Saturday, December 29, 2007

Neurological and Chronic Conditions: Fear

One of the side effects of a neurological and chronic condition is fear. And there are so many different ways and things to fear that it is hard to know where to start.

First is the “This wasn’t the way it is supposed to go!” fear. This one is a repeater and seems to have a few variations but basically it is that you had a pretty clear idea of what life was ‘going to be like’ and then you start to notice that things are quite the way they are supposed to be. And you go to the doctor and instead of telling you that everything is okay and yes you will go back to ‘normal’ he tells you that you have (insert condition here) and that no, things will never be “better.” Or if you are particularly unlucky and/or female your doctor will tell you it is depression or in your mind and this cycle of you noticing things aren’t quite what they should be and going to the doctor and (let us assume HIM) the doc sending you off again, usually with an antidepressant. But eventually you have a name for all those ‘things’ and a wave of fear hits you because you don’t really know what that name means, not really. I mean you might have heard of a school friend who had it but what does that mean?

Well, life moves on and you find that yes, life has changed but it still goes on and so do you. And that yeah; you’ve got a chronic condition/neurological/degenerative condition but hey, it is sunny out and you aren’t going to die/be bedridden/be debilitated TODAY. Only by now you are in a support group or seeing a GP who knows of your condition and someone mentions a particular effect/condition that ‘some’ people get and you think, “Christ, don’t let that be me.” But in the end you have your own particular bag of collected symptoms and limitations and a bunch of people have already told you, “Gee, I couldn’t live like that.” Because that is the Able Bodied world equivalent of saying something useful (along with “Have you tried…..”).

But then some day, you’ll be doing something, some part of your new routine, and you’ll just stop and think, “Is this it? Is this as good as it is ever going to get?” You’ll remember your life before diagnosis and all the medical things you didn’t think about which now consume your life. And while you know that these conditions just happen, that it isn’t your fault, that there wasn’t something you did, you have to wonder why it happened? And you look ahead, and you can see the future you had planned before diagnosis and the new future your GP told you about and they don’t line up very well. And a fear takes hold of you; that you will lose even more. And the thought of losing more is almost too much to bear. But then, what would your able bodied self say to you if they sat next to you on a bus now? This fear is about the future and now and wanting to go back and being that person who never worried about medical issues and how once touched by the hand of random and destructive chance, we don’t want to feel it again.

There are, of course, the immediate fears, which the longer you have a condition, the fewer they become. The first time you can do X. The first time you are too fatigued to lift a limb, or call for help. That realization and fear that you might have to wait for someone to find you. The first few brain fogs; the times you have said enough wrong words that you have to admit that this can’t be a coincidence. The fear then that you, the very essence you have trusted your whole life, may not be perfectly trustworthy anymore. The first major seizure, or incredibly painful muscle spasm, or incredible pain which stops you from sleeping and the thought that ‘this could be what it is like…every day.” Or heart erratic or falling down or having enough energy to get somewhere and then not have enough to get back. That first fear because “Shit! What is happening to me!” But then, whether it is needing oxygen, or cold packs, or an PA to come and prop you up and turn on the TV, the first incident becomes the second time until it becomes the 100th and while OTHER people freak out, you are getting kind of bored. Well, until a NEW thing happens and it is the first time for THAT particular new symptom (and you get that jolt of fear – and maybe a trip to the hospital – all over again).

