Blurgh and some crocheting

As I said last time, the past few weeks have been rough. I'm not sure if I've been in a CFS flare, if my thyroid meds need to be adjusted, or what, but most the past month I've been dizzy to the point of greying out for no apparent reason, almost throwing up if I bent over, and exhausted - if I read a book as opposed to a bright, active computer screen I start to doze off, no matter how much sleep I've had or how recently I had been asleep.

Not as much has gotten done around the apartment as some might expect. I've done the best I can while not making myself feel intensely worse, pass out, or throw up. It's made me feel horrible and guilty and useless to not be able to do as much as I'd like, but I've tried to do a little every day, even if it isn't all that noticeable and to be gentle and kind to myself, using some of the skills mindfulness has been teaching me.

We have finally gotten our insurance cards, so I can start seeing doctors again.

This past week has been devoted to coping with and recovering from a bladder/kidney infection. I wound up going to the ER Sunday night after attempts to tough it out from Friday onward failed. I think the last time I was in that much lasting pain was when I had my spinal tap. I was going to wait until Monday and find a clinic or something, but realized I simply couldn't make it through the night with the kind of flank pain I had.

Fortunately the ER staff were nice and I've had a week of Cipro and some pain meds that I've used sparingly. While I'm grateful for the Cipro, the side-effects blow goats. It seems to cause severe headaches (though that might have been the infection) that throb with the slightest movement. Far worse than the migraines I usually have. And no response to meds.
Gut pain from the infection was a problem to the point I had trouble sleeping until recently and I get a little flare of pain again now and again that could be my kidney or could just be a grumpy ovary or a weird back spasm.
Up until today I've had major problems brain wise - lots of forgetfulness, typos, silly errors, forgotten words, dropping things, running into things.

And I've started having major pain and stiffness when I get out of bed. In the arches of my feet and the sides of my hips. What the hell? Why those specific areas? I have no idea. Cipro can do weird things to tendons and muscles, so I'm hoping this will go away when I finish taking it and isn't some new, weird permutation of some part of my sickliness. I've had more generalized weakness/pain. I don't really know how else to describe it - usually in my shoulders and hips. Holding anything up above my head, even very light things is exhausting with the edge of hurt that usually means muscle failure is imminent. Really hoping that's a Cipro thing too, but I suspect it's more a thyroid thing.

Anyway, that's the health report. I've been working through a mindfulness workbook and working on acknowledging my feelings and states of being, including pain and sickness and discomfort and anger along with happiness and joy and anticipation and letting them be. That's part of the reason for the detail here. I also hope that others reading this and going through similar things won't feel quite so alone in it.

I have finally started crafting again. I've been doing some spinning, though I've been limited by that weird shoulder pain/weakness thing.

I ordered a bunch of soap samples from Chagrin Valley Soaps. I tried them in the past and couldn't quite get the hang of the shampoo bars and had trouble keeping the soap intact. I have shorter hair now and very different water, so I'm hoping for a better result. Also hoping the soaps might help with some of my random eczema and cystic acne and seborrheic dermatitis crap. My complexion is an absolute mess at the moment and it makes me sad in addition to being uncomfortable.

To help solve the problem of keeping the soap intact, I decided to crochet some soap sacks. Pop the bar in there, use it as a combo scrubby/soap, and then hang it to dry when finished. Sweet! Just finished the first one in about 45 minutes, using Cassiemarie's Soap Saver

In other news, Google + and Google Reader are pissing me off big time. I cannot find a way to share web pages directly to Google + via a share button browser plug-in the way Facebook, Twitter, and Delicious (and many others) can.
And the new Google Reader has apparently stopped working with the "note this in Reader" bookmarklet, which would also allow you to share webpages directly without having to open a new tab and cut and paste crap.
I am unamused.

Not Dead Yet

Wow, I've been terrible about keeping up with posting. Ahem.

In my fortune cookie today

I've spent the last few weeks continuing to recover from moving. My arthritis has been problematic, but I've managed to putter around and do a few chores every day and slowly start low-grade exercise again.  Swelling in my hands and feet with too much exertion (like a few hours on my feet) and/or high temperatures has been annoying.

