Archive for the 'CFIDS/ME' Category

Why Barnum Is No Longer My Service Dog

Hi!

I don’t blog here at After Gadget anymore. I moved to SharonWachsler.com over a year ago, but I still get notices from WordPress telling me that new people have subscribed to After Gadget. This post is for you subscribers to tell you my REALLY BIG NEWS and to invite you to subscribe to my ACTIVE blog, sharonwachsler.com because this blog you’re subscribed to here generally has no new content!

Moving alone: My big news is that I no longer have multiple chemical sensitivity (MCS), and I no longer have chronic fatigue immune dysfunction syndrome/myalgic encephalomyelitis (CFIDS/ME), and I no longer have chronic Lyme disease and coinfections! Thus, I no longer need a service dog! Barnum has been “career changed” to “demo/training/sport dog” as I work my way toward becoming a professional dog trainer.

I am currently interning with two trainers, Caryl-Rose Pofcher and Elise Gouge. I’m learning tons from both of them.

Barnum and I have not started our sport training yet. He has had an ear infection for 16 months (no, that’s not a typo!) which has been treated with everything you can imagine, from ointments to oral antibiotics to acupuncture to full-sedation ear flushes. We think this very nasty chronic infection is due to underlying hypothyroidism (already being treated) and food allergies (which we’re sussing out now). This means that he’s on an eight-week trial of ostrich and quinoa. Although I have found ways to do treats and toys with ostrich and quinoa, it’s incredibly expensive and time-consuming, so I’m waiting to do classes with him till the food situation is easier. We will start introducing new foods into his diet in three weeks and see how he does with them. (Yay!) I already know he’s allergic to chicken. I am really, really hoping he is not allergic to beef, pork, turkey, and/or duck.

If you want to keep up with me and Barnum, or if you want to know how I recovered my health after 18 years of severe, disabling illness, please check out my current website, SharonWachsler.com. That is where I blog now. That’s where I have info about my writing, consulting, dog training, etc. If you want to skip directly to my recovery story, including “before” and “after” pictures and videos, read the post I published a few days ago. If you want to learn more about neuroplasticity and HOW I recovered, visit my page on neuroplasticity and my recovery.

I’ll leave commenting open here for a short time to support ease for readers who are not familiar with my new/current blog, but my strong preference is for you to comment on my new site (so I don’t have to keep logging in and out of two different websites). Thank you so much for your support and interest in my blogging and all-things-dog over the years! I really appreciate all I have learned and continue to learn from you!

Love,

Sharon and Barnum, Former Service Dog

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REPRISE life w/lyme, mcs, cfids: a different kind of typical atypical

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

– Sharon

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.
Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Insomnia and Creativity and Neuroatypy

I haven’t slept since yesterday afternoon. Before that, I slept for two hours, from 2:00 AM to 4:00 AM. Before that, I slept from . . . well, I can’t remember. I can’t keep track of which days are which anymore, even worse than normal, because if I don’t sleep on Sunday until 6:00 AM Monday, does that count for Sunday’s sleep or Monday’s?

I’ve had a range of sleep disorders since I first was chemically injured in 1995. In fact, when I was falling ill, I remember having terrible nightmares, every night, and I didn’t know why. Then, as the CFIDS/ME and MCS got worse, I slept less and less until I was sleeping literally no hours per night. Thank god, a doctor gave me Elavil and that worked.

Over time, I had to raise the dose, but it helped a lot with sleep and with body pain, as I discovered the few times I had to go off it. And I’ve added other things that help a little. And I’ve tried everything that’s been available for sleep and most of them, I have one of two reactions: 1.  No reaction. As if I’ve taken a sip of water. I can take twice the normal dose and feel nothing. I’m wide awake!  2. A paradoxical reaction. This is when you take, for example, Valium, and your body’s response is shaking, sweating, anxiety, racing thoughts, pounding heart. Well, you get the picture. Not sleep-inducing.

I’ve been on a vampire-ish schedule for many years. It’s common in people with CFIDS/ME — we don’t “do” morning. But after getting chronic Lyme disease and coinfections, it’s gotten worse and worse. Lately, my body seems to have written a contract which I don’t remember signing that if I fall asleep before 5:00 AM, I will sleep, at most two or three hours, and then I will be awake for another twenty-two or so.