There are the people fears; first that your partner and friends will leave you, will forget you. And as that starts to happen, as groups you were part of stop including you, you wonder how alone you will become. Not a pleasant feeling. But after a few months, those who are going have usually left and you have met a few new people and the fear recedes. But then all these PEOPLE, people you know nothing about are entering your life and are in charge of your home care, or whether you get disability rights or whether you get medical or assistive equipment. There seems to be no limit to these people, as well as the people you have to go through to get to these people and some of them, to be honest, you aren’t really sure up to the job. And as time goes by you realize that the days of being treated like a consumer are gone. That these people may screw up and if you get mad and write a letter or express your displeasure, then instead of like writing Tesco or Safeway, you don’t get a super apology; instead you are sent back to the SAME person, who now processes your paperwork even slower. You get a handidart driver whom keeps talking about “You cripples are dragging down the whole system.” But you DON’T call in a complaint because you did last time and nothing happened and for all you know, this is the SAME driver you will get in two days for your next pick-up. And you realize that there are now many, many people who can abuse you from slight to direct ways and there is very little you can do. That by simply never returning your calls, you can be delayed treatment and no one will care. And you realize that people, that society doesn’t see you the same way anymore, and THAT scares you. But you do get over it, and cope one way or another. Until you meet ANOTHER person who has power over you and hope inside that THEY at least will be competent at their job.

There is also the fear and frustration of helplessness over every law or legislation or paperwork that stands between you and your decision to make a stable life. There are times, when looking at the deadlines and layers of paperwork you wonder if this isn’t some sadistic survival of the fittest toward people with disabilities. I mean, when you don’t know what day it is and this has to be filled out, signed and submitted within two weeks of application at a particular office on Wednesday between 12:30-2:30, well, is this designed for people with neuro and chronic conditions? I am still waiting for a form to be filled out by my GP from 2006. Seriously. Oh yeah, and what about those “assessments” you MUST attend at time X or ‘you may lose benefits.’ Nothing like going to a room where someone will decide in ten minutes whether your life is going to be put through the wringer or not. Nope, no fear there. Personally I think if every 8th or 10th person going in just took a board and WACK, hit the assessor on the head, then THEY might fear the assessments as much as we do. Oops, did I say that out loud.

But maybe these fears fade as you get years into your condition. I hope so. My final fear is what I call “The Big Picture” as, unless your condition stabilizes, or every time it does, you start doing the math, and start projecting what your life might be like in, say, six months, or a year or two years or five years. This only happens when I have a run of bad; and I try to think what life is like at this rate in a year. Probably because when I get a few decent days I try to forget that I have a chonic condition. Except there are always those reminders that you aren’t the person you used to be and you never will be again.

As for me, I am terrified of my own body. Because you learn the new rules, the limits you have to keep within, and the drinks and food and rests you need to take to be optimal. If you had this kind of discipline before when AB you could have stayed on any diet program you wanted. But now, the cost is too high to push the edges anymore. Only sometimes, you do everything right and your condition fucks with you anyway. And just when you NEEDED it to be strong, you were doing everything right for three days so you go out tonight; but you can’t, you can’t get out of bed. No matter what you do, you can’t control it all the time; and no matter how much you want to go with the flow, there are some times when you wish so bad you COULD control it. You cry because what you had been planning for two weeks you won’t be able to do.

Why am I terrified of my body? Because there are too many things that go wrong. Right now the left hand I am typing with is a beet red and my right hand is yellow, the same color as baked dumplings. That isn’t something you get used to easily. Some days I look in the mirror and smile and only half of the face moves. I wasn’t very mirror obsessed as a teen but STILL I am pretty sure the smile goes on BOTH sides of mouth. I have heart erratics every day, for at least an hour. Even my doctor, doing a three-minute blood pressure test heard and saw the erratics shake my body. At least once a week I feel so bad that I would call 911 if I could reach a phone but I can’t.

As for me, the doctors are treating at least six months behind my symptoms. Normally that wouldn’t matter; with most conditions you will notice a problem, have time to talk about it for a few months and then take action. My progression in three to five months seems to be about 10 years of most other conditions. Unless something changes soon, it is a matter of weeks to maybe a couple of months before I start spending the majority of my time bedridden. The morning, which was the time I felt strongest, isn’t enough some days to enable me to shower using the bench. What used to take 18 minutes able bodied and 90 minutes seven months ago and 150 minutes three months ago now takes me up to 210 minutes: to shower, to dress, to groom myself, to take my morning pills and to have some form of sustenance. My speech, which used to have problems only when I exerted myself all day is now distorted on a daily basis. There is nothing I can do to stop or slow it. My doctors are still debating about tests they decided to do a couple months ago to determine that I have orthostatic hypotension: something which has only been determined five times so far.

