Just What the Hell is Wrong with Me, Anyway?

     Hi there, my folks! I don't even really know where to start this one. I mean, we're talking about a pretty complicated situation involving a complex of unrelated and somewhat related health issues that exacerbate and feed into each other because the body is a system, not a collection of discrete modules. The kind of thing that makes people give up and throw their hands in the air after they quiz me for a bit ("Can't you just use a... Oh. But you could start with... Oh. Well, you should... Oh. So that leaves... Oh. Well, excuuuuuuuse me for butting in and interrogating you aggressively about your health if none of my solutions are gonna work, jeez!") or that they flat out refuse to believe in because I "don't look disabled" or I'm "only 52".

     Do I start with the stuff that's developed here in this second half of my life, or retreat all the way to earliest underpinnings, or some kind of combination? Well, surely that latter. You know me and the way I go on. For one thing, several of my problems would probably not be as advanced, as debilitating, or as annoying, respectively, as they are had I been raised differently. But I wasn't, so there you go. I was raised by someone to whom any deviation on my part from specific, expected, inadequately explained behaviors was by definition "attention seeking". Kind of understandable when the things happening to me were invisible, like the recurrent fatigue, the aching in my wrists which had me wearing elastic bandages regularly by the age of 15, headaches, gut cramps, that kind of thing. However, often enough I would be accused of "faking it" with a visibly swollen ankle, accused of irritating my own eyes to get out of school even though I would do nearly anything to avoid being at home and there was pinkeye going around, and the like -- some of you probably know that drill. I learned early to simply not mention when I was in pain or feeling unwell, because going to school, doing home chores, taking care of my younger siblings, all of that stuff while sick or injured was better than doing so anyway while also enduring the harangues about my inconsideration, my constant striving to be the center of attention, my inability to think of anyone but myself which were leveled at me anytime focus was shifted to me for any reason.

thought about anyone else before doing anything. If I really cared about anybody at all instead of being so selfish, I never would've gone for that walk or petted that dog (yes you can get a dose of poison oak by petting a dog that's recently been through some) or stood that close to the edge of the clearing or been pushed into the bushes by bullies, or whatever else had exposed me to it this time.

     Thus it was that I learned pretty quickly to never bother other people about my paltry uncomfortable physical situations. Anyway before that, I was already used to not being taken seriously; remembering the bladder infection days as just one example: I got a very bad one when I was 4 or 6, and was informed that my pain was imaginary, my urgency was attention-seeking, and my inevitable accidents were because I was disgusting and lazy. By the time we managed to get to a doctor because, after a few days, because the accidents had started to consist of blood, there was scarring, which still occasionally causes me problems now, 47 years later. I'm lucky my kidneys are OK.

     Anyway, enough about all that; the point was to make it clear that Stoicism about physical ailments was drummed into me from the very beginning. Combine this with a very high pain tolerance, a drive to physically overcome, and basic impatience with anything interfering with what I'm trying to accomplish, and it should be fairly easy to see that for the first decades of my life I wasn't particularly good at taking proper care of this old meat robot.

     So, umm, where to start? Chronologically? Holistically? Yeesh. Let's go ground up. The soles of my feet on upwards, describing problems physical or otherwise and their history and prognosis at each point. It's about time, right? There should be some kind of comprehensive picture. I'm always getting into it with people who say "oh, I thought THIS was your problem or THAT was your problem, not this other stuff" or they assume that this or that issue no longer exists simply because I haven't talked about it in a while, or talk about how "so and so has that and THEY don't have a problem with this, or that, so why do you?" People who assume that fatigue, burnout, and chronic pain equals not wanting to hang out with them. People who fail to understand that it isn't this one thing and that other thing and that thingy there, each to itself and each alone: really it's one body which works as one, unified machine, trying to carry all of this around at once. A good illustration of this is that if my knee or my back is out on a particular day, I can no longer use my walking stick because of the issues in my shoulder and hands, and the limp that results puts enormous pressure on the opposite knee, my hip, the old foot injury, my tennis elbow, and my golf elbow (on opposite sides; I have never played either game seriously, go figure), all of which drags horribly on my neck (especially since the meningitis of a few years ago) and intensifies the headaches. Most of which are not actually the things keeping me crippled right now.