Sadly, the less sleep I get, the more pain I’m in. The more pain I’m in, the more exhausted. The more exhausted, the more shaky, mobility-impaired, voice-impaired I am. And all this isn’t even touching on the cognitive impairment: the brain damage from the carbon monoxide poisoning. The brain and neurological damage from Lyme and babesia and Bartonella. These days, I can’t read. Not only can I not read books, I can’t even read long emails. I can’t remember words I used to know. I keep wanting — desperately, desperately wanting — to blog about how torturous it is to be a writer who is brain injured and can’t read and can’t even explain why I can’t read. Can’t explain why my cognitive impairment has gotten so much worse. For a year, I’ve started draft posts here and at my writing blog, about my cognitive impairment and how it affects my writing, and I never finish them.

And what makes the level of illness and dysfunction and cognitive impairment I’ve been dealing with even worse is that I now have the desire to write again, to be creative again, which Lyme stole from me for a few  years, but I can’t access my creativity. That spark. The place where leaps happen in poetry or fiction. In world-building. In taking risks.

Instead, I follow this bludgeoning, insistent mundanity, of persuasive arguments about disability rights or descriptions of training regimes — essentially, “What I did (with Barnum) today.” And I wonder where the other part of me has gone, and if it will come back.

One thing I have noticed: Often, when I do my best writing — my most risk-taking, creative writing — is when I am really sick, and often in the middle of the night. But it’s a certain kind of sick. Like, a certain migraine state, if I can write through it, can produce good work. A certain level of disconnection from my body required by, or a result of, pain and exhaustion and cognitive strangeness.

These are usually short pieces, because I’m too sick to write anything long, and if I do attempt something long and don’t finish it, when I go back to work on it in my “normal state,” I can’t recapture the spark. It just sits there, unfinished. I have possibly hundreds of such pieces.

But, if I’m too sick — if I’m really, really sick — I can’t write at all, and I don’t want to write at all. I have no creativity. I don’t care about anything except the amount of pain I’m in and just trying to do as little as possible — not to breathe or swallow or shift in bed — to get through it. I have no leaping thoughts. I have no desire.

Then, a couple of weeks ago, I read a great article in Scientific American called The Unleashed Mind: Why Creative People Are Eccentric. I’ve never considered myself exceptionally creative nor exceptionally eccentric. I think I’d score above average on creativity and possibly a bit on eccentricity, but nothing like the examples they gave. However, most of the focus of their research was that the connection between creativity and eccentricity is people who tend not to filter out a lot of sensory stimuli and other information that we mostly consider “background noise.”

To me, this fit with the state I’m in sometimes when I’m sick enough — especially when something neurological is going on, like a migraine, which is believed to be a form of slow seizure, that that shifts my thinking. And it fits why I haven’t been having these spells of creativity — because now, when I’m sick, I’m too sick to write. And my brain is too impaired most of the time to have that plasticity to leap when there are opportunities. It’s filtering out too much. Not just what normal brains filter out, but additional stuff — words, memories, concepts.

And then, the bout of really extensive insomnia. It’s coming up on 24 hours since I’ve slept. And I entered two flash fiction contests today. I haven’t done any creative writing for many months, and now, when I literally almost fell over, because my legs gave out when I was transferring from chair to bed, because my muscles are so shaky from exhaustion, I could slip into that place where I could let go, and my thoughts took me places.

Are they GOOD places? Is the writing interesting or worthwhile or actually creative? I have no idea. I’m too exhausted to have any clue. But I did it, and that’s something. And it will probably have to be something I remember for a good, long while, because when I crash at the bottom of this crash, it’s going to be a severe, severe crash. I can feel it in the way  my body is locking up. So I have a certain desperation to get this post out before it does.

If you want to read what I wrote today, I entered the #TuesdayTales contest at GlitterWord, over which you have no control of the outcome. And I entered my original and favorite, #FiveMinuteFiction — and I’m a finalist! So, you can actually vote for me, if you want to.

And now I will go to sleep. I don’t know when you’ll hear from me again, but maybe there’ll be a leap somewhere between here and there.

– Sharon, the muse of Gadget, and Barnum, SDiT extraordinaire

What’s in a Name? Lymie, yes. Canary, yes. CFIDSer, yes. Patient, no.