Linda has said that being here, seeing me this week has helped her understand that I am not the same as a couple months ago when she was last at home for an extended time. She gets scared when I am too weak to move, and she has to move me, not knowing what damage she might be doing to my body so I can breath for now. She thanks the hospital bed, that it gives me what she calls "a chance" at breathing. And this is one of my better weeks.

She says she thinks of how much I have declined, how much more fatigued I am, how weak, when she is planning the trip to Japan. She says, "And we don't even know what you will be like in April." That makes me start crying. Because it is true. We don't know, but I want to try because even if I can only go outside for two hours a day, I will see 14 two hour snapshots of Japan. But somehow it is harder to hear your fears spoken out loud, and by someone you love and who loves you.

The fear comes and goes. Sometimes it hurts to look ahead. Sometimes it hurts to look back. You have a find a balance in the now, I think.

Fear doesn't define you; your condition doesn't define you. But that doesn't mean both aren't still there.


Katrin said...

"the days of being treated like a consumer are gone."

I honestly think this is one of the hardest things to come to terms with. No one gives a shit if you are upset with the level of service/care you are getting. Because it is what you are going to get. Period. End of story.

And if you decide you are unhappy, then you have to decide, am I so unhappy with this care that I need to find other (if that option is even an option, in some areas of service it just plain ain't) and go through that rigamarol all over again or can I deal with just being unhappy?

And complaints will get you no where and if you plan to just deal with the care and complain, the care will get worse. Your appts will go from 20min to 10min, your paid ride will come 30min late as opposed to 15min late, the phone call you need returned so you can get a referral that use to take a week to get return, will now never be returned, etc, etc, etc.

A 6 year old with a $1 who wants to buy a Hersey bar gets better service, than the disabled do in some cases.

wiccachicky said...

You have captured a lot of my thought process over the last two months of my own condition in this post -- I try to take things one day at a time, but it's so hard...

zara said...

Your post has touched me very much and I must have started this comment at least 10 times but everything seems so trite and I can not imagine being able to say anything that would help. Ironically, I suspect that is actually you, who by writing so honestly, are helping.


Gaina said...

((HUG)). There's not a lot I can say so I'll just hug you.

You get periods of feeling like this even if you've been disabled from birth. There was always a little space in the back of my mind that didn't take this disability stuff very seriously and if I just ignored it, tried harder and did what 'normal' people do then it would go away. So imagine my indignation when I realised at 34 that it won't. Last year I made a resolution to walk every other day for at least 20 minutes and posted a blog about it so all my friends could make sure I was sticking to it. I managed to fulfil the resolution but I'm starting to think I haven't done myself any favours by trying to do that. I certainly haven't become any more able (as I thought I would be) so right now I don't know when I'll feel able to walk next, but I'm certainly not going to stress myself over it. I'll just take it as it comes.

I recently had one of those assessment forms to fill in and just got a letter back saying that because I have one of the conditions that means I automatically get full points for incapacity, I could keep my benefit but they would review it in 2012. And I thought to myself 'oh crap, I am disabled aren't I? This is it'.

I think that's one of the 'dangers' of raising your disabled child too 'normally'. YOU might feel normal but 99% of the rest of the world certainly isn't prepared to treat you that way.

Let's make a resolution, you and me. I resolve to take each day as it comes, and not think about what I *could* be doing and how I *should* be acting. Let's not beat ourselves up trying to attain something that's not going to happen. Let's just act in the moment, go with it and enjoy the non-crappy bits as they arise without thinking about them ending. ;)


Elizabeth McClung said...