Tom has been up to Chicago the past few weekends and this weekend I had the car. SCORE! I completely lost my mind and had a 4-5 hour long shopping marathon with, um, pretty much no breaks. This was epically stupid. "Post-exertional malaise" is really not a sufficient description. And I managed to get so tired that I had trouble sleeping, which is among the stupidest mind-body quirks I can think of.

I did wind up with some comfy pants and leggings to go with some other new-ish clothes from eBay. My weight is still creeping up courtesy of the nortriptyline. I'm still within the healthy BMI range, but getting uncomfortably close to overweight. I've been logging meals and activity with MyFitnessPal, which does seem to help a little bit. It's not quite clear how much of the weight and bloating is weird autoimmune related fluid build up and how much is actual weight-weight. Grumble.

I had never really had to pay attention to my weight until the past year or two aside from making sure it didn't drop too much in the field on a few occasions. So this is an entirely new, weird thing trying to figure out what size I am now, what is flattering on this very new and different body, and realizing just how socialized I am/was to "skinny=good/beautiful." And stretch marks. What the hell?

Bonus fun, of course, is the uncertainty about exercise and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Some camps suggest Graded Exercise Therapy, often in combination with Cognitive Behavioral Therapy is a useful intervention to increase general function. Others suggest that even graded exercise therapy can increase oxidative stress and in other ways actually be counterproductive or even dangerous for people with CFS/ME.  I have found in general that aerobic exercise of any kind tends to be far, far more unpleasant with longer lasting after-effects than more gentle stretching, like yoga or very low level aerobic exercise like walking.

We still have not received our insurance information so I have yet to see any new doctors. I'm dreading it, actually. I hate having to recount the decline of my health and all the details around it for new people. I hate trying to figure out if a doctor is being patronizing or has decided I'm just "nuts." I hate not knowing where the line between self-advocacy and rudeness is.

In the meantime, I have been working through A Mindfulness-Based Stress Reduction Workbook I have it as a Kindle book, but it seems to no longer be available in that format. I'm enjoying it so far and finding that it is helping me recognize when I've tightened up or gotten anxious and pause to relax. It is still a challenge to do the daily meditations. I still feel obscurely guilty for taking 15 minutes to meditate when there are boxes to be unpacked or dishes to be washed or, or, or... It is at least keeping me on a fairly even path until I can begin seeing a therapist regularly again.

I also have done no crafting. For months. I can't decide on a project, I don't pick up things already started. I can't decide on a new thing to start. Hoping to remedy that this week.

Better news - some of my experiments with supplements do seem to be helping a little bit. I ran out of CoQ10 this week and seemed to feel a bit less with it until more arrived. It often seems that various treatments help in increments best detected when the treatment is skipped or removed.

We've made some progress in unpacking.

Well, some of us. Others have been grumpily hogging the heating pad.

Small Things

This week is Invisible Illness Awareness Week. My invisible illness has been smacking me around a bit, so I'm only today getting around to writing a post for it.

Oreo enjoying some sunshine and grass

Oreo (for new comers, Oreo is my 15 pound Shih Tzu/Lhasa Apso caretaker, companion, comforter, comedian, and partner in crime) was the inspiration for this post. At the moment we're staying with a friend until we move into our new place. Oreo is in the living room peering out the window and barking randomly while I'm in the bedroom nursing a migraine. Having a window he can see out of is a novelty for him, thus the barking. Usually he snuggles with me when I have headaches. He's a small thing and got me thinking about small things in a broader sense.

One of the popular tools to explain invisible, chronic illness is the Spoon Theory by Christine Miserandino. I encourage people to read the essay when they have a chance but in summary, it's a way of demonstrating how little things add up over the course of a day, a week, a month to sap the energy and wellness of many people with chronic illness, especially illness that causes fatigue. Another analogy I like is lightweight backpacking. Individual items may not seem like they take up a lot of space or weigh a lot, but the full combination can be a lot to deal with.

