM/CFS. I love the term; it combines the idea of social interaction with the basic allegory.) Also, I’ve got lots to keep me busy, namely work, which for various reasons like finances and deadlines can’t be dropped. And household stuff is already minimised.

3. Lying in bed/on the chesterfield is dull. Luckily, as Paze pointed out, most of my hobbies are rest-compatible: reading, spinning, knitting, and eventually weaving (although that last one is actually the most intensive of them all, and I will have to break it down to very basic, brief units). And there’s always work, which has never been an issue, because I don’t commute and make my own hours.

4. I am actually capable of getting myself drinks, snacks, making meals, doing light laundry, walking to the corner to meet the boy’s bus, brief cello sessions, and so forth. It’s not like when they chained me to an IV stand at the hospital last time and told me I couldn’t get out of bed for two months after stopping labour halfway through the process. By prescribing light bed rest, my doctor is looking to further reduce the amount of energy I’m expending in order to shunt as much as possible to the Owlet. What I am not allowed to do is go out and do, well, most stuff. Orchestra will be on a week-to-week basis, and I will be taking Wednesdays extra easy to save up energy for it. HRH will be driving the boy and I to cello lessons, which is ideal, because driving is one of the things that totally drains my energy and stresses me when I have two cello lessons back to back at which to pay attention.

5. After bbqing and watching kids run about yesterday with friends, which was very pleasant, I put myself on 24 hours of full bed rest to recover, because things were getting twingy at the end of the day. In bed at six o’clock! Awake at three o’clock, because my body said, “Well, we’ve been in bed for nine hours, that’s normal, so it must be time to get up!” Just for the record, body, that is not on. The 24 hours of full bed rest today was, alas, down(up?)graded to light rest again, though, because poor HRH got violently ill in the wee smas, with what I suspect is an HRH-sized version of the 24-hour tummy bug the poor boy had on Saturday. So I was up with the boy this morning after all and handling all of the morning stuff instead of the half I usually do.

All in all I’m doing very well so far. The clinic called me to go in to pick up two prescriptions and a requisition form for follow-up tests in two weeks the day after my last hospital appointment, which was ironic seeing as how it’s a 45-minute trip both ways and they obviously hadn’t yet gotten the news that I was on light bed rest. It can take a few days for info to trickle between the hospital and the clinic, I have discovered. This should no longer be a problem as I’m being followed at the hospital from hereon, though. Which means, alas, no more free clinic wi-fi while I wait hours past my appointment time. Sigh.

Picking Up

The first couple of days after driving toward a major book deadline are always odd. There’s a simultaneous sense of complete freedom after a number of months, but also of fatigue and the inability to focus on much at all. And then there’s the weirdness of trying to settle back into a regular life again after being deadline-focused and working overtime for a while.

Yesterday I handled e-mail and stuff, and let the copyediting team know I was available again after delivering the long-term project that had taken me off the roster. I cleaned up my desk and shelved the stack of bird books that I’d had next to me for reference throughout the writing of the book. I made bread. I read some more of the new Charles Todd book, A Lonely Death. I napped out of necessity. I spun some more of the Wensleydale I got in my three-month subscription to Northbound Knitting’s fibre club last fall. (I think I’m making a heavy laceweight single, because it’s very pretty as-is and I don’t want to halve its yardage by plying it with itself.) I’m glad I have a fibre stash, because I’m certainly not buying anything new for a long time what with finances being very, very tight for the next six to eight weeks as we are a single-income household now until I receive my cheque for delivering the book. (I am seriously glad the welcome tax finally landed, because the huge chunk of money I had set aside for it was starting to get impatient, but my presently-empty bank account is sad and lonely now.)

I was supposed to go in to the blood lab at the hospital today for my second round of blood tests and the oh-so-exciting-sounding-but-actually-boring glucose challenge test, but I came home early from orchestra last night after experiencing a couple of dizzy spells. I figure fasting and then driving through rush hour morning traffic for a blood draw after a set of dizzy spells might not be the best thing right now, so I’ve pushed that to Monday. (Huh. I just checked the website, and apparently the blood lab is open till 3:00 now instead of 11:00, and I could have sworn it was only open Monday through Thursday but the site says nothing about that.) It was also up in the air because the boy woke up with an asthma attack yesterday and a nasty cold announcing its presence, and by dinner last night he had no appetite and a fever of 100.5, so he might have been staying home today. He woke up with just the cold, though, and was bright-eyed and bushy-tailed so I sent him off to school after a dose of decongestant.