insoles because around eight years or so ago this problem created for me the wonderful world of intense plantar fasciitis (also I'm developing hammertoes and have bunions). My insoles are wearing out right now and I'm going to have to replace them soon but they're not insured; going to have to do it anyway, because when I don't have them and it flares up I literally have to hold onto furniture to walk at all and it's agony. Additionally, thanks to the decades of hard manual labor and the old days when I had the opportunity to do the one thing that brings me true joyous physical bliss (riding horses), I have tendinitis in both Achilles tendons but that's mostly under control. Then there's my right foot… Back in the day, when I was an "illegal alien", there was an accident at a stable, must be 25 years ago now, in which someone else's mishandling of a stallion resulted in a horse greensticking all the bones in my foot while pulping the musculature on the top and right side and, in the words of the doctor at the hospital, rendering the tendons to halfway up my lower leg "spaghetti". Of course it didn't help that I needed that job and was unable to stop working, to stop walking on that foot. These days it doesn't give me too much grief except sometimes in winter, but it is turning into a nice little arthritis farm.

giant loose gardening clogs. When I went down, it was epic. That said, in true "me" fashion, I kept going. Needed to get ready: it would be my husband's birthday when he got back, and we had a very special present in mind, for which we needed particular tools, which I had no idea where to find. Additionally, daily life went on.

     In short, that ankle never really healed properly; just last month though, I was at an orthopedist about it, and it's going to be "okay": it's a torn ligament, it's permanent, it's not something that can be operated on, etc., but I'm in physiotherapy for it now to strengthen the supporting, surrounding muscles. Same as the knee. The knee? Well, moving on up… This knee, my right one, has suffered two very major injuries (one a smashing injury while jumping horses, the other from falling down a set of Dutch stairs), before I had health insurance. I spent months using walking sticks after the stairs fall, but of course needed to keep working (manual labor, always manual labor in those days). I'm in physiotherapy now for that too, finally, and it also is a matter of permanent ligament and tendon injury and this therapy is thus also aimed at compensation through stability-enhancing muscle building. There are signs as well that it too is enjoying the first kisses of arthritic change, in addition to ultrasound findings of spurs on the back of my kneecap itself. Whee!

     I have a lot of hip pain, particularly on the right, which can make it hard to sleep, but that's okay because there's not actually anything wrong with my hips. Just my back. Like my shoulders and neck, my lower back suffers from hypertonicity and has a strong tendency to fly into spasms. Not a big deal, super used to it, blah blah blah. That pulls on my hip though. That's not the main issue with my back. The core sitch with my back is the two spinal hernias. They're not bad enough to want to risk surgery; they haven't passed the point where the debilitating risks of the surgery are outweighed by my current situation. It's actually pretty much under control, but that doesn't mean what people think it means. I did a nine-month holistic physiotherapy and ergotherapy program for my back only a few years ago and it was very beneficial: I learned a lot about how to move, when to stop moving, when to start moving again, all that jazz. It's stable now, but that doesn't mean "oh yay, my back doesn't hurt anymore, I can do whatever I want". What it does mean is, if I plan my movements carefully, schedule enough opportunities to rest or stretch, and control my levels of enthusiasm enough to curtail my usual gung ho approach to everything, I can usually keep pain levels low enough that I can think about other things for just hours at a time! That is not to say that it isn't a constant, pervasive irritation, but that's okay, I'm totally used to it.

pain behind my shoulder blade and I couldn't move my arm. Very careful, very painful stretching gradually restored it over period of an hour to the point where if I kept my elbow pressed to my side I could use my hand. Obviously, given everything I had going on, especially being at the time pregnant and moving house, I ignored it. When I couldn't anymore because it kept doing it, I went to my doctor, who referred me for physiotherapy, which eventually ran out because I only had the most basic insurance but by then I had learned some techniques to kinda loosen it up and I learned enough stretching exercises to prevent it most of the time and anyway I had a baby to focus on, no time for me. It wasn't until a few years ago that it started locking up all the time, turning my entire right upper quadrant into one big cramp.

