Sunday, March 09, 2008

Status report (going down...abandon ship!) and pondering on "family support"

Two parts to this post: One is about me and that I am in dubious shape and could use some, I dunno, TLC? And the second is about support, family, partner’s family and odd family reactions.

Okay, I got up this morning and was going to play badminton, as I had been too ill to do any other exercise this week. Only, I was not a “well woman” even by MSA standards. Linda pushed me there and I am not sure how I looked BUT not even the friendly director would play with me…or come near me. Since I could barely raise my arm and hit the birdie, even once. And if I missed and it fell, I looked at it. I asked Linda, “How bad am I?” And she said, “Your face is….grey. You don’t look good AT all.” Well, I warmed up enough to get some adrenaline going, and played a doubles game and then went to the accessible toilet because of course, like rats fleeing the infested island, everyone was leaving (meaning, ow in the stomach). After 30 minutes I went out and played for another 25 minutes and then had to be pushed home. I was supposed to do ebay today, since I had 25 lots of Manga on and wanted to do 50…except that, it was straight into the bathroom with me and my Gatorade. The pain and weakness were pretty intense (like "put on these goggles to see the nuclear blast" intense), and there I stayed for about three hours until Linda came in and found me sort of wacked out mumbling, “I’ve gotten so down I can’t get up.” Meaning, I thought my body was in some form of failure. I had drunk three Gatorades, to keep up electrolytes and liquids even though there was nothing left…do, as it were, it didn’t stop the God awful cramps which had me moaning and screaming (Linda said: "I felt like I was some expectant father out in the waiting room"). Well, my whole body was shaking and Linda sort of half carried me to bed where I was in shock and my teeth chattering and my whole body quivering and fainting every few minutes as I kept saying, “So low, so low, can’t get up.” And I told her that this was probably the start of fecal incontinence (You know: always look on the bright side of life!).

Linda was like, No! There is no ebay for you. And I lay there and slept. Actually, I had woken pre-badminton at 5:00-6:00am in such pain that I needed the opiates and the muscle relaxants and squeezing a bear to hold on until they kicked in (which should have been a “this might not be your BEST day” indication).

I woke up at 7:15pm, after Linda took a call. It was from her parents. They do not call…well, almost never so I asked, “Is everyone all right!” Because I thought this was the, “Your father had the heart attack” call. I asked, “Is everyone alive?” And she put her hand over the phone and stuck her head out and said, “Yes, everyone is alive….except the calf, it just died.” And I sort of blinked and did a “Oh these FARM families” because this was what used to happen every year, 50-80 calves and they call every time one dies. Yes, I know it is lost stock and all that but…..

Anyway, I had done some prep for ebay yesterday so put those on, along with three Linda had done while I was in the bathroom (the rest of the time she read a ROMANCE – oh well, did I want both of us to be in pain? No.). So that was eight lots but by the end which was 45 minutes later I was feeling not very good and got out the thermometer and sure enough I had a 2.5 degree fever. Which means my autoimmune is compromised or (what I believe) that my autonomic system is SO low, and SO run down that it simply can’t sustain anything, even basic body temp or maybe too tired for white blood cells or to cool the body off, I don’t know. All I know is my body has crashed three times in less than a week, and this is the worst I have been since 11 months ago. So yeah, let’s say I have pushed so hard….I fell off a cliff. Does this mean I am totally dedicating myself to recovery or that MAYBE, I am already thinking, “Yeah, but if I go REALLY slow, I could do those 8-12 ebay manga lots tomorrow?” Well, you provide the answer and we’ll see how well you know me.

I would really like to be better because body shaking, fever with no infectious cause and looking grey and like I might ALREADY be dead is a) not fun and b) what zombies usually look like right before they BECOME zombies. Any ideas?

Okay, second part which came about because of Linda parents, who called to let her know about every obscure cousin with a disease or illness or cough and know that I am almost certainly terminal and have yet to send a damn card. Though, after more than a year Linda said they did at least ask how I was, or rather how she was dealing with how I was. The thing is, Linda’s mother is a caregiver, that is how she makes her money. So why is she calling up telling Linda that a) her distant cousin got MS because of a skin infection (wacko!) and b) not wanting or sharing what it is like being a caregiver.

