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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15 Responses to “life w/lyme, mcs, cfids: a different kind of typical atypical”


  1. 1 Jen May 26, 2011 at 7:11 pm

    Just wanted to leave an encouraging note! It sucks that today is not one of the good ones. I am always glad to read your words and will be sending positive thoughts your way.

    I liked your recent post (a typical atypical day) about femme hair and putting on a little makeup. Love queer theory and discussions of personal style and butch/femme dynamic. Sometimes it’s important to dress in ways that make you feel good. 🙂

  2. 2 MiMo May 26, 2011 at 11:39 pm

    I’m here and I’m listening and I hear you and I will be here again whenever you are up to posting again.

  3. 3 Kimberly Kaye May 27, 2011 at 8:06 am

    Thank you for letting us behind the scenes. You are inspiring.

  4. 4 Brooke & Cessna May 27, 2011 at 11:46 am

    Thank you for taking the time to post this entry. It really gave me a glimpse into how tough it can be to do some of the basic tasks I take for granted – eating, socializing, etc.

    take the time you need to recover, we’ll still be here 🙂

  5. 5 Doris Wachsler May 27, 2011 at 1:44 pm

    Sorry you’re having an “almost stuck” day. Hope taking some time to recover will rejuvenate you. Glad Barnum is so tuned in to how you’re feeling.

    We hope you’ll be feeling better by Monday. We’re looking forward to seeing you after such a long time.

  6. 6 bluemoosestew May 27, 2011 at 2:17 pm

    Wow. I stumbled across your blog and am sitting here with tears streaming down my face. Your blog has really struck a chord within me. It has inspired me to be more thankful of the tasks that I am able to do each day instead of the ones I cannot. Also, reading about Gadget touched me. I lost my dog Allie five years ago. She was a companion dog, but…more somehow. To this day I weep when I think of her. I heard a big lab barking the other day and the sound dove straight into my heart and the tears began to flow again. You’ve captured my attention with your story. I’m listening and I am thankful to you for telling your story.

  7. 7 Karyn May 27, 2011 at 8:44 pm

    Hi Hon,
    Somehow I needed this today. I needed to see how good my life is- to be grateful for where I am at even though to me its been a whole week of stuck brought on partially because the sun came out and I did not listen and partially because of an idiot behind the wheel.
    I know you will give yourself what you need to get unstuck as I’ve been forced to do this week. Its hard that we have to live the stuck days as reminders that we are not super woman. REALLY we ARE NOT! I want to post in my blog more but I made the decision to give my spoons to the other things this week. I want to tell you and everyone else just what its like to live my life with MCS, incomplete Quadriplegia, Deafblindness but instead I am using my spoons reading your blog, reading the comments, making my own and being grateful that I taught Thane tasks that some people asked me if I really needed him to do that or was I doing it just to keep his mind busy.
    No matter what you feel or think about your inability to be consistent right now with Barnum, you are doing a great job. Its during times when we are at our lowest that these sensitives (as I like to call Barnum and Thane) just seem to know what we need.
    I wish a speedy recovery and LOTS of good sleep for you my friend- HUGS

  8. 8 Sharon Wachsler May 27, 2011 at 11:12 pm

    Karyn,
    Oh dear, sounds like things have been happening out your way I don’t know about. Did you and Thane have a close call? Or a more-than-close call in traffic? Eek.
    I had to laugh at your reminder that we ARE NOT SUPERWOMEN. I think we do try to act like it sometimes, huh? And then, payback!
    Glad you are laying low, too.
    I’m being careful, and it’s paying off.

  9. 9 Aris Merquoni May 28, 2011 at 12:32 am

    Hey, I’ve been reading your blog for a while now but haven’t commented yet, and wanted to just say thanks for sharing all of this with us out here on the interweb. And to keep rocking, because I think your training stories are fantastic–I have never been a dog person, so I find dog training to be a special kind of magic. Thanks for all the stories!

  10. 10 Kat May 28, 2011 at 2:08 am

    We love you too Sharon. Rest well.

  11. 11 Karyn May 28, 2011 at 5:55 am

    YUP its been a struggle here too. I’m having a rare insomnia night so decided to try and catch up a bit online.
    I’ve updated my blog with the real situation- not as vividly as this awesome post of yours- but FWIW it tells what I needed to say (at least at the moment)
    Now before Thane disowns me, I’m going to take this worn out body back to bed and hope to find some semblance of sleep as I don’t feel much like super woman this morning- only like a limp ragdoll thats feeling the brunt of PAYBACK.

  12. 12 Sharon Wachsler May 29, 2011 at 12:19 am

    Thank you, Aris! I get excited when I get a comment from someone new. After all, we have no idea who is out there on the interweb! (Did Stephen Colbert or Jon Stewart coin that term?)
    Anyway, thank you!