The Patients for a Moment (PFAM) blog carnival goes up this Wednesday (gulp — tomorrow!). This was my call for entries. The submissions so far have been fascinating. You can look forward to a great carnival!

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.

Are You a "Patient"?

The “P” Word

Meanwhile, here is my post on the topic I picked (and why I picked it).

PFAM — which has been occurring twice a month for over two years — was my introduction to blog carnivals. The first time I saw the term, “blog carnival,” was in a call for submissions for PFAM. I immediately found out what a blog carnival was and determined to get involved in PFAM. I have written posts for PFAM a couple of times, but I didn’t contribute nearly as often as I’d intended, and until now, I never volunteered to host. This is in contrast to the disability blog carnival, the ChronicBabe carnival, and especially the Assistance Dog Blog Carnival, the latter of which I founded.

Some of my difficulty with PFAM definitely stems from its structure — the tight deadlines* and the requirement of answering a specific question don’t gel well with my physical and cognitive limitations. However, given how often PFAM occurs, how much I enjoy blog carnivals, and the fact that PFAM is a chronic illness carnival, I thought to myself, “What is holding me back from getting more involved with this community?” The reason was staring me in the face: I don’t identify myself as a “patient.”

“Patients” isn’t just the first word of PFAM, it’s also central to its purpose (quoting the carnival’s “about” page):

Patients For A Moment is a patient-centered blog carnival – for, by, or about patients. . . . The goal of the carnival is to “build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.”

The actual goals and membership of the carnival are quite sympatico with my interests — “build[ing] connections within the community of people who blog about illness, disease, and disability” — and I am familiar with several of PFAM’s contributors. But I couldn’t see my way clear to hosting the carnival unless my topic was to question the use of the term, “patient,” itself.

Some might find my focus on that single word, “patient,” to be nitpicking. Yes, I’m a writer. Yes, words are important to me, but my feelings about being called a “patient” go beyond semantics. I have a visceral reaction, bordering on revulsion, at hearing myself described this way.

To me, the only accurate or appropriate use of “patient” is situational. It is either relational — the person who is one half of the doctor-patient dyad — or it is locational — the person who is in a medical environment (usually a hospital) — receiving care, undergoing tests, or consulting specialists.

However, just as often as I read or hear “patient” used in one of these appropriate contexts, I also see it used as a generic term for a person with a chronic illness, condition, or disability. How I react to this usage is determined by who is using it, and how. Specifically, it makes a difference to me if it’s a mainstream/”nondisabled” person or form of media using it, versus when someone with the disability in question is using it about themselves.

When the Nondisabled World Calls Me a “Patient”

My reaction to nondisabled/healthy people referring to me as a patient is relatively clear-cut. I don’t like it. Almost every magazine, newspaper, or TV program referring to someone with a chronic illness will refer to them as “patients” — if we’re lucky. Usually, along with references to patients, we are also “struck with,” “afflicted with,” or “the victim of” our disease. That last one really highlights the problem with this kind of language: to be a victim means to have been attacked and helpless, as if the disease has some sort of malicious intent, and we have lost all power and control. Such language supports a perception of people with disabling chronic illnesses as pathetic and different. We are not just regular people, living our lives; instead, we have been singled out for attack, poor things. I am one of a massive movement that has been trying to get writers and journalists to use “person first language” for over two decades, with little success.

“Patient” may not technically carry the same weight as “afflicted,” but its usage, its social weight, puts it in the same category as this more obvious “victim” language. To be a patient is to be medicalized and stripped of our identity as people who exist and act outside of medical settings. When I’m blogging about disability or training my service dog or having a phone conversation using a TTY, all of these activities are influenced by my having a disability, but none of them have anything to do with my being a patient. I am not getting medical care as I sit here and type this. I am living my life.

Even when, last night, I used my PICC line — a medical device that was inserted into my arm in an operating room — to infuse an antibiotic prescribed by a doctor, I was not a “patient.” I was and am a person living with Lyme disease, managing and treating my disease. I can blog, eat, train my dog, follow Twitter, watch a movie, and/or talk on the phone while I infuse. I am acting, not being acted upon.