     So let's see, that's the nitty-gritty I think, the basics, and it is upon this map that my current situation is built. We've made it as far as my neck in the ground up stuff so I think it's time to take a break before getting into specifics, a timeline as it were, to mention the systemic things. First of all, I've always had trouble with my joints but that's probably because since the age of seven I've always been working hard physically. So that's not necessarily really systemic. My longest-running systemic issue caused me a lot of grief as a child: it's eczema, but according to the adult who raised me, it was filthy laziness. If I had a big scaly open sore it was because I "was a disgusting little wild child who didn't care about hygiene", never mind that I was a little obsessed with showering at the time (for which I was also often chastized for "not understanding how money works and that others worked hard for me to have access to hot water"). My arms and legs were usually covered in painful open sores which were treated at home as a sign of laziness and attention-seeking and ignored by adults elsewhere (also kind of disturbing because years later I was informed that at least one person assumed I was being burned with cigarettes, and yet as far as I know nobody ever said anything to anyone about it — least of all me). Nowadays of course it still plagues me, but at least I know what it is, and have my salves and unguents. As long as it's not one of those times when a crack opens up all the way through the sole of my foot (only every couple of years) it's OK. And aside from the residual effects of lifelong bouts of serious depression and a recent years-long period of severe burnout, which I will address in the next sections, the only other systemic issue I have is a direct result of supporting myself through all the rest of it. We're going to do some paragraphs now which are unpleasant. I'll try to keep the details as un-graphic as possible for you.

     From the age of 14 until I was 51 years old, I took ibuprofen as good as every day. It was a rare day when I would get away with four or six hundred milligrams; normally, I took eight hundred every six hours. I was in so much pain, you see. Still am; I really, really miss ibuprofen, but it is what it is. I didn't want (and still don't) to start on opiates, something that's been suggested by a number of doctors. I do now have some OxyContin on hand after my neck surgery, but since the initial recovery from that I've only taken two, widely spaced, after seriously overdoing it with gardening or similar, and sincerely doubt I'll be getting through the rest of it before it expires. That's just not a path I'm ready to go down. Nor am I into steroid shots; I've had three now, in quick succession, two for my neck and one for my hand, and I despise the side effects. They bring back the hot flashes which so plagued me during menopause 7 years ago, I gain weight, my blood pressure goes back up. Yuck. Oh yeah! My blood pressure! I had high blood pressure! It doesn't run in my family, my cholesterol is excellent even though I'm overweight, it seemed to be idiopathic. It was the yucks! Fatigue, headaches, grumpiness, bleah. That was a systemic thing too. Luckily, it turned out to be a side effect of the nerve compression in my neck -- which we will get to shortly -- and is gone now except when someone injects me with more steroids, currently the case regarding my right thumb.

     But first, back to the unpleasantness of one of my most irritating health problems. See, nearly two years ago I suddenly developed and then retained for six months extreme, unpredictable, watery, painful, explosive diarrhea. Such fun. Went through the usual try-this-firsts with the doctor (it's not parasites or coeliac or cancer or a food sensitivity or an allergic response, etc.) and then went for the ol' colonoscopy (with multiple biopsies). My first. Didn't find it such a big deal, not even the prep; I used to do four-day fasts and alternate-day fasting. Anyway, turns out I have lymphocytic microscopic colitis, caused by all that ibuprofen. During those days, I was still fighting the medical system and a brutal bully of a workplace-specialist doctor and what with the new development, if I wanted to leave the house I had to dehydrate for at least 15 hours. And I was forced to leave the house for terrifying, humiliating meetings with my boss or the workplace doctors. If I didn't dehydrate, I was that person who is the only group/class remaining that everybody thinks it's funny and OK to make fun of: the person who might actually crap their pants in public. Do you know how it feels knowing that could happen to you in a supermarket or on a bus or at a work meeting? Even though it never actually happened, not fun times.
     A couple of months of an oral steroid (damn I hate steroids) later and it's now been "under control" for over a year. Unfortunately, under control means different things medically depending on the situation. In the case of colitis it means I have periods of extreme urgency during which I dare not be more than 10 meters from the bathroom only up to three times a day, and in my case I'm very lucky in that for the most part this is concentrated in one part of the day only, and not every day at that. What this means for me, when it's acting up, which tends to last a couple or three weeks and then it goes away for two to four weeks, and so on, is that one to four times a week I have to launch myself from my bed between four and six in the morning. If I'm lucky enough to make it downstairs to the bathroom in time, I get to spend an hour or two in or very near said room. If I'm unlucky, which is happily pretty rare, I also have to take a shower and do laundry. Again, this counts as "under control" and I'm doing a lot better than many people with this condition. It does however contribute to the complete unpredictability of my days. Each of my various disabilities has a different pattern, or no pattern at all, forming a world in which I can't know from day to day whether or not it's wise to make any kind of plans. On some days, even just having a friend over for an hour can be completely exhausting or a trip to the park hazardous, but on other days I can hike the dunes for hours. Such fun.