The small things that so many "normal" people take for granted can have big effects on us. Here are some of the small things that I used to take for granted:
- Showering. It's now something that requires me to rest for at least 15 or 20 minutes afterwards even though I use a shower chair, have very short hair, and use 2-in-1 shampoo/conditioner all in an effort to make it as efficient as possible.
- Washing dishes. Standing for extended periods often makes my lower back spasm and my neck knot up and seems to drain me of energy pretty quickly. Reynaud's disease interferes with the blood flow to my hands, fingers, feet and toes making water that is too hot or too cold physically painful. It can also make holding a cup with hot or cold beverage in it painful. Cup cozies are my new best friends.
- Doing laundry. Picking up and carrying a hamper makes my head pound and my back grumpy. Not being able to see the floor messes with my balance in a big way. Folding clothes is sometimes painful if my arthritis is flaring or I have migraine-related pain and stiffness in my neck.
- Shopping. The long walk around the store is tiring. The lighting and noise and motion is almost too much to deal with sometimes. Trying to remember what I need, even with a list is a challenge. Making a decision on which item to purchase can sometimes seem overwhelming.
- Watching TV. A migraine can sometimes make TV absolute torture. Days when my brain is foggy just makes it surreal and confusing.

But in the same way that little things can add up to make me feel worse, they can also add up to make me feel a bit better.
- Oreo is a little thing who can almost always make me smile, if only for a little bit.
- Hugs or commiseration or understanding from friends and family.
- A good book.
- Silly things on the internet
- Sweet, thoughtful things from my husband like a candy I particularly like or special snuggles.
- Meditation.
- Gentle stretching or yoga that helps keep me moving and helps with some pain.
- Satisfaction with small victories like showering or doing the dishes.
- Creature comfort things like a favorite body oil or a comfy hoody or a nice skein of yarn or wonderful fiber to spin.

Driving

Image via WikipediaOne of the things we're excited about with the move to Mississippi is that I might be able to drive again. I quit driving about 3 years ago when my health had taken a pretty significant downturn. I was having major problems with balance and depth perception.  I felt foggy and sort of disconnected a lot of the time. I was having pretty significant involuntary movements that would probably be really bad to have while driving. I also was having major issues with sensory overload - lots of motion and noise tended to be really, really disorienting.  So, because I didn't feel safe and I didn't think it was a good idea to risk injuring or killing someone, I quit driving.

Now, I think I can safely experiment with driving short distances with someone else in the car to see how I do.  I still have days where I'm foggy and slightly out of it. Sensory overload is still a problem - it's one of the major reasons I now HATE malls and grocery stores during busy times.  And my migraines can create or enhance depth perception problems. Pain and fatigue are also a distraction.  Medication is also a major concern.  I can't take anything that might be impairing if I'm going to drive.

But, my depth perception has improved.  My balance has improved.  I don't have nearly as significant an issue with involuntary movements.  Traffic patterns in Mississippi will be far less intense.  There isn't quite so much noise and motion with traffic, bikers, pedestrians, trains, buses, and skyscrapers all at the same time.  It's easier to pull off most roads.  I won't have to parallel park. 

So, the strategy I'm developing is to drive slowly (and stay in the slow lane while doing so) and try to give myself a little more reaction time.  Avoid driving in bad weather.  Try to drive only during quiet times.  Make sure I know where I'm going. Make sure I have pain meds that aren't impairing with me.  Keep a snack of some kind  and water with me as both low blood sugar and dehydration can be major contributors to migraines and CFS symptoms.  Make sure I always have my phone with me in case I get somewhere but don't feel well enough to drive back home.  Don't force myself to drive if I feel like I shouldn't. 

I have also discovered recently that lying flat on my back on a bench or something similar helps a lot with the sort of brain foggy-floatiness that I sometimes get if I've been sitting up or standing too long.  

All of the possibly impairing daily meds I have I take at night before bed which should help immensely with that particular issue.  Everything else is to be taken as needed and I'll just need to be sure I don't take it when I'm planning to drive.

I think we'll start out with very short drives and increase distance over time to see how I do. I'm really hoping I can drive again at least a little bit.  I would make things so much easier.  I could run errands during the day so Tom wouldn't have to try to fit them in to his workday or weekend.  I'd be able to get out a bit more and possibly have a wider range of potential employment. 

Dammit, George RR Martin

Image via WikipediaI finished A Dance with Dragons two nights ago.  Mr. Martin needs to cut it the hell out with the cliff hanger endings, especially if he is going to take brazillions of years between installments.  This is not good for my patience.