I can almost understand dissing the partner (me) since her mother still won’t acknowledge that we are “together” at her church though EVERYONE knows. And she did say she had lunch with a couple who told HER four years ago that they knew and were okay and how last weekend for the first time since then, she went back out to dinner with them and could “talk about it” (about what? Our wild sex? In your basement? – no, her basement was tick infested and I have a phobia about a tick getting in THERE).

So support and the lack thereof. I don’t know how it is with other people but why is it that “family” is so important and stuff except when it comes to disappearing with a mysterious illness. Or why are there several of the people Linda works with who ask about my health and how the weekend went, and did I have a good day, more than either my parents OR hers combined?

Linda says that when her parents last visited (when I was still well), and she pressed them on, why exactly do you do things and buy things and send cards and do birthdays for other family members and not for me. And her mother said, “Out of sight, out of mind.” Because Linda moved in with me, 14 years ago and moved away from the 100 mile proximity, they haven’t been very present in OUR lives (while they do regularly pressure Linda to pay to come back because person X is having a milestone birthday or a family reunion) – though I did ask Linda tonight, after talking about this, “So I can see they card they sent you for your 30th birthday?” She gave a wry grin. However, she says that now that I am sick, it is more obvious, as if I WAS within driving distance they would HAVE to do something (family obligation) whether they “agree” with our “lifestyle” or not. Which makes it easier to NOT initiate communication or acknowledge that Linda or I might be having a hard time (like sending a card), hence my certainty that someone had died…because they called. And something did…the calf!

As for my parents and relations who did live close by, are they really so upset about my “lifestyle” anymore? Because it seemed that they were more upset that I wanted assurances about wheelchair accessibility for the Xmas meeting than whether Linda and I were still together (the whole, “She always has SOME demand!”). Maybe the whole “lifestyle” thing is just a way to excuse themselves from not connecting, so that they can KNOW or hear that I am sick, I am very sick (though how much is accurate since it travels a weird family grapevine that is probably six to nine months out of date), well, I mean, they can say, “we were never all that close anyway.” I dunno. I guess I can still remember that Linda’s parents were so willing to stick up for her and fly her back to their province when we came “out” and thus got thrown out of our church, if she wanted to leave me. They would pay for her to move and pay for her to stay there and start a new life. So, “taking care of family” does apply, maybe, unless she is in hardship or burning out taking care of me? Or is it that in “taking care of Linda” with that offer they were actually “taking care of themselves” by silencing that scandal and getting Linda back into the family’s hetero fold?

Linda says reading this, “Oh….that’s OLD news.” And I said, “Well, they haven’t offered to fly you back when I die…what does that mean?”

She said, “I dunno.” (then in a sub-whisper) “they don’t want me anymore.”

I don’t know why illness and disability and care giving makes us alone when we so often need that support the most. I did notice that when Linda’s parents thought I had like MS or some other disease, there was offers of building a ramp into their house and that I would be “Welcome” to come visit. But once the “terminal” label was applied, that disappeared.

Linda says that she thinks it is less about my type of disability, but about them not wanting to invite us at all (personally I thought MY version sounded more optimistic), as in, there is no reunion so Linda (and I as her baggage) am not needed. She finished with, “But, I’m not sure if that is how my dad feels.” Her dad is more openly protective of us, and our lives but is one of those men who spends time on the field and is quiet in the house. Also, he was the only person who called, even though it was before 6 a.m., because of some “home remedy” he had read about, and was sure it would work for me. It showed to Linda that HE was thinking about it, and cared, cared enough to call RIGHT AWAY, even if he doesn’t know how to show that feeling in the day to day and week to week support. But then, my feeling is that in a farm culture where you don’t go around sharing how you feel each week, coming up with a SOLUTION is how you show you care.

Our experience is so limited and unique that I don’t know how applicable it is to others. It is just hard to talk to relations and feel like you are on one planet and they are on another (involved in the dozen mundane details of relatives lives who live near them: who got a foot fungus, and whose tractor is in the shop). And for me, to remember that, yes, most of my relatives are living only a few miles away or closer and that my care workers fight for me, call up the home care managers for me, care about me and demonstrate it in ways my own “blood” has not or can not.


cheryl g. said...