Katrin: I agree, the idea and realization that the people who are getting PAID to "assist" you can complain about you and get more action taken to sooth them than if you complain about them is a horrid feeling. And also, you know these TV stations with "consumer busters!" who jump in and go and interview the evil corporation who has abused some poor consumer - when can they do one for PWD?

Wiccachicky: I am so sorry that you are having to face these things and I hope you have a support network that is there for you. But yeah, there are still those times, alone - I think knowing that others go through them too makes a different - I hope it does.

Zara: I am trying to find and catagorize those unique aspects of life with a chronic/neuro degenerative condition and hoping that they aren't limited to just that, or just me. That there is more to CFS or Lupus or MSA than just the medical jargon. I hope this was of use to you, and not just painful. I don't think it is wrong or bad to be afraid or to have moments looking back or ahead and those feelings at those times. I think sometimes we focus so much on the physical hurt that we ignore the pain, confusion and fear mentally that goes with disability. And for me, at least, it comes and is there. Thanks for commenting (particularly if it took 10 tries!).

Gaina: Thanks. And thanks about finding out about the view from disabled from birth. I think the need to 'show progress' is hard, no one wants to be labelled as "will only go downhill from here" - yeah, I will try and agree to focus on what is and go with that. Or at least try, I tend to need something to look ahead to, though that will as oft turn out to be a disappointment, maybe the needing to look ahead itself is worth it. I don't know. I just want to say from Galaxy Quest: "Never give up! Never Surrender!" only, this isn't some outward foe, or some state of mind; this is my body and do I really want to go to war with it? Just because it isn't living up to my expectations?

Ms. Pet said...