Otherwise, um, we're fiddling with my thyroid dose again trying to find the sweet spot.  I'll have to get the lab work done after we've moved to see if we got it right or need to fiddle more.
I have had another round of Botox shots for migraine.  Took a bit longer to feel (or not feel?) the numbness and paralysis in my forehead.  Still getting migraines, but not quite so many.
I am in an ongoing odyssey of trying to get replacement CPAP supplies and possibly repair before we move.  I have been trying for a month actually, but referrals keep getting lost or not sent and it is seriously starting to piss me off.  I am sensitive enough to stress and extra activity even with the CPAP but sleeping without it (or without it operating properly) will make everything WAAAAYYYYY worse.  And increase the time for my recovery to baseline functionality.  So, weeks or months to recover from the move, etc., instead of days or weeks.

I am still tired and shaky and hurty and having sleep problems after overdoing the packing last week.  Grumble.  The whole moderation and pacing thing with CFS is a pain in the ass sometimes all the time.

Still packing.  I have a lot of yarn.  Way more than I thought.  Mostly single skeins of acrylic or acrylic blend intended for amigurumi.  So I should, like, make more amigurumi and stuff.  Derp.

I have set aside my emergency travel projects and stash and a pile of actual paper books in addition to my Kindle.  I may have done that even before setting aside the important papers that should be easily available.

Oreo has had a bath and is grumpily curled up on my lap in a blanket to keep warm.  He finds the packing deeply confusing and a bit frightening and so has been even more of my furry shadow than usual.

Still Alive-ish

Image via WikipediaMy thyroid is being stupid again so we're fiddling with Synthroid doses.  I've also been having a dreadful time with migraines and trying to catch up after the 2-week span of evil pestilence cold.

Anyway, hopefully the new Synthroid dose will get me back in the sweet spot of not too high, not too low and maybe help the migraines.

I've finally decided to give CoQ10 supplements a trial too.  There is good, if preliminary evidence from limited trials for migraine prevention.  The supplements are a pricey, which has made me hesitate trying it, but I'm desperate.  So, 100mg 3 times a day for 3 months and we'll see if it helps. 

I've tried getting back to daily exercise after slacking off for most of the winter (because I couldn't bear to take my slippers and socks off to use the Wii in the cold) and managed to over do it Sunday and am paying for it today.  Because CFS needed to remind me it owns my ass, I guess.  Anyway, finding the right amount of exercise will help the migraines too.  My neuro did warn me that too much can be as bad as too little.  Fun. 

I've been trying to discipline myself to meditate a bit in the mornings too, but I have trouble taking the time.  It feels like "wasting time" even though it may help.

Better news though is that the blood pressure med we've tried for migraine prevention is at least helping with my heart rate - it's no longer sky high all the damn time.  So, um, yay. 

It's also gotten cold again but not quite cold enough for the boiler to be back on for the radiators.  My hands and feet are screaming with Raynaud's and even my lips were purple earlier today.  And Oreo and I have been fighting over the heating pad.

Hoping I'll feel up to actual posts again soon.

Limits and How They Suck

PoppySeed the Pomeranian, despite being a wonderful, cuddly, delightful little ball of fluff did not work out for his trial.
Unfortunately, I had over-estimated my ability to cope with a younger dog - he's about a year old, plus a jealous Oreo.
So, I'm upset in two ways - one because PoppySeed was a love and I really, really wish we could have kept him.  And two, because I've just had a fairly harsh reminder of where my limits are and that they are closer than I thought.
This follows on the heels of a mini-breakdown the last week of November when I had to call off from work and spend a few days in bed because I was physically and mentally exhausted to the point of collapse and slight mental health crisis. 
It used to be that I could work around my crashes.  I knew they were inevitable, but through the last years of college and through most of grad school I could push past the collapse point so long as I could crash at the end of a few days or a week.  I didn't even really realize then that that isn't exactly normal.
I no longer get to work around or stave off the crash or flare or whatever the hell you call it when it feels like I have the flu, can barely move (except for involuntary movements), need to sleep or stay lying down, and burst into tears with a side of ramped up anxiety and suicidal ideation.  It just hits.  If I'm lucky I notice the warning signs and am able to do self-care.  If not, I feel worse for longer.
I am at least grateful that I can take steps to mitigate the crash if I can just rest for a week (sometimes more).  And I'm even more grateful that most of the people around me have come to understand and accept that and don't seem to think it makes me lazy or worthless.