     I think now that we've got the groundwork laid, it might be time to go chronologically, starting with when my boss left my workplace. Now, although everyone was glad to see the back of this boss, the circumstances were stressful for everyone involved and I'm not going to go into them here. At that time I was working with a part-time contract but consistently given temporary contracts for full-time with the promise that if one of my colleagues left, I would be given full-time. Now, I needed every single moment of work I could get my hands on, so I was constantly working overtime in addition to the extra full-time contracts and I was tired (menopause happened in there somewhere too and I didn't have the chance to change my schedule in any way about that, yay). Shortly after this boss left, a colleague left too. I approached the temporary boss and relayed the promises that had been made to me, unfortunately verbally only, and asked for those hours. Now, this boss was trying to keep a low profile while temping there, but was a nice guy, so I got myself yet another temporary full-time contract. My physical condition was as usual for that time: woke up exhausted, got my kid up and fed and ready and rendered unto the school, took the train because my back and knee and fatigue had become so bad I could no longer ride my bike the 21 km to work, stood for 8 to 12 hours while breaking this up periodically unloading pallets of copy paper, hauling recycling dumpsters to and fro, and the like, then trudged up and down multiple flights of stairs checking every room in the building for residual people, open windows, that kind of thing, locked up the building, took the train home, bolted some dinner down, watched an hour of something on TV with my husband, and went to bed to try sleep through the pain. Rinse and repeat. Enter the new boss, simultaneous with me starting the intensive four-day-per-week physiotherapy and ergotherapy training for my back which I managed to combine with work.

   Not going to go into this at great length. The new boss was a bully, she was a narcissist, and she had deep insecurities so that she always had to feel in control but never did. She strung me along for nine months about those hours, during which I did so much overtime and so much physical labor I could barely move while not at work. My RSI was back in both arms (a residual product of the work at the stable where my foot was hurt, see my blog entry "Injured While Illegal"), I was too tired to apply my eczema creams, getting dressed would take it so far out of me that I was barely able to walk to the bus stop to catch the bus to the train station, my arms were shaking all the time and climbing a short flight of stairs to lock up the building at night could take 10 minutes (and there were lots of stairs), so that I was getting home later and later. It was impossible to speak to the woman: one time, she asked me how I felt about something, and I said that it was within her rights to have done it but that I had found her approach "perhaps a little mean". This resulted in her literally pounding on the desk with her fist, leaning into my face so that the miasma of her liters of perfume enveloped me nauseatingly, and screaming centimeters from my now-spit-covered eyes, "How dare you? How dare you? You watch yourself, do you hear me?" She shook a painted talon so close to my eyeball I feared for its safety. People who'd worked there for decades left because of her. Eventually, the day she had promised to deliver her decision regarding my hours, she told me in a smirking growl, "I will never, ever be giving you those hours." Because of this, I spent the next nine months taking every possible smidgen of overtime I could grab, while simultaneously desperately searching for any other job. I didn't care whether it would be a supplementary job, maybe gutting fish or ushering in a theater or delivering newspapers or shoveling fast food, or a completely separate new full-time job of some kind. Any kind. The problem is, all of this delivered burnout before it delivered results. If you want a full description of the burnout, please see my blog entry "How I Started Writing Again". End result financially, I'm supporting a family of three on a disability pension that the government tops up to poverty level.

overarching sense of futility, a basic conviction that this is it and I'm never going to be able to get ahead for my family, which can make it difficult to try to start something new. Some other stuff, like trauma reactions to anyone whose hair resembles that boss' or a whiff of perfume like hers. Whatever, it is what it is; I'm doing better now, just not all better.

