The Weirdness Hall of Fame

So, it’s pretty much a known fact that fibromyalgia causes pain and tiredness. Those are the main symptoms. But, as my post including 100 fibro symptoms showed, there’s far more to it than that, such as brain fog, internal issues, and depression. None of those are all that strange to hear.

But I have got me some symptoms that are just flat-out weird.

You may have heard of people who sometimes feel like there are bugs crawling on them. While I do experience the feeling of bugs on my skin that aren’t really there maybe three or four times a year, I much more often see—or think I see—bugs that aren’t really there. Sitting here typing on my laptop, I’ll think I just saw a bug dart by on the arm of our loveseat, or while I’m sitting on my bed, I’ll think I saw one out of the corner of my eye dart across the carpet. It happens a lot. I guess the only good part is that, since there usually isn’t really one there, that means I don’t have to track it down and squoosh it.

I can remember first experiencing this next problem when I was still in college, a good two years before being diagnosed. I get this feeling along the arch of my right foot that feels like there’s air blowing on it. That’s about the best explanation I can give to convey its weirdness.

Far more debilitating is what happens when a limb falls asleep. I like to sit on my legs, cross my legs, etc., a lot, but even without such help from me, I experience some part of my body falling asleep almost daily. I remember what it felt like years and years ago—it’s just briefly numb, then tingles as it wakes up. No big deal. But now, when something falls asleep, especially my leg or foot, I know I have to do one thing to keep what begins as a rather painful feeling from becoming a really painful feeling.

Hold still. Don’t move. [Groan…]

Problem is I can’t really hold perfectly still, a phenomenon I discovered when I had that MRI done last year. My muscles won’t stop twitching long enough for my foot to hold completely still until it wakes up. So if you ever see me stand up and say, “Oh no, my foot’s asleep,” and then freeze where I am for a couple of minutes with a grimace on my face like there’s a nail in my foot, you’ll know—it simply doesn’t feel at all like it does when your foot falls asleep.

In a slightly similar phenomenon, whenever I wake up, I find my hands and particularly—

Just saw a bug that wasn’t there, seriously; it was a black one. Sorry.

I was saying, I find my hands and particularly my feet, beginning about two thirds of the way down my lower leg, to be quite cold and numb-feeling. Yes, even if I wear socks. That’s a rather disturbing happening but a regular one. Haven’t given up trying to remedy it just yet.

A couple years ago, I discovered this one: the front of my scalp, roughly around the beginning of my part, will randomly feel extremely sensitive, as in no touching, generally for a few days. It’s quite painful.

My newest addition to the weird symptom list is an unaccountable, unpredictable sensation of heat from my throat down to my stomach. No, I don’t think it’s heartburn. I’ve had that. Not really burning, just heat. Is that possible to have one without the other? Kinda like Moses’s burning bush, except maybe the opposite? I thought I had found one common denominator for the happening: I had had food with garlic in it previous to the occurrence. But then it started happening without garlic, but with onions. And now it tends to happen when I’ve had neither and take a shower. Ugh.

Another rather new addition to my list, more so than the sand-papered scalp but less so than the heat with no burning, is the full-out feeling of a sunburn on the back of my neck when I am in the sun for even just a couple of seconds, literally, or when I get hot. This is one of those common fibro symptoms I’d read of but never experienced, and then it finally arrived. I knew I had a sunburn on my neck, so when I asked someone if my neck was red and they said no, it hit me. Duh—fibro. Good. Grief.

Much more serious than the fake sunburn, though, is a discovery made shortly after getting married. My husband had cleaned the bathroom while I was still in bed (as he does for me—he’s that amazing), and when I got up, he was done, so I went in the bathroom. As soon as I got in there I started feeling strange, and by the time I came out only a couple minutes later, I was about to pass out. It was an odd feeling, being on the verge of passing out with no stomach pain, which is how it happens any other time I almost pass out, thanks to fibro’s best friend IBS. Anyway, I got to the couch, where I soon recovered. And my husband immediately knew the culprit. Oh, I’m sorry—did I not mention that chemical sensitivity is another symptom? Oops. So bleach and I aren’t friends anymore, as it was in a cleaner he had used. And now it makes sense why Soft Scrub always made me feel weird when I was younger, as it has bleach in it. And also Static Guard, though for that one just chemicals and not bleach, obviously.