  13. 13 brilliantmindbrokenbody May 29, 2011 at 3:01 pm

    I’m having something of a splat day. Last night, we went out to dinner with my boyfriend’s parents, brother, and sister-in-law. It was nice, but I’ve been on the edge of doing too much for a while now, and that was the straw that broke this camel’s back. I had an insomnia attack last night. Was supposed to get up at 9:30 or 10 today to socialize with them, instead I couldn’t be gotten out of bed until 1, and they left at 1:30. I feel guilty for not seeing more of them, and annoyed that I missed out on lunch at a favorite place. Oh well, at least I got to give them the blanket I made for my future niece or nephew, and they really liked it.

    I know I only have a couple more hours of being up today. I am very grateful that I can usually still read when I need to be horizontal. My doctors all tell me not to read in bed, but I don’t have much choice in the matter. When my body says it is time to lie down, I don’t have anywhere else I can go, because I need the right squishiness and the right pillows and the level surface (instead of say a couch, which tends to be lower at the back than the front).

    I just feel bad for Hudson, who often gets trapped in my bedroom. Perhaps tomorrow, we can make it for a short trip to dog park. Fortunately, it is only a few blocks away. It makes me feel very feeble that we have to drive there; it’s just too far for me to walk. I hate that feeling, that sense that I should be able to do something that my body just isn’t capable of. The guilt over not being able to live as greenly as I’d like.

    ~Kali

  14. 14 Sharon Wachsler May 29, 2011 at 11:58 pm

    The “trapped in the bedroom” issue is one I had with Gadget after I got Lyme, and now with Barnum.

    With Barnum I am using the Premack Principle, where I open the door to my BR and release him and say, “Go play!” And he trots off. After a bit, I call him, give him a yummy treat, then release him and say, “Go play!” After a while, he starts coming back on my room on his own. Then he WANTS to be in my room.

    Love the power of Premack!

    Sorry to hear about your splat day. I think I might have one tomorrow because I did two training sessions already with Barnum, plus some high-speed tennis-ball fetch using the Chuck-it! AND I wrote two very short stories for an anthology a friend is editing, and I still have to do my PCA to-do lists for tomorrow, AND get up at a reasonable hour (noon or 12:30 because my parents are coming to visit and to take my van/powerchair to get my chair repaired. (Crossing fingers and paws.) Well, now who’s blathery?

    Oh, I don’t understand why your doctors don’t want you to read in bed. Is it the reading? Or the bed? Or what?

    I think I will post the Tips here periodically, but just in case you didn’t see the other comments on this, you CAN just go to the page and read it, without being a FB member or “liking” or anything.

  15. 15 brilliantmindbrokenbody May 30, 2011 at 3:16 pm

    I’m torn about doing things like that for a couple of reasons, the primary one being that my service dog school puts a huge amount of emphasis on never letting your dog go away from you. The only times we’re supposed to be off-lead are when we’re playing, preferably in a fenced yard. Now, I don’t hold to that because Hudson is so attached to me that he doesn’t tend to want to wander away from me unless it’s to see other people. I guess the other reason is that I’m used to seeing what he’s doing all the time and I worry that he’ll get into something or knock something over and harm himself. Pretty silly when I look at it objectively; I mean, my parents dogs have had the run of part of the house for years and the only time they really managed to endanger themselves was when they got into a bag of dark chocolate truffles one year around Christmas. Out of 8 years of them having the run of about 1/3 of the house, that’s really not bad. And I know Hudson has had it drilled into his furry little head that he only gets to eat what I give him, so I’m not worried about him pulling something like that (much).

    As for the reading in bed, it’s the in the bed that’s the issue. With my sleep dysfunction, I’m supposed to only be in bed for sleep or sex. I have insomnia/’delayed sleep onset’ and alpha-delta sleep (aka alpha wave intrusion into delta sleep, which basically means that for reasons medicine hasn’t figured out, my brain starts making the kind of brain waves you make when you’re awake when I’m in the middle of sleeping. It’s not terribly uncommon amongst people who have fibromyalgia, and part of the reason I think I have fibro even though nobody wants to diagnose it). But it adds up to a lot of behavior modification the doctor has recommended to manage sleep – the room has to be kept dark and cool, I’m only supposed to be in bed to sleep, no TV within an hour of when I want to sleep (and none in the bedroom), regular bedtime and wake-up time, no caffeinated drinks after 4 PM (preferably none after noon), meditation before bed, specific limits on when and how long I’m allowed to nap, all kinds of things. I’ve found that even rigidly obeying them all has limited effect on helping me sleep, so I play fast and loose with them and obey the few that do actually seem to help as much as I can. The main one that does me any good is set bedtime and wake-up time, and I can only obey that one inasmuch as I am not badly splatted and not having insomnia. Well, and keeping the room dark and cool, but I figured that out a long time ago.

    I saw the other comments. I’ll probably look at your fb as often as I remember, but I often don’t remember to even check the blogs of people I’m friends with, so who knows how often that will work out to be.

    ~Kali


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