This was a beautiful post and captured so much of my experience, I mean, it sounds, in many ways, sooooo similiar to when I was severely ill for four years. Your situation is different from my chronic illness, etc. but, well, I know you probably HAVE tried, but I need to say this anyways. I could hardly walk at one point, I needed help showering and dressing, I couldn't lift my arm up over my head, I had serious heart problems that sent me to the hospital more then once, and of course, by the time I got in, hooked up, etc. they'd be gone, until this last time. Took over five years before someone took it seriously enough to send me to a heart specialist. I had a couple small seizures, and my partner was sure I was going to die on her right there and then a couple of times. I had and still have the cognitive problems, which have been the one thing that has consistently gotten worse. My hands and feet would swell up ,I'd wake up in the middle of the night screaming, just screaming in pain from my legs seizing into cramps that R had get out of bed and pull them straight because I couldn't do it myself. I remember all the fear you have been talking about, the learning to make your goals alot smaller, define your successes in much smaller ways. I showered by myself today and dressed and put on make up. "Yeah Me." I remember all the doctors telling me it was fibro. It was awful in Nanaimo because, I had a dyke for a doctor. A 1970s Lesbian Feminst style of dyke who was a sexist, genderphobic bitch, who spoke down to me, treated me as an inferior and was so horrible, finally, I changed to the straight woman who worked in her office. I stayed with that bitch longer then I should have because I fell into my, "why do you all hate me so much? And treat me like I'm a "stupid female" when I'm Just. Like. You?" I just didn' thave the energy to change, and tried to "communicate" with her, but she just completely looked down on me. "Is this it? Is this my life? Celebrating having a shower by myself, not a single friend, never a dyke community that ever said, "welcome, we want you, you're one of us." YOur post brings it up all and alot of what I've been going through once again, but now I live all by myself and don't have a cat even. Anyways, one day that bitch gave me Wellbutrin to help me quit smoking. They also give Wellbutrin for ADHD sometimes, it being a stimulant. I was quite shocked as adding Welbutrin to Dexedrine, a stimulant already? I'd never heard of the two together. And so before taking them, I went and checked them out on They have a program where you punch in all your meds and vitamins etc. and it prints out any known bad drug interactions. Basically a low, med, high kind of thing. I punched in everything just for interest sake and it came back with Dexedrine and Zoloft being a major risk of seriously bad drug interactions. There was this list of like ten things, muscle cramps/spasms so bad, loss of muscle control including bowel control, heart problems, etc. Of course all in medical terminology so I had to translate each one. The warning said, "If you have even one of these symptoms, get to your doctor or hospital right away, and get off this combination. *pause* I had...eight out of ten. I took it to the Bitch of a Lesbian GP, highlighting everything, etc. and she said, "I don't think that's a problem, and refused to even consider it. I requested a visit to a psychiatrist she refused. That was when I finally wrote this huge "I have abc, of these symptoms, I want to see a psychiatrist who knows psych drugs, etc. and walked into the straight female doctors office. Sat down and started to read from the list, you know me, loooong! LOL She interupted me and said, "you don't have to go over to the mainland, we have a psych right here at the hospital (across the street from my apartment) why don't we set you up to see him? The other doc had told me there were no psychs here and I'd have to see someone on the mainland. I went and saw him, gave him the list and he said, "Oh my God! You shouldn't be on these two drugs together, we need to get you off of them ASAP." I'd been on them for almost five years by that time. I know you have a chronic condition, a terminal condition, but if you haven't looked into bad drug interactions in regards to some of your symptoms, please do. Bad drug interactions are the number one killer in American Hospitals, they have never, as of yet, done a study in Canadian. The Doctors book they have for the drugs, has side effects etc. but most docs don't know anything about how the drugs might interact with each other, and certainly long term. They don't study drugs th emajority of them, certainly not GPs.The pharmacists, have more knowledge but many times, they aren't get up to date about our symptoms, etc. and are cut off from our docs, etc. It sucks. I was literally being poisoned by those fuckers. I WAS dying, Size 22, walked with a cane when I could walk, try to walk for ten minutes speed walk style, I'd be in bed for a week. I was dying, my body was breaking down because I was being poisoned on two drugs that should never have been placed together, zoloft and dexedrine, or if placed together, watched like a hawk. A week off the Zoloft...I was walking, slowly, to be sure, but walking for exercise for two twenty minute shifts that week, hardly using the cane at all and my body not collapsing from it. Two weeks...I lost a size of clothing. Just from my body getting rid of the poison. It wasn't simply a side effect of the zoloft, it was the combination of SSRIs with a Stimulant medication, the two together, creating poison.

I wasn't cured. I still have fibromyalgia, chronic pain, fatigue, and the brain fog, etc. that goes with it. My health has deteroiated this last year again but still, Once off the combination, I've had one of those cramping sessions in all of four years, and that was during a BDSM scene! LOL I've had one heart situation, that finally, was looked after. I've always, since the fibro hit had chronic tendonitis as one aspect of it, but the chronic swelling of my hands and feet double at times, never returned, nor did alot of the things the doctors told me were simply "part of the fibro." I knew it wasn't the fibro, because what was happening, in none of the fibro books could I find the degree of almost instant loss of ability. I mean, I went from walking with a can sometime and doing a p/t chronic pain course, to it looking like I'd have to get a scooter because I couldn't walk a third of a block, in less then two weeks, or if I bent down to get a pot out of the cupboard, I couldn't get up without R pulling me up. All because these fuckers didn't have a clue, not a clue about putting these two psych drugs together and the Interactions, it would cause. If I'd been in the states, I would have sued their asses off, but not so easy to do here.