Hey Sis I need your postal code...

You both need TLC and I am offering. As for ideas... my idea is that you use cool packs to try and get your temp down and sleep a lot. See if that will bring about a system reboot. Keep up with the fluid intake too.

Linda - you also need to sleep as much as you can, eat right, and keep up the fluids.

You've both been working very hard towards your trip goals but that also means you're stressed and tired so take care, please.

(Not bad for bossy big sister, huh...)

Hermes said...

I see this all the time, a lot of people seem to think that disabilities can be caught and avoid former friends / parents / relatives and leave them to the care of others. No doubt in their own minds they have some what they think is a valid excuse. Hope you soon feel better than you do now at least.

Elizabeth McClung said...

Cheryl: WE are using the pack on the neck and one on the body and lying down and sleeping more. And lots of fluid, which seems to be coming out, one way or another (ick!).

Yeah, tell Linda, she is staying up way late and then not taking care of herself enough. Yeah, bossy. But that's what is okay sometimes.

Hermes: Well, I can't say, "I'm glad" but I did think it wasn't just us which is why I wrote about it - the whole, everyone comes up with a good reason to not think about you. I think maybe they fear that if they show any concern they will have to get involved, which isn't so, but we can't help notice LESS contact.

Tom P. said...

You sound like my wife with your inability to just sit and rest. Michel just had surgery and the doctors told here that she needed to take it easy. So where do I find her at midnight? On her hands and knees cleaning the grout in the bathroom. "It was grossing me out. Except I can't stand up now." And of course she popped her stitches.

Linda's dad sounds like a typical guy. I used to think that when my wife was telling me about her problems that she was doing it because she wanted advice or help. I have learned over the years that it is a gal thing to just want to talk to someone about your problems. So I have learned to commiserate and nod with love and understanding. :)

Dawn Allenbach said...

Farmers. I totally understand.

Clueless blood relations. I totally understand.

We should email. Probably not today as I'm crazy crazy busy -- as opposed to crazy busy, when I have time to email. I'll try to email you tomorrow. Remind me to ask you about editing a book.

Lene Andersen said...

alright you two. It'd be nice if you were both alive to take that plane to Japan. So sit! Rest. Call in sick to work, appointments and anything that should be done. I hereby prescribe a minimum of 24 hours of doing nothing but drinking tea, sleeping and watching idiotic movies.

Or must I come out there and sit on your myself?

Daisy said...

I had a friend who always dipped into romance novels when there was a personal crisis. :) She said "It gets the job done, okay?"--I never asked her "what job?" but always wondered!

Yes, what Cheryl said, and drink lots of anti-oxidant juices like blueberry, pomegranate, acai berry, and blackberry! (Odwalla is very good, if they have em in Canada!)

ms bond said...

Lots of love and positive thoughts are being sent your way. And listen to the people who are telling you guys (both of you) to take care of yourselves and relax. Please! I'm thinking of you.

FridaWrites said...

I know individual bodies are completely different, but are you sure you aren't throwing your electrolytes off in the other direction (too much rather than too little) by drinking so much Gatorade? Just an idea--your specific medical situation may require a lot more.

My theory about families is that some people will find excuses to control or outcast other family members no matter what on any matter of personal difference, not just sexual orientation, though that bias certainly exists. I.e., if it weren't the current issues, it would be something else if you didn't live exactly as they approved. I've been criticized for not working and bringing in money, then for working and taking time away from kids, then for working part-time or flex schedules, for example. I get criticized for what I buy, for what I don't buy, etc. I was criticized for breastfeeding and using a midwife and for attempting to be an environmentalist (difficult in a materialist family), though my sister-in-law was met with approval for all of the same decisions. It's all an excuse for not liking me because I don't think as they do.

As far as rejection people with disabilities or illnesses go, I think people are afraid to think about their own mortality or deal with the pain and difficulties and mortality of other people. It's no excuse, but it's why that happens.

coopernicus said...

I must be a can ones lifestyle take precedence of ones health? Sometimes people's inability to cope and care amaze me...knuckleheads..take care of you..

Elizabeth McClung said...