     But we need to go back in time now! See, just before the new boss started, just before I did the whole program for my back, my physical problems had become so bad that I really couldn't take it anymore. I spoke to my doctor who referred me to an orthopedist and a rheumatologist. The orthopedist correctly diagnosed my foot problems and sent me on my way with my insoles, which were life-changing. The rheumatologist, however, is another one of those random people who randomly contributed to destroying my life. First of all, we had a very long and very humiliating discussion about my weight. At no point have I denied that I'm overweight. I've struggled with this since my late teens. According to her, "all I had to do" was "start exercising". I explained to her that I worked on my feet all day, kept moving, until only a year or so before had for years ridden my bike 21 kilometers to work, made an effort to walk for at least one hour every weekend day, have a crosstrainer at home which I do use, and don't really eat all that much. All of this she waved away (literally) and told me that "all I had to do" was start with maybe 20 minutes walking every other day, and build up from there. This entire conversation repeated about five times before she told me that if I wasn't going to take my weight seriously she was done talking to me about it, and at that point we were able to address the rest of my problems.

     So. She had ordered an x-ray of my neck, she had prodded me all over, she had watched me walk and bend and all that good stuff. Yes, she told me, there was herniation of discs in my neck, but "none of it" was "bad enough" to account for any of my symptoms. She explained to me in patronizing tones that although it wasn't a typical presentation, I "simply had" fibromyalgia and "needed to get used to it". By "not accepting this", I was working against myself, and as long as I had aspirations of going back to how things used to be, I was deluding myself. I asked her why, if this was so, my entire right hand went numb anytime I looked to the right, one of the reasons I had suspected my neck might be involved in what was going on. She shrugged and said, "You're not getting any younger. Get used to it."

     Now, obviously I should've rebelled, I should've stood up for myself, I shouldn't have been a miserable wet blanket and just said okay you must be right, and gone away to "get used to it". But as we know I was hardly at my best at the time, deep in pain and fatigue and depression, so I took a referral for the physiotherapy and ergotherapy (and don't get me wrong, despite having to do it while also working full time, etc., that was an immensely valuable program and did help me a lot with dealing with my back problems) and went on into the situation described above. And thus it was that I spent the next several years steadily getting worse, while all the time trying to "get used to it". I was also tired, I remind myself, of fighting medical professionals because of the way the separate workplace assessment doctors work. They're under pressure to put people under pressure to get back to work, and some of them are very unkind people. Others are not but are constrained by the system and often burn out quickly. I had a basic and incorrect feeling at the time that if I kicked up a fuss about this doctor I would get labeled a problem patient and never listened to again.

     My shoulder was locking up more and more. My upper back began to join my lower back in days-long spasm fests, it became increasingly difficult to extend my right arm away from my body, and I was slowly crumpling over the right. Couldn't really go anywhere, couldn't sit for long stand for long walk for long sleep for long. Needless to say, this put extra strain on my lower back, knee, ankle, feet, psyche, blah blah blah, and I was just falling apart all over. Barely a human being anymore, really; just a walking, working, failing machine. Recently, about six months ago, I went back to my doctor and fessed up. I told her about the rheumatologist, I told her about my conviction that she had been wrong, I told her "this is coming from my neck". I begged for help. She looked at me for a few minutes and then said, "I could send you to an orthopedist at the hospital but you know, this is a complex presentation. I think I'd be sending you back into the same spiral. I want to send you to a specialist neurosurgery clinic to see whether or not they think they can help you."