However, when the visiting nurse comes tomorrow to change my dressing, I will be her patient for the half-hour or hour she is here. She will be doing to me — flushing my line, cleaning my arm, putting on a new dressing, asking me questions about my symptoms and functioning — but once she is gone, it’s just me in my home.

I am not the patient, however, of my personal care assistants (PCAs). I decide what needs doing and how it will be done. They are my assistants, not my nurses; therefore, even when they are assisting me to do what I can’t do for myself, I am not their patient or their client. I am their employer.

When People with Chronic Illness Use “Patient”

My feelings are less straightforward when I read articles, posts, fliers, etc., by people with my conditions who refer to themselves/us as “patients.” There are two main reasons why they use this term. One reason is the same reason that journalists do — it’s convenient. Saying “Lyme patients” is much shorter and less awkward than saying “people with Lyme disease.” It’s often used as a way to distinguish the person with the illness from others who might be concerned with the issue, such as “families,” “caregivers,” and “healthcare providers.”

However, there’s another issue at stake for those with my disabilities, in particular. Myalgic encephalopathy (ME), multiple chemical sensitivity (MCS), and Lyme disease all have histories of being treated as “not real” illnesses. We are told that our symptoms are psychosomatic. We are told the illness is a product of our personality or lifestyle. We are told there is no such thing as ME, MCS, or chronic Lyme, and the labels for these diseases carry these messages.

Our diseases are given mocking, belittling names: “Yuppie flu” or “chronic fatigue syndrome” for ME/CFIDS, as if the only symptom of ME/CFIDS is “fatigue.” The chemical industry’s name for MCS is “idiopathic environmental intolerance,” putting the emphasis on the first word — idiopathic — which means “of unknown origin” and removing “chemical” from the name altogether! The Infectious Disease Society of America, which has been prosecuted for conflict of interest in its relationship with the insurance industry, denies that chronic Lyme disease — persistent infection by the bacteria and parasites that cause tick-borne disease — even exists. Instead, anyone who is still sick after a month of Lyme “treatment” is said to have “post-Lyme syndrome,” a psychological response to illness.

In other words, words matter. I didn’t need a study to prove it, but there is one. Several years ago, a study about the impact of the name of CFIDS/ME was conducted. A mixed group of fourth-year medical students and medical residents were each given a case study of someone with ME/CFIDS, including symptoms, history, etc. They were randomly divided into three groups. All got the same case study, but the name of the disease was different for each group. One-third of the participants’ patient was diagnosed with “myalgic encephalopathy/ME,” one-third with “Florence Nightingale disease/FN,” and one-third with “chronic fatigue syndrome/CFS.” Those who received “FN” or “ME” cases believed the severity of the patient’s illness was greater than those who had the “CFS” case study. Further, 67 percent of those with the “CFS” study recommended psychiatric treatment for the patient, versus 53 and 48 percent for FN or ME, respectively.

I didn’t need a study to tell me that the name of my disabling condition is insulting and misleading, because I’ve lived with that perception since 1995. I have likewise lived with doctors and lay people discounting my MCS as psychosomatic, as a form of “hysteria” or paranoia. Again, this didn’t happen in a vacuum. The chemical industry has been actively working to discredit the experiences of people with MCS — often in partnership with federal agencies and the military — for a very long time. They have money on their side.

Then, I got Lyme disease, which I had previously thought was not a “controversial” illness. Once again, money has changed the perception of how this disease is perceived and treated — and therefore how I was perceived and treated (or left untreated). As in the other cases, the name of the disease, “chronic Lyme,” has been dismissed.

Given how much people with my conditions have been derided, denied, and denigrated, it is not surprising that most of the individuals and organizations who advocate for us — who try to raise awareness about the validity and seriousness of our diseases — focus on the potential severity of symptoms and systemic injury, and the medical proof of our illnesses — the brain scans, blood tests, or other objective measures of living with an organic disease. Almost without exception, those who do this work refer to us as “patients” — Lyme patients, ME patients, CFIDS patients.

One exception is advocacy groups and organizations for people with MCS. Some do use the term, “patient,” particularly those in the medical and scientific fields who are concerned with chemical injury and MCS. However, because most with MCS view our condition as having been caused by being poisoned or chemically injured, and our symptoms as the more severe manifestations of poisoning that everyone would have if the dose was sufficient, not all with MCS even consider ourselves “sick.” For many, it is the rest of the world that is poisonous, and we are just the canaries in the coal mine. Others do identify as ill, as patients.