Today, gentle readers, is tax stuff. Yes, we are late, for only the second time ever (ironically, the last time was also when we were expecting a baby) because I had so much work to do in the past two months that I couldn’t spare any to sort out all my freelancer stuff and make lists. Today I pull out my folder of receipts etcetera and make piles of different categories to add up, check up on much we paid in utilities, and make that list of questions to ask our most excellent tax guy. There are a tonne of unknowns this year, you see. We bought a house, and I have no idea what that does to my freelancer claims (do I claim part of the mortgage payments the way I claimed part of our rent? what about city taxes?), or what proof we need to claim first-time homebuyer stuff, or even what we can write off or what tax rebates are available to new homeowners. This year is really complicated. And no, despite the Canada Action Plan ads, there’s not a hell of a lot of info available online either federally or provincially regarding it; this is why we have a Most Excellent Tax Guy who knows all this stuff and can tell us about it. To each his or her own area of expertise!

So there you have it. I have said it on the Internet, and so it must be true: Today is devoted to tax stuff. There’s other stuff I have to do, like update my pro site with info about the upcoming book and the Gaia Gathering conference I’m speaking at this month, but I’m going to let that slide till tomorrow because I’m really tired. If I can accomplish one major thing a day for the next few days, I think I’m good. In the last week before deadline I borrowed energy from future days, something fibro folk do out of necessity sometimes, but the penalty is always a long recovery.

I think I shall sort the receipts and bills, then nap, then add them up. Doing both in a row without a rest is just asking for horrendous errors. And I ought to eat lunch in there, too.

In Which She Thinks About Pregnancy Stuff

There are some thoughts I need to write out about this, because I’m trying to work out how I feel.

A couple of people have asked if we announced the pregnancy when we did because we couldn’t hide it any longer. This amuses me. People, I have been wearing maternity clothes since Christmas. That’s three months earlier than last time. I am built like a stick; my body shape starting changing pretty early this time round. Granted, my winter sweaters are loose and bulky, but I didn’t go out of my way to swath myself in disguises or anything, and I went out threeish times a week to mingle with the masses, so I wasn’t holing up at home to avoid being noticed. No, we announced it when we did because we finally had good news from the doctors about the health of the baby. (It occurs to me that people aren’t noticing as much as they might because of my initial body shape: I have a very short waist, so I’m basically ribcage/baby right now, and that’s not as noticeable as it might be if there were another four inches of space between the two.)

Long-time readers will remember that we didn’t publicly announce our first pregnancy at all via the Internet; we told people in person as we met them. This resulted in some people being told that we had a baby before they knew I was pregnant, thanks to the boy arriving two months early. But one of the reasons I didn’t share the news last time was because I didn’t want to be treated any differently. I was curious to see if our approach to sharing the news this time would support my previous suspicion. Sure enough, now that they know, there are people automatically assuming that I am differently-abled in some way because I’m pregnant. I am the same person the world has been dealing with for the past five months. Nothing has changed. In the interest of full disclosure, I am a bit slower getting in and out of chairs, cars, and bed, but that’s about it.

I find this fascinating, as well as exasperating. I can explain fibro till the cows come home, and although people say they think they get it, it’s a hazy, vague understanding. But tell someone I’m pregnant, and they jump to the assumption that I must be exhausted, my back must ache, I must feel sick all the time, and so forth. That’s how I feel the majority of the time thanks to fibro. Pregnancy was and is a breeze for me, possibly because I’m used to this sort of thing. (In fact, I feel better fibro-wise now that I’m pregnant. Go figure. This is not a serious option for long-term fibro treatment, though, people; we’re stopping here at two kids!)

I guess what it comes down to is familiarity. Everyone knows someone who is/has been pregnant, so they have some level of direct experience with it. Millions of women do this; we have a cultural perception of pregnancy and what it does to someone. Fibro? Not so much. There’s a reason why a lot of FM/CFS sufferers default to an explanation such as “It’s like I have the flu all the time”: it’s a common experience people can draw on to get some idea of what you must be going through. That cultural perception of pregnancy isn’t universally applicable, though, and that’s what drives me crazy. The experience is not one size fits all; everyone’s pregnancy is different, affects them differently, and impacts them differently. I appreciate the fact that people are upping their solicitousness and concern, but it kind of frustrates me that I’m being placed in a box marked “Pregnant” along with the general assumptions that rattle around inside it. We all pigeonhole people and situations, myself included — it’s human nature, and it helps us deal with things efficiently — but as often as I can, I try to evaluate every new situation and individual, and not default to assumptions. It just feels weird to have people dismiss fibro because they don’t have experience with it, and overemphasize pregnancy for me.

Okay, enough of that. Here’s something wacky.

Last fall I figured it was about time to get my eyes checked again. It has been about five years since my prescription changed, twoish since I started wearing my glasses full-time, so I was due. As usual, I procrastinated, so I got pregnant before I went in for a checkup. And then it was Christmas, and there was travelling and other family health issues, and it fell off my to-do list. My eyes started acting up in about January, and I remembered that I really ought to make that appointment with the optometrist.

And then I paused. What if it wasn’t my vision alone? What if it was the pregnancy? It isn’t unheard of for women to report major vision changes during pregnancy; there are people whose eyes have significantly improved or worsened permanently due to it.