     Well, if you've seen the other blog entries, you know that they could. They were doubtful at first because my presentation isn't classical for the nerve impacted but a nerve root block but paid to any doubts: my troubles improved briefly but dramatically -- definitive, thus. And as you probably know it's now three months since the surgery to clear out all the arthritic bone spurs and lumps and replace the useless and shredded intervertebral disc with a lovely titanium implant and I could not be happier with the results. Yes my shoulder hurts, yes my neck hurts, yes my arm is weak, yes my biceps and my elbow have been been denervated for so long that they may or may not ever return to full strength, but I can hold my arm over my head again and lift things without pressing my elbow into my ribs, and my shoulder, albeit very sore, hasn't locked up once since the surgery. My entire upper body and head shake sometimes because the jumping, twitching muscles are still very weak and have been dragged into new positions, tearing some and leaving others with too little to do, but it's okay: next week I start physiotherapy for that too; more stabilizing exercises, more good work.

     I think that just leaves my hands. I'm probably missing something; I've spent my whole life negating and ignoring pain and incapacity (yes, to my detriment), there's probably something or other I forgot to mention here, but for now I think this just leaves my hands. As of a year ago what I knew was wrong with them was the following: described as "worker's hands" by more than one medical professional, they run the gamut of worn cartilage, hypertrophic muscles, calcified tendons, overstretched ligaments, and etc., but the "new thing" is arthritis in both thumbs, a sad knell for my illustration, embroidery, model-painting, soapstone carving, and most of the other things I like to do. It was masked for too long because for other reasons, not least neuropathies from the long-crushed cervical nerve, which is going to need months to years to fully heal if it ever does, my hands cramp up or shake or randomly drop things anyway, but it's confirmed now. My left hand went through it first; I woke up one morning and out of nowhere my entire hand and wrist were red and grossly swollen. De Quervain's syndrome, but the original cause turned out to be arthritis. Weeks and weeks of splinting and exercises at the ergotherapist got the swelling down and taught me an entire new range and style of movement, because in her words, "the goal is to preserve as much movement as we can for as long as possible". When my right hand turned up with the same symptoms a few weeks ago, I was able to use what I had learned before to keep the swelling down and get things relatively under control again, but it's still a couple of weeks before I can get in there for some splints, at which point I'll periodically be a proper Lego minifig (although in my case not so mini).

     My biggest problem in general these days, I would say, is simply fatigue. So many of the things going on cause fatigue that I don't really stand a chance. Chronic pain: fatigue. Stability-building exercises: fatigue. Reactions to medications: fatigue. Stress and depression: fatigue. Colitis symptom: fatigue. Walking and otherwise moving carefully within the range required to preserve joint function: fatigue. Only three months since major spinal surgery: fatigue. Life situations requiring input, work, focus, provision of support, solutions, workarounds, and so on: fatigue. Lack of sleep from the rest of it: fatigue. Friends and family upset at how little attention I am able to pay to them in the form of visits, phone calls, video chats, what have you equals feelings of pressure and guilt equals more stress: fatigue. Deep financial uncertainty: fatigue. Oh well, it is what it is. It's possible that someday I will get more rest. It's probable that I will continue, gradually, to rally and find new ways to balance things against each other, and will begin to rise above. And if not, things are, since the surgery, at least quite a lot better than they were.

     As we move into fall now, I'm reminded that as so often before, this is a new beginning point and unlike some of the others, I'm a little better equipped to try to make something out of it this time, not to mention those immediately around me need considerably less direct support than used to be so. I'm continually learning new ways to work around my problems (although how the hell I'm going to focus my camera while wearing two splints on my hands I don't know) and if you know me at all you know that my response to a sense of futility and uselessness is always to try harder. All I really want anyway is a little space around me and my loved ones to make some happiness and get some rest, and, if I can, to bring some joy to the world. I definitely consider that probably achievable and anyway trying gives me something to do.

     I hope this entry has brought a little understanding into the absolute variability and unpredictability of my stupid body and how this affects my life in general. I hope too that the photos I've scattered throughout this entry have brought you joy. Until next time, be well, my friends, be at peace, and have a good time!