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.

Two unrelated but awesome things

Image by Stephen Rees via Flickr
Edit: Formatting on the quotes got super weird. Trying to fix that:

The first is this amazing article by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (also amazing, by the way). Toni has a gift for explaining the common lived experience of people with chronic illness and their caretakers in a way that is clear, empathetic, and elegant without drifting too far into the "oh woe is me" or the "I will tough everything out and pretend everything is just fine." Definitely worth the read.
A few quotes in particular resonated with me:

Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural norm

And:

Many of us believe that we've let our family and friends down.

And:

The dilemma of how to "present" to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?  

Also:

We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: we're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit. People aren't deliberately being insensitive. They just don't know.

And:

Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.

On a lighter note, I enjoy watching jackasses get their comeuppance and boy has that happened with a vengeance with The Bloggess and a particularly clueless PR company (not the one that tried to recruit me to write for a "Mommy Blog" who had obviously not read much of anything here).
I sort of regret not being in Chicago anymore as I would have given serious consideration to dressing up like Beyonce the metal chicken and going to the PR company's offices downtown to tell them "Knock, knock, motherfuckers." Pretty sure that would have been the best bus ride EVAR.

30 Things About My Invisible Illness You May Not Know

Image via Wikipedia

1. The illness I live with is: Chronic Fatigue Syndrome, Migraine, Undifferentiated Connective Tissue Disease, Functional Movement Disorder, Hashimoto's Thyroidits, Reynaud's Disease, Scoliosis, Depression, possibly Fibromyalgia
2. I was diagnosed with it in the year: 2008-2010
3. But I had symptoms since: the mid 1990s
4. The biggest adjustment I’ve had to make is: Recognizing that pushing myself to work harder or do more is counterproductive.
5. Most people assume: If I just tried harder I could do more. That my fatigue is the same as having missed a few hours of sleep a night.
6. The hardest part about mornings are: Deciding what needs to be done and can be done for the day.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My cane, with my rubber gloves a close second.
9. The hardest part about nights are: Insomnia, pain so severe that I can't sleep
10. Each day I take __ pills & vitamins. (No comments, please) 14
11. Regarding alternative treatments I: Am cautiously aware of and willing to try some
12. If I had to choose between an invisible illness or visible I would choose: I honestly don't know.
13. Regarding working and career: I enjoy working and I sometimes regret that my chosen career as a field archaeologist in Egypt and Sudan are not really possible right now. I've come to realize though that my own physical and emotional well-being are more important.
14. People would be surprised to know: I still have times I think I'm just not trying hard enough or think I'm just lazy.
15. The hardest thing to accept about my new reality has been: I really can't just push past my limits even for something I really want to do and would enjoy.
16. Something I never thought I could do with my illness that I did was: Drive again. I've been cautiously driving short distances with my husband now that we're no longer in the crazy busy environment of Chicago.
17. The commercials about my illness: Annoy the crap out of me and suggest that medications will be a miraculous cure when it's more likely that they will be an incremental improvement.
18. Something I really miss doing since I was diagnosed is: Riding a bike.
19. It was really hard to have to give up: My career plans.
20. A new hobby I have taken up since my diagnosis is: Spinning with a drop spindle.
21. If I could have one day of feeling normal again I would: Dance
22. My illness has taught me: What is really important in life; that contentment is based on your own desires and needs and not on meeting the expectations of other people.
23. Want to know a secret? One thing people say that gets under my skin is: "oh, I'm tired/hurt too, it's just the weather or allergies."
24. But I love it when people: Try to keep in mind my limitations when planning things or ask for my input instead of assuming I can or can't do something.
25. My favorite motto, scripture, quote that gets me through tough times is: I just have to get through this minute, hour, day.
26. When someone is diagnosed I’d like to tell them: It will be hard. There will be people - friends, doctors, random strangers who disbelieve you or dismiss you. But what you feel is real, your need to be treated is real. You don't have to prove yourself to anyone.
27. Something that has surprised me about living with an illness is: How judgmental some people can be even when the illness has nothing to do with them.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me, believe me, help me.
29. I’m involved with Invisible Illness Week because: The way chronic illness, visible and invisible, is regarded in our society needs to change from an expectation that anything can be overcome if you just try hard enough or take the right medication, that accepting one's limitations is regarded by some people as defeat, that people with invisible illness are malingering or overly dramatic.
30. The fact that you read this list makes me feel: Hopeful.

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. 

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.

Are You Wishing You Could?

roniAre You Wishing You Could?
I was going through my Google Reader backlog and found this from over a month ago. I liked the idea of a "wish I could" list. Especially since I wonder if actually vocalizing (typolyzing?) some of the wishes might help me find ways to make them happen.