Finally, I’ve saved the most flat-out random, weird symptom for last. My ears do itch a lot, on the inside, which is also a symptom, but my right ear has a phenomenon all its own. It will suddenly, without warning or cause, turn bright red, as if it suddenly has a good fever, and burn like it also, to the point I’ll sometimes have to hold something cold on it to alleviate the heat. Every now and then it happens after I’ve touched it, but usually spontaneously. This also means I can’t wear earrings (and don’t have my ears pierced), as it can’t handle anything touching it. My left ear has done it a couple of times, but my right ear very faithfully does it at least once a week. Even my doctor was baffled by it, as it serendipitously happened once while I was paying him a visit.

So, never think that fibromyalgia, with all of its pain and tiredness and depression, is anything close to boring, as I never know what each minute will bring. And if you ever see me with a flaming red ear, please try to ignore the outburst, as it always calms down eventually.

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A Prison Within a Prison

The other day in one of my many times of collapsing on the bed in exhaustion, something obvious my brain hadn’t yet put words to hit me. (Or maybe it had before, and I just forgot….)

There is always something wrong.

Maybe I’m crazy, but I was under the impression when I was younger that, generally speaking, the only pain a woman regularly experiences is monthly pain and the occasional stomach ache. Right? Ha—the monthly pain is just something to add to the list—just heap it on top of the rest, and within so many days, unlike the rest, it will be over for a few weeks. And at least I’ll know exactly how to handle it.

Instead, daily, hourly—constantly—if there isn’t an invisible knife in my arm, there’s one in my temple.

If the side of my hand doesn’t feel like I left it on a cold window too long, the front of my scalp feels like it’s had some sandpaper rubbed on it for a bit.

If my teeth aren’t aching from another headache that’s making my head about to explode and leaving me in tears out of sheer helplessness, the right side of chest is unaccountably hurting.

If my insides aren’t at a stand-still, making my system feel very pleasant, the front of my stomach is aching in the most indescribable not inside but not outside kind of way.

If my wrists don’t feel like I have carpel tunnel, my arms are all tight and stiff.

If I’m not weak, foggy-brained, and semi-functioning from sensory overload, I’m so tired that it’s a task to lift my arms to put on chapstick.

I could go on and on. And if I’m lucky, a handful of those are all happening at the same time, each out of the blue and with little to no apparent cause.

Then at the end of the day, or rather when I finally retreat to the bedroom, I don’t collapse into bed and find relaxation. I collapse into bed and find I am so weak you’d think I’d run in circles all day, or that my muscles are twitching with no help from me, or that my neck and shoulders are so tight there is no position that can possibly relieve them, or that relaxation is after all impossible as I cannot for the life of me will my body to relax. Or that any number of the previously mentioned problems are yet occurring.

To say nothing of my brain hosting about six or so topics at once and remembering and then forgetting all the things I’d forgotten that day and all the things I need to do the next day and the next week, in addition to hosting any growing emotional wreckage. I do not go to bed and find relief in the silent darkness. I go to bed and watch my body paint the silent darkness with feeling after feeling of discomfort, pain, and/or despair over my body.

So fibromyalgia is not just my life sentence, where I really get no days without relief. It means that though I can distract myself for a few minutes or fall into fitful, unrestful sleep for a few hours, this sporadic disease holds one guarantee: There will always be at least one something wrong. Kinda like my own prison within a prison.

A Day Without Pain

As abnormal as fibro makes me feel, believe it or not, I do still get to enjoy all the “normal” sicknesses that plague humanity. Such as a cold. This past week I had one of the worst I’ve ever had. Understandably, I felt horrible. Fibro already tends to leave me miserable, so add a very nasty fever-causing, sore throat, aching all over, cold-sweat, shivering, roasting cold worsened by already having fibro, and I didn’t know how I was going to get through it.

So overall, my discomfort was relatively understandable. And also very temporary (after the shot and antibiotics that have become standard procedure for me, that is). Because when you have a cold, you know one day very soon you’ll wake up and be all better. Oh for the temporariness of bad things: “It will get better,” and “This too shall pass”? Not in my case.

Living with fibromyalgia is like having a life sentence with no hope of release—all in response to a verdict of innocence. Or like being held under water and knowing that you don’t get to come up for air.