I didn’t notice any sort of change in my first pregnancy. This one, though; whoa. I can now get away with not wearing my glasses at all most of the time. In fact, I have to take them off while driving a lot, because they make my distance viewing slightly blurrier. Reading from a book is mostly fine, depending on how tired I am, and ditto for the computer screen: I can go glasses-free earlier in the day, but as the day goes on and my eyes get tired, I have to put the glasses on again. The main problem I have discovered is that I have developed the habit of taking a pair of glasses off and putting them down if they’ve started straining my eyes, and then I can’t remember where I put them when I need them again hours later.

So in the end I think I’m glad I didn’t get that optometrist appointment before the pregnancy happened, because if I’d spent all that money on a new prescription that was just going to change anyway, possibly permanently, I would be pretty cranky. (No, HRH’s health insurance doesn’t cover eyes. Or dental, despite the atrocious amount of money he pays for it.) I’ll make an appointment for this coming fall instead.

A Happy Announcement

If you’ve been following me here or on Twitter, you know that life has been pretty bad the past few months. There have been some major health issues in the family that we’ve had to deal with. One of those directly involved me and an awful lot of hospitals for five months. Well, we are relieved to say that this particular health issue has mostly been cleared up.

In fact, the boy has an announcement for you. He’d like you to meet his baby sister:

She’ll be joining us in late July. The boy was thrilled yesterday when the doctor at the ultrasound told him that he was indeed getting exactly the kind of baby he’d ordered.

For the past five months we’ve been struggling with some uncertainties. First of all, it took us ages to conceive again, as those of you who can do math and know that the boy is about to turn six have no doubt noticed. When we finally did conceive, we decided to be prudent and wait out the first trimester, as we’ve had our hopes raised and crushed before. My OB, after looking at my history and physical health, recommended that we skip the usual first round of screenings and go directly to the amniocentesis, as she was sending me for the amnio come what may and the first round of results (usually inconclusive for someone of my age) would just tell us to move on to the amnio anyway. So we decided to wait until we had those results back before we shared the news.

Except the results that came back were, frankly, scary, and confirmed our decision not to share the news of our pregnancy right off the bat. And the results weren’t false positives, either. There was some sort of genetic aberration that didn’t match any of the main things they test for. And so, HRH and I had to scramble and go for more tests so they could do a genetic profile for each of us to see if we’d passed something odd along to the baby. At this point we were betting on superpowers, figuring that they’d isolated the mutant X-factor gene if it wasn’t one of the immediately identifiable defects they test for. But even after the genetic profiles had been compared the results were kind of weird, so today HRH and I went in for a session of genetic counselling where they spread a bunch of papers and charts out on a table for us and walked us through the results and what they might mean. Those results told us that there is a high, high chance that our baby will be perfectly fine, which was the answer we’d been looking for. But there was still that… weirdness.

It turns out that HRH is perfectly normal. (You have to know he was slightly disappointed.) I, on the other hand, am a genetic freak in the nicest kind of way. Because of the genetic profiling of the parental DNA, they discovered that I have the same genetic aberration that my daughter does, only more of it. Now, this was actually very good news, because we (meaning all of us here plus the medical community) consider me pretty normal, so chances are stupendously good our daughter will be, too. There’s one last test that we submitted blood for today (I tell you, I have given more blood in the past six weeks than I did in the entire previous decade) that will wring the last possible bit of information from the baby’s chromosomal oddity, and give us every chance to be prepared for what it might indicate.

This has, to say the least, been very stressful. I am lucky in that I had a couple of people to listen to me wring my hands when I needed to and basically grump at them about how frustrating it was to have been held back for over two extra months from being able to share this news with confidence. We haven’t been able to fully relax and enjoy this pregnancy because there has always been the uncertainty about the baby’s development and health. There were some pretty horrific scenarios that we had to talk through and make provisional decisions about, scenarios, I am glad to say, that have not come to pass. We are thrilled to be finally able to share this news, and to be happy about our growing family. And honestly, we’d make the same decisions again about not sharing the news until we were as secure as possible about the baby’s health.

The boy is pretty happy, too.

I am still considered a high-risk pregnancy for various reasons and being treated for such, which is frustrating because I feel great. (Mind you, I felt great in the last pregnancy, too, until, well, it ended in a baby two months early.) At least I haven’t been put on bed rest, although it came close until my doctor realised that I work at home, so we’ve dodged that bullet for now. In fact, while we were worried about how my fibro would impact a pregnancy, we have discovered that it has actually eased some of the fibro symptoms. So no, I was not thoroughly exhausted this winter because I was pregnant; the pregnancy actually allowed me to sleep, something that doesn’t happen well normally, and seems to have somewhat eased the muscular exhaustion issue I deal with on a daily basis. Energy levels and mental fog were at a normal fibro low this winter, not made any worse.

There. That’s about all the news we’ve got for you. We hope you’re as thrilled as we all are.