So, I wish I could:
- Take long hikes
- Drive safely
- Bicycle
- Dance, especially take a class
- Go out in the sun without having to be covered in sun protection
- Dig professionally
- work full-time

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with are: Chronic Fatigue Syndrome, Undifferentiated Connective Tissue Disease, Functional Movement Disorder, Sleep Apnea, Delayed Sleep Phase Disorder, Migraine, Mitral Valve Prolapse, Depression, Hashimoto's Thyroiditis
2. I was diagnosed with it in the year: Heh - a lot of the diagnoses came in 2008/9; some like the MVP well before that
3. But I had symptoms since:  my mid-to-late teens, so about 15 years
4. The biggest adjustment I’ve had to make is:  No longer being able to bounce back from illness or overwork or push past exhaustion or pain
5. Most people assume:  That I'm "just tired," or that I only became ill very recently and don't realize I was coping with symptoms increasing in number and frequency over a long period of time.
6. The hardest part about mornings are:  Getting going and trying to figure out how much energy I'll have for the day and how best to use it.
7. My favorite medical TV show is:  MASH
8. A gadget I couldn’t live without is:  My cane.  Seriously, my cane means freedom and independence for me even on the days when my depth perception is shot and I have vertigo or my legs don't seem to want to function properly.
9. The hardest part about nights are:  Getting to sleep, especially when I'm in too much pain to ignore it.
10. Each day I take __ pills daily (No comments, please) 9, assuming I don't take any "as needed" meds for pain or allergies, like Aleve, ibuprofen, Klonopin, Benadryl, etc.  It's usually more than 9.
11. Regarding alternative treatments I:  I do careful research and look for clinical studies and other information about certain treatments, in particular herbs and supplements, make sure there isn't a risk of interaction with any existing meds or illness, check with the appropriate doctor, and give it a try.  My basic philosophy is that if it isn't hurting you in some way or interfering with evidence-based medical treatment and it makes you feel better, that's all to the good.
12. If I had to choose between an invisible illness or visible I would choose: I don't think I can make that choice.
13. Regarding working and career:  I chose to give up my career as an Egyptologist because I simply couldn't manage finishing my PhD and then go on to try for a faculty position or do field work in my current condition and because I didn't think I could find an adequate balance of stress and health.  But I have found ways to keep busy.  I'm working part-time in a relatively low-stress position.  I'm also slowly working on developing a home-based craft business.  My entire perspective has shifted from living to work to working to live (cliched though that may sound).
14. People would be surprised to know:   I think it depends on the person and how they think they know me.  Some people would be surprised to know that I've accepted the reality of my illness and am, for the most part happy in spite of it all.  Other people would be surprised to know that there are days when I sob over not being able to lift a milk jug because it reminds me of all I can't or find hard to do.  Anyone who really knows me though, probably wouldn't be surprised at all to know that after the sobbing, I pull myself together and figure out a way to get the milk I wanted and then laugh at myself for getting all emo.
I doubt many people know or guessed that there were days when I felt so alone, so agonized, so guilty, so much a burden, and so hopeless that I wanted to die, because that would somehow be easier for me and everyone around me.
I don't know how many people know that when we were waiting for my Huntington's Disease test to come back (it was negative) my first thought was how horrible it would be for my husband to watch me decline and die and my second thought was wondering, if the test came back positive, what that would mean for my parents, half-brothers, and nephews and niece.
I don't know if anyone knows that there are days when I feel like a lazy, melodramatic, wimpy fraud.
15. The hardest thing to accept about my new reality has been:  I have limits and I cannot predict how I'll feel from day to day.  That some people just will not believe me or come even close to understanding what my life is like now.
16. Something I never thought I could do with my illness that I did was:  Go out by myself further than just to doctor's appointments
17. The commercials about my illness:  There are commercials?  I don't have regular TV anymore - have they finally opened Cripples R Us?
18. Something I really miss doing since I was diagnosed is:  Running, riding a bike, driving, digging
19. It was really hard to have to give up:  Driving, but I don't feel safe and I can't bring myself to put other people at risk if my attention wanders or I have a weird muscle spasm or my depth perception is totally off.
20. A new hobby I have taken up since my diagnosis is:  Crochet, Knitting, Sewing, Polymer Clay
21. If I could have one day of feeling normal again I would:  Dance
22. My illness has taught me:  Patience, the value of friendship, the value of family, ingenuity
23. Want to know a secret? One thing people say that gets under my skin is:  I can't limit this to just one.  "Oh, yeah, I'm tired too.  We're all tired."  And "You should get out more."  And "It's all in your head."  And "If you'd just try harder."  And "But you're so young."  And "But you don't look sick/in pain/tired."  And "Have they figured out what's wrong (and fixed it) yet?"
24. But I love it when people:  Ask if I need help, anticipate that I may not be able to handle certain things, genuinely try to understand what my life and illness are like now.
25. My favorite motto, scripture, quote that gets me through tough times is:  You're never given a burden heavier than you can carry, no matter how much it may seem otherwise.
26. When someone is diagnosed I’d like to tell them:  What you feel is real, your health is real, and your needs are real.  Don't let anyone tell you otherwise.  Learn to set limits and remember that because so many of your symptoms are invisible, you have to tell people how you feel.  They aren't mind-readers.  It will help you and the people around you adapt so much faster is they really know what's going on.  Telling people "I'm in pain" or "I don't think I can do that" is not the same as complaining.  It's being proactive.
Also, give serious consideration to exploring mental health counseling or therapy.  The right therapist and program can help immensely with coming to terms with your health, coping with feelings of grief and guilt, and learning how to relate to the people around you.  It doesn't mean you're "crazy" or that your illness is "all in your head" - it means that you're taking all the measures you can to keep yourself as healthy as possible and to learn as many coping skills as possible.
27. Something that has surprised me about living with an illness is:  How quickly I've learned to cope.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Being there and supportive and undemanding
29. I’m involved with Invisible Illness Week because:  I think it's important to add my voice and my experience to increase awareness of "invisible" illnesses - their existence and the experience of living them.
30. The fact that you read this list makes me feel:  Grateful.

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?