I am allergic to potatoes, a discovery made a couple decades into my life.

I miss them. I want some French fries really, really bad. I know I can never eat them again, yet I wish that I could eat them just once more—to have just one day that I could order them like a normal person, instead of having the boring replacement of a salad or cole slaw. But as much as I wish I could get away with just eating them once, I know the hope is ridiculous.

Similarly, but much more seriously, I know I won’t ever wake up one day and be cured of fibro. I don’t earnestly even wish for that. I just wish I could have one day without any pain, just one day’s break to hope for or look forward to.

Even though I hate colds, boy, do I love how you know they do go away eventually. But the knowledge that there will likely never be a moment in this fibro body where I actually feel no pain is, in most moments, more than I care to imagine but impossible to escape.

All My Fault Even When It’s Not

I don’t think I’ll ever understand the rather common phenomenon of people taking any negative happening that involves them in some way and twisting out a reasoning that involves their being the one at fault.

I am sure there is some psychological explanation that leads people to do this. But I’m content to go with the thought that they care so much about the people in their lives that they automatically want to take the blame for everything. Even when it doesn’t make sense at all. I sometimes have this tendency myself, at least inwardly, and have a husband who has a very strong tendency toward it, so I’m getting used to trying to combat it when it is probably well-meant but completely irrational.

For some reason, feeling guilty is an easily come-by feeling, in so many areas, chronic illnesses included. And I don’t just mean guilt over the dishes piling up for a few days. (Gasp, I know.)

It is extremely difficult to articulate exactly what fibromyalgia feels like physically. A lot of people compare it to the flu that never goes away, for lack of a better common experience with healthy people—a terribly wanting analogy in my book. But it is just as hard, if not harder, to articulate exactly what fibromyalgia feels like emotionally. There’s a double thrust of steady artillery flying at the emotions, each vying for attention and exacerbating the conflict by the others’ presence.

Life like this stinks. It leaves you upset, disappointed, and unsatisfied and feeling unaccomplished, unhelpful, quite a failure, and definitely less than human.

But as if the unignorable stabs of all of that aren’t enough, there’s the more subtle but equally crippling feeling that I have recently discovered thriving in the back of this over-stimulated, exhausted mind: guilt.

How silly—it’s an unexplained chronic illness with no cure, no certain cause but only guesses, all of which are not my fault. And also knowing I’ve dealt with levels of this since I was about twelve settles the fact: I surely did not cause myself to have this. I didn’t drop the ball on life, not exercise enough, not eat well enough, spiral myself into depression, or grasp at straws for pity and attention. Fibromyalgia chose me; I did not choose it.

So why do I even begin to feel like I’m to blame for my life being like this? The fact that I know my having all of these problems not only inconveniences family and friends but confuses them, burdens them, saddens them, and worries them. Especially my husband, obviously. I know he understands. I know it doesn’t make him upset with me or disappointed in me because he knows it’s not my fault and I don’t exactly have control over what I can and can’t do each day.

But honestly, I figure it’s a lot to ask to expect people to never, ever get annoyed when I have to put off talking to a good friend on the phone for a few days because I couldn’t get out of bed in time to call her, when I don’t even want to think about fixing dinner and ask my husband if he could just pick up something, when I miss a month or more of Sunday morning services because my sleep cycle is so out of order, or when I finally fall asleep just after hearing my husband leave for work in the morning, the birds chirping (a.k.a. screaming to a non-morning person) and the rest of the world up and living like you’re supposed to.

And yet, even though no one has chewed me out for these things or really implied frustration with me, I assume they must be feeling that way at some point or another. I feel like it’s my own stupid fault, even if I didn’t cause the illness after all, for not trying harder or something. Maybe I am a lazy bum. Maybe it is all my fault for all my social and house-cleaning shortcomings.

Even though I know thousands of other people feel just like me, the guilt is still there, intangibly, hauntingly, so evenly spread over my unpredictable emotions that even I am sometimes fooled.

So what do I do about it? Well, when my husband starts the irrational guilt thing, I lovingly but firmly tell him to stop. It’s completely irrational, and he sees that.

Now if someone could just get into this brain, give it a good shake, and show it how completely irrational it’s being, maybe it would see that and shut up. And then maybe I could start trying to deflect just one line of fire, instead of two.