Anyway, I'll miss the adorable little fluffy monster, PoppySeed.  I know he'll find a happy forever-home.  For now, it will just be Oreo and me around the house during the day.

Post-Exertional Malaise in Chronic Fatigue Syndrome

Post-Exertional Malaise: Perception and Reality
Very interesting synthesis of some recent finding regarding fatigue, specifically "post-exertional malaise" in CFS. "Post-exterional malaise" refers to extended fatigue and general craptastic feeling after exertion - exercise, work, whatever - that lasts longer than would otherwise be considered normal. It's a very common issue for people with CFS.
The article notes that there are now some ways of actually quantifying and objectively identifying differences in PEM among patients with CFS vs. normal control groups.
There also seems to be a connection between aerobic exercise and PEM for people with CFS, which is not so much the case for people with other conditions with a large fatigue component, like lupus, rheumatoid arthritis, and MS.

I have a tendency to avoid aerobic activity because it's in the category of exercises that "suck; a lot" for me. I tend to have more physical discomfort and feel generally shittier after things that I consider highly "aerobic" (what I think is "aerobic" and what actually is may be different things). So, things like the Obstacle Course, Step Aerobics, Running, etc., in Wii Fit Plus or in "actual: practice tend to make me miserable. Actually, in general, anything that significantly elevates my heart rate and breathing tends to make me miserable and tire me out a lot faster. I thought that just meant I was a wuss. :P
Interesting.
Yoga, stretching, walking, range of motion stuff I can do for longer and tend to feel less discomfort during and after.
I may need to try paying attention to this more. It may be that I'm out of shape or it may be CFS-related.

Spinning My Wheels

What little reliable information I can find about Functional Movement Disorders says that, while improvement may occur over time, there will be highs and lows in that overall trend toward improvement.
I'm not sure if the last week or so has been a low or a plateau or what, but it hasn't been pleasant.

I've been dealing with a constant sore throat and general feeling of mank for a month or more. I often describe my general overall sense of health as feeling as though I'm just coming down with or just getting over a cold or flu. This has been a touch worse, but something I can generally cope with.  I'm guessing it's more related to allergies and Chronic Fatigue Syndrome than FMD.  I have noticed that the general feeling of flu-ish-ness gets worse if I over do it physically. 

The past week or so, though, has seen what seem to me anyway, like setbacks or stuckedness with my movement issues.  I've been far more tremory.  A certain level of tremor in my hands is "normal" for me and has been since about 2007, but this has been body-wide.  Wii Fit Plus exercises have been more challenging and I haven't been doing as well at them - that, at least, is a more objective measure than my overall sense - the scores are there to see.  And I can't seem to push past 12 or 13 minutes without trouble.

I've had or been getting over or coming down with a migraine what seems like almost constantly all summer.

I've been under a bit of stress - I suppose the job interview last week might have contributed a bit.  My pelvic movements have been the worst they've been since May starting Wednesday evening.  I'd barely had *any* major involuntary movement in my pelvis/lower torso since May, actually.  It's deeply frustrating.  It's also uncomfortable. 

I've been in more pain in general lately and had more brain-fog days.

I've been sleeping 12-14 hours a day and still feeling exhausted.  And my sleep schedule is shot to hell.

It would be easy, at this point, to say "screw it" and give up, but obviously that's not what I'm going to do.  I do my Wii Fit every day.  I try to get out and walk (though the heat wave made that hard).  My new therapist has arrived and settled in and I had my first appointment with her last week.  My formal physical therapy is coming up in August.  I try to be as active as my brain and body allow in any given day.  It's very rare I spend a day in bed.

It's just deeply frustrating and a little frightening.  I'm trying, I really am and I do feel better, but not well.  And the very nature of FMD or psychogenic disorders or whatever you want to call them suggests that the ability to heal resides directly with me.  Which makes it very easy to feel guilty about not being better.  To wonder if I really want to be better.  Is my brain playing tricks on me?  Am I playing tricks on myself?  Despite all the evidence that I am reasonably insightful am I missing some huge part of the picture.  Am I, in fact, seeing some benefit to being sick that I just refuse to acknowledge?  Something powerful enough to keep me disabled? 
Or is that a bunch of bull-shit?
And on top of that - does it matter?