I don't know if you've looked into this. And I'm not trying to give you false hope, or say that your condition isn't real and all that. I just know that it's been proven that the number one killer in hospitals is drug interactions that go bad and that it's only in the last five to ten years, that the medical and pharmaceutical companies have really started to acknowledge that they don't really know how many drugs interreact with each other and certainly long term. So many of some of the symptoms in this post and their onset that you describe, are sooooo similiar to what happened to me. If you haven't, please go to and if they still have it, punch in all your meds, including alternative ones and see if anything comes up. And remember, you might have to take results to an online medical dictionary to translate. It's not 100% and it's not a cure, but if only 10% of what your describing could be the result of bad drug interactions, well that's a hell of alot of health returned, of ability. Again, maybe you've done this, I post this also for others especially those with fibro, who might be on zoloft and other drugs. They were killing me, they were poisoning me, because they weren't trained in this area, because the government doesn't believe you have to be a specialist or even have extra training to prescribe drugs that change brain chemistry, affect the central nervous system, etc. You go to a heart specialist for your heart, but anyone can prescribe you drugs that change your brain. "Duh!" I don't know if your on anything like this, but please if you haven't checked it out. DO. Just in case.

Your post is so beautifully well written and describes so well so much of my reality back then, and at times today. May I post it to a forum I'm on? I want to post it and say, "this was, this is, my reality. Stop bashing me because I don't always write or express myself well, sometimes, I can't even pronounce words for fuck sakes!" LOL *Pause* as always, you're free to post this or if it's too long, just keep it private! LOL And I'm planning on coming over soon, hopefully in January at least for a visit with Sabrina, before I don't have any money! *hugs* I'm sorry it's been so rough, but....the post was beautiful and really, really, validated my experience and I'm sure many others. Thank you for being willing to write so honestly. It's a gift to us all. *hugs*

lilwatchergirl said...

I want to quote every other sentence of this post and go "yep" after each quote. Although there's a lot here that I can't relate to, there's more that I can. And my condition isn't progressive, just chronic. 'Just'. Heh.

It's a toughie, fear. I'm starting to learn that it wastes my time and energy reserves - but that doesn't make it easy to ignore. Little things help, though. I was just watching season four Buffy, 'Fear Itself'. That light-hearted episode says more profound things about dealing with fear - specifically, the crippling fear of my illness - than any medical professional has ever been able to teach me.

Happy New Year, Elizabeth. Keep saying the things we all need to hear. You're in my prayers, if that doesn't offend you too much (and not in a "please make her non-disabled" way. In a "thank you for prophets of wisdom" way).

Marla said...

Hugs. Hugs and more hugs. I really hope you do not become bed ridden. I can't imagine the fears and pain you are facing. Please, despite what doctors are telling you and your body is telling you, please keep up the fight. Keep writing and give Linda all the love you can.

cheryl g. said...

Anything I can think to say just seems lame, so...


Lene Andersen said...

Yeah, fear. Fear is a fucker. I'm lucky - right now, I'm in a period of stability (and regularly feel like worshipping at the altar of Humira for it) and the fear's abated. I fought it hard for years - the bleak future, that sense of urgency ("if this isn't fixed RIGHT NOW, oh dear god, where will I end up...), the fear of death, while yearning for peace and trying, always trying to find hope and joy somewhere, because without some degree of hope (in whatever you want to hope for) is the only thing that gets you through.

I'm out on the other side of it. For now. And that's what scares me. What'll happen the next time I flare. I try not to think about it. Some days, when your body does it best to shove it in your face for the nth day in a row, it's really hard.

Thanks for posting this.

Anonymous said...

Thanks for posting this.

Have you ever seen the Seinfeld episode in which George accidentally runs over pigeons with his car? He tells his girlfriend that the birds broke the contract, that they're supposed to move out of the way. Lately I feel my body's broken the contract--I knew what to expect, and wait, why am I suddenly having problems with my foot and with constant illness? It's upsets me--it's not the way thing are supposed to go, not what I expect.

Jesse the K said...

Thank you for expressing these tragic realities so eloquently. I have never been able to put in words just how terrifying it is to be at the mercy of people who don't see us a fully human.

You've done that. Thank you, and take care.

Liz said...

That nails it exactly. Thanks for so eloquently hooking up the personal fears and the slow loss of control and independence to the political and human rights dimension.