So, when I see “ME patient” or “Lyme patient” on an educational or activist website or blog, I do cringe, but I don’t blame the person who penned the phrase. I think it feeds a need for many of my community to have our real sufferings — particularly our mistreatment at the hands of the medical profession — acknowledged.

Lymie, Canary, PWC

I much prefer, however, the lingo we have developed among ourselves. As with any subculture, we have created our own “in-speak,” which says more — and yet uses fewer words — than the awkward language of the professionals and the pitying, patronizing, or disputing public.

When I first got sick, the terms most used in the MCS and CFIDS/ME community were “EIs” for those with environmental illness, and PWC, which — adopted from the AIDS community’s use of PWA — meant “person with CFIDS.” Over time, those with MCS have mostly switched to calling ourselves canaries or MCSers. “PWC” has fallen out of use, but I don’t know of any neat replacement; sometimes it’s CFIDSer or CFSer or simply “ME.” (As in, “I’m an ME.”) In the Lyme community, there is consensus — we have the delightfully short, descriptive, and playful, “Lymie.” (One Lymie, two Lymies.)

None of this even gets into how I navigate the broader disability community — particularly the disability rights movement arm — using words like “sick,” “ill,” and “disabled,” interchangeably to describe myself. That does not always go over well, let me tell you!

But you all have been patient to read this long, dense post, so before you get sick of the topic, I will end, because five other people with chronic illness (who may or may not identify as patients) will be chiming in on this discussion tomorrow!

– Sharon, the muse of Gadget, and Barnum, SDiT

*Starting in 2012, PFAM will move to a monthly schedule, which will make it slightly more doable for me. However, hosts will still be required to give only 10 to 14 days’ notice for bloggers to write and submit a post on that month’s topic. Lead time is my real stumbling block.

QuickPress: Funny Dog & Resources for Learning about MCS

A quick training anecdote from yesterday:

I was working on “plate zen” with Barnum, which means I’m trying to teach him that all plates, bowls, and mugs are out-of-bounds for dogs. I am trying to teach this as a default behavior, which means I don’t want to have to say, “Leave it,” 80 times per meal. I want him to just know to leave all plates alone.

I used different plates, sometimes with a piece of food on them, sometimes empty. Sometimes I’d put them up to his nose, and sometimes I’d hold them in my lap. Barnum needs to have all the fine points explained to him. He apparently realizes that he’s a dog, and that therefore he doesn’t generalize well. (Gadget hadn’t read the book on dogs not generalizing well, so I used to think it was a load of hooey.)

Anyway, I switched back from a blue plate (yes, it was the blue plate special — thanks for asking) and put a clear glass plate in my lap. I waited to see if Barnum would back up.

Barnum waited to see if I would give him some clue as to what to do. I didn’t, so Barnum offered, “Chin,” and rested his chin on the plate in my lap. Then, like the gifted and serious-minded dog trainer I am, I fell out laughing.

It was so adorable: “Here, would you like me to put my big slobbery beard on this plate? Look, I’m really resting my whole head on the plate. Will you click me now?”

Barnum backed up in confusion when I started to guffaw. Having learned my lesson, we tried again. Barnum rested his head on the plate again. I burst into laughter again. Poor dog. We did eventually actually get to some real training, and he earned some clicks and treats.

I am very behind on emails and comments. I’ve been super sick for the past two weeks. I sent out a mass email telling people to please be patient, but there is a problem with my email, and I’m not getting all of them! So, I know at least one person didn’t get that.

Anyway, I am not apologizing, but I am explaining.

Readers have requested I write on certain topics. In many cases, I have written partial blogs in reply, but I haven’t finished them. In other cases, I feel so overwhelmed, I don’t know how to begin.

For instance, many of you have asked what you would need to be able to do to visit me. I am deeply appreciative of the interest you’ve shown in learning about MCS and less-toxic products! I wish I were more able to answer your questions in a timely manner.

