Posts Tagged 'chronic pain'

Signal Boost: Migraine and Suicide

Kelly of Fly with Hope just posted Migraine and Suicide: What to Do when You Are in Crisis (Suicidal). Here’s the beginning of her post:

This week, September 4th through September 10th is the 37th Annual National Suicide Prevention Week. September also happens to be Pain Awareness Month.  In honor of National Suicide Prevention Week and Pain Awareness Month, I will be continuing the series I started with the post Migraine and Suicide. Please check in every day as there will be posts with contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide.

I’m so glad to see this happening. The people I know who are chronically ill who committed suicide were people who were living with chronic pain. I think that when you live with uncontrolled severe and/or chronic pain, a sense of desperation and unbearable suffering is more common than not. I know many people who live with chronic or severe pain who are or have been suicidal, and of those I know who have killed themselves, most were in severe, chronic pain.

There are a lot of reasons to discuss suicide in conjunction with chronic pain and/or migraines. One reason is that the actual  physical  suffering can be so severe that people can become desperate enough to want to end their lives, or more accurately, to end the pain they’re in.

Another is that there are harsh, judgemental attitudes in our culture about both suicide and chronic pain/illness. When someone is suffering emotionally or physically or both, they may have internalized cultural messages that they are “weak” or that they are alone or that they are “selfish” to feel the way they do. This creates a barrier to reaching out for help and support. It’s crucial that we remove the stigma from talking about both suicide and chronic pain so that when we are suffering, we can receive empathy and kindness which will hopefully ease our suffering and provide options other than (or at least, in addition to) suicide.

Another reason is that chronic pain rewires our brains. It affects who we are and how we think and feel. Migraines, specifically, are a form of neurological disease. Migraines are thought to be a form of slow seizure. So it makes sense that often, during a migraine, emotions are altered or heightened. I know that during severe migraines my moods and thought patterns are altered. I often become weepy and anxious and think strangely. When the migraine has lifted, I often don’t even remember what I was thinking or feeling, or if I do, it doesn’t make sense to me anymore.

Flying with Hope will be posting links and resources for migraineurs, those with chronic pain, and those who are or who have been suicidal. She’ll be talking about feeling suicidal herself and linking to others with chronic pain who have. I wanted to let you know about these resources for any of my readers who are or have been feeling suicidal, as well as for those who want to pass resources on to others, or for those who have suffered the loss of a loved one to suicide.

Kelly is asking those who have felt suicidal to blog about it. I’m quite sick and exhausted right now, so I’m not up to saying much, but to try to help reduce the shame and isolation you might be feeling if you have struggled with thoughts of suicide, I want to let you know that I have been suicidal. I am not suicidal now, but for several months, when I was at my sickest, I was in excruciating physical and psychological pain, and I did research ways to kill myself. I didn’t tell anyone I was doing that because I didn’t want them to stop me. I was having pretty much round-the-clock migraines at the time, but I think the primary reason for my suicidality was neuropsychological damage caused by Lyme disease and bartonella infection. I did not know at the time that I had these diseases and that they could be causing these symptoms.

There have been other times in my life when I thought about suicide, but that was the worst time. I feel very grateful that I am not chronically psychologically altered and depressed anymore. I hope I never feel that way again. At least I have lived through terrible, terrible times and know it is possible for life to get better.

If you are feeling suicidal, please talk to someone who will be kind and supportive. If you don’t think you have anyone like that in your life, you can talk to these people any time of the day or night, for free, who are dedicated to providing support to people who are feeling suicidal:

National Suicide Prevention Lifeline contact info:

Voice/English: 1-800-273-TALK (8255)

TTY: 1-800-799-4TTY (4889)*

En Espanol: Red Nacional de Prevención del Suicidio:  1-888-628-9454

You can also get support and information at their website, suicidepreventionlifeline.org.

*When I was suicidal, most of the time I couldn’t speak and I couldn’t use my computer, so the only way I had to communicate was by TTY. I would really have liked to have known there was a dedicated TTY line for a 24-hour suicide prevention hotline. The only hotlines I found, I had to use relay, and you really don’t want to use relay when you’re in that state, believe me! People with speech or communication disabilities, Deaf people, and deafblind people experience suicidal feelings, too. Please pass on all the links!

A different, and unique, approach to the discussion of suicide is at Write Me! Leah Petersen’s blog, where the 5 Minute Fiction challenge is held. Another part of her blog is called Suicide Notes. Leah says:

Prompted by many debates on various internet boards, my own experiences, and the comments of others, I have decided to take on the topic of suicide.

I’ve been on both sides. I’ve lost someone very dear to me that way, and I’ve looked it in the face myself.

It’s an ugly, horrible, scary place to be. And it’s almost impossible to understand if you haven’t been there. So people hurt. And people get angry. And they get judgmental. And people don’t get the help they need. And people make attempts and…

Anyway, it’s hard even for me to articulate in cold, clinical terms this particular issue.

So naturally I’ll retreat behind a fog of fiction.

Therefore, I’ve taken on a new project. A collection of flash fiction pieces called Suicide Notes.

Please keep these resources for yourself and pass them on to others.

One note: Fly with Hope’s tagline refers to Jesus, but there hasn’t been anything remotely religious or Christian in the two blog posts of hers I’ve read about migraines, pain, and suicide. So, if you are not Christian, please don’t let this get in your way; I didn’t find anything “Jesus-y” in her discussion or in the resources provided.

– Sharon, the muse of Gadget (my best suicide prevention treatment), and Barnum, SDiT and antidepressant

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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