Until I can write more, here are some links of resources put together by friends of mine:

  • Another great resource is the video/DVD, Secondhand Scent: Accommodating People with MCS. I’m biased because I participated in the making of this video, but I honestly think it is one of the best tools available to explain to people how and why to become more MCS-accessible. To order the video, please call the Boston Self-Help Center’s message line, 617-277-0080 (voice/TTY), and someone will call you back with details and arrangements.
  • Finally, another video/DVD about living with CFIDS and MCS is Funny, You Don’t Look Sick. This doesn’t provide information about how to become MCS-safer, per se, but before I got Lyme disease and got sicker, it was a pretty good description of my life (except in terms of severity). Co-produced by singer/songwriter Susan Abod, the movie is “an autobiography of an illness.” It gives you an eloquent glimpse into the life of someone with MCS and CFIDS. If you scroll down, you can watch a trailer for the movie on this page.

Indeed, Susan is finishing a very important second documentary, which she has been working on for over ten years, right now! (The trailer for this movie, Homesick, is below the one for Funny.) I’m very excited about this. I hope to interview her about that project soon.

Enjoy! I am very grateful for the requests for information, even if I’m not always able to keep up with them. Keep it coming!

– Sharon, the muse of Gadget, and Barnum, head-on-a-platter SDiT

QuickPress: Natural Disasters & CFS/ME

The US Centers for Disease Control and Prevention (CDC) has published a long paper that seems to be based on a conference about the adverse effects natural disasters have on people with chronic fatigue immune dysfunction syndrome (CFIDS, also known as myaglic encephalomyelitis, or ME, and chronic fatigue syndrome or CFS). This is quite relevant to my recent post about how I developed PTSD due to a natural disaster two years ago.

This is a lengthy PDF you can download with multicolored graphs and charts and bullet points, oh my!

The first 46 pages are not that useful and are somewhat annoying, but there’s some validating stuff after that. For instance, it lists various physical, cognitive, emotional, and behavioral symptoms that commonly arise from stress or trauma. The heading for one page is “In people with CFS, a natural disaster worsens all symptoms of CFS.” Below that are bar graphs that show relevant data.

Perhaps two of the most important points it makes are these:

1. Any form of stress is harmful — including long-term outcomes — to people with CFS,

and

2. People with CFS usually function better in an emergency and then get much sicker after the adrenaline wears off. (Referred to in the CFIDS world as “crashing”).

In fact, I’m going to type out the page that addresses this because I think this is a hard concept for most people to grok: A hallmark of CFIDS is “post-exertional malaise,” which means that starting about 24 hours after any type of physical, mental, or emotional exertion, the person with CFIDS gets much sicker (crashes). These crashes can last for days, weeks, months, years, or forever.

It was hard for me to understand when — many years ago — my best friend’s house burned down (she also has CFIDS), and I was also displaced at the time, and we both totally overfunctioned. In fact, she was more functional than I was, and her situation was much worse. We both did things we could never normally do, and we joked about horrible disasters being the cure for CFIDS. Of course, that did not turn out to be the case.

Page 57, under the heading, “Essentials of Disaster Response for Patients with CFS,” it says:

  • Animal studies demonstrate that the stress response takes priority over sickness response
  • In clinical terms this means that people with CFS will often perform normally in times of life-threatening emergency
  • Data suggest that the big risk for CFS patients is that disasters can trigger long-term declines in functioning.

So, there it is, folks. People with CFIDS have been saying it for decades, but now the CDC has published a document about it. Hopefully this will lend our experiences more credibility in the minds of our health care practitioners, our friends and families, and the general public.

It’s not a bad reminder for us to tell ourselves, either. Even though I didn’t lose power due to the storm, I have been more than usually exhausted, in pain, and cognitively impaired since the weekend. I have been trying to power through it (you may have noticed how many blogs I’ve posted, although they were not particularly coherent, pithy blogs), because I am ambitious, bored with being sick, and tend to judge myself harshly for “not being productive.” Good time to remind myself of what I so often try to convey to others: Being sick is a full-time job. When you have to deal with a stressor, like a PTSD flare, you’re putting in overtime. The illness doesn’t like that, and charges you payback. So says the CDC.

– Sharon, the muse of Gadget (floor potato), and Barnum, SDiT, anti-anxiety dog and bed potato

life w/lyme, mcs, cfids: a different kind of typical atypical

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.

Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit


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