Tom P: Well, yes, there is always so many things from before I got ill/disabled and guess who has a LONG mental list of things they need to "catch up on" - maybe I should mentally move on and realize, hey, the world doesn't actually end if everything doesn't get done (well, it FEELS like it does). I think I like Michel from your anecdote.

Yeah, Linda's dad doesn't talk much but like, when someone diss us at his church he got quite, vocal (for him, I mean the guy spends 16 hours in a tractor not speaking). So while the advice was about as useful as "Yoga will cure you" we did find out that, hey, he WAS thinking about us and cared.

Dawn: We SHOULD email because I am up for that script thing, I am been trying to think of ideas, when I am not hallucinating.

Lene: See I did have the "rest for two weeks for optimal health for Japan" but it is on the list to start on THURSDAY. I still have to finish the rest of the list before then (little joke, don't beat me!).

Daisy: As for romance novels, you and me both - Linda is incredibly picky with her authors and books but NEEDS to have one or two around to do whatever it is they do for her when she needs to not be here right now.

"pomegranate, acai berry, and blackberry" - see, now I know you live in California, where stuff like that might be on the shelves. We didn't have many soda flavors in Canada until recently (and some provinces still don't). I think we got Spite with lemon - is that a new one? So getting pemegranate juice.......???? But I put it on Linda's shopping list and see what she finds.

Ms. Bond: You're back - how was disneyland. Thanks for the care and concern.

Frida: Well, not to be gross, but when my body decides to get "Everyone out" it keeps cramping whether that is possible or not, so I have to drink liquids but also electrolytes to keep my BP stable during the process as my body is already leeching water from whatever organ it can ("Hey liver, gimme that!").

As for alienation - yup, it comes down to "You don't think exactly as I do so I don't have to care about you" or something like that. Double ditto on the mortality front, even my careworkers don't like it that I am THEIR age but in MY condition (and haven't smoked, or done drugs, and exercised, etc).

Coopernicus: Dunno, but I have a feeling that if I told them that were aren't having as much sex as we used to now that I am ill, they still wouldn't come running. I think it is just a conveniant excuse.

shiva said...

Not much i can think of that would be helpful i'm afraid :(

But i do remember in one of your fairly recent posts you saying you had been given a powerchair, but not used it. Maybe it would save your energy to use that rather than the manual to travel to and from the gym, park, etc... even if only in the run-up to Japan, to avoid the kind of level of crash that might stop you from being able to get there?

Of course that might be completely useless suggestion, i don't know...

Your posts like this always want me to offer some sort of practical help, since i'm unemployed, physically close-to-OK and being of use to someone else would help my mental state massively... then i realise i'm the other side of a very large ocean from you :(

Anonymous said...

The situations are very very different but I know that I struggle with keeping in close contact with my mother who has recently been diagnosed with Alzheimer's. Behind my sometimes silence: grief. Yes, my mother is still alive, still functioning in some ways, but much of the person I love is gone. I grieve for her losses and my own. Grief for living tends to create silence.

Neil said...

Hola, squirrel queen!

If things aren't staying down long enough to do any good, why not try ginger ale instead of gatorade? It's probably cheaper, the ginger might help you stop sending it back, and to me it tastes better. But then, I hate Gatorade... Okay, I'm prejudiced. And your mileage may vary.

God help you if take everyone's advice here. :)

But BOTH of you: PLEASE look after each other and yourselves. I don't want you too stressed a tired to enjoy Japan.

Anonymous: You have my sympathies for both you and your mother, O invisible one. My mom died last year from a stroke, which, unbelievable as it sounds, was a blessing. She was diagnosed with Alzheimers in 2001, but was not properly in the world for at least two years previous to that. it was complete hell watching her, still relatively healthy, unable to remember what day it was, or who she was talking to. Alzheimers has to be THE worst way to go, and I wouldn't wish it on my worst enemy. Get thee to thy local Alzheimers group, friend, and get some support for yourself. You need it!

Beth and Linda, all my best wishes for you both; I hope today was better, and the body's keeping things going in the right direction.

Zen hugs, and wishes for lots of sleep at the right time

A Bear in the Woods said...

We used to raise horses.
I never missed a birthing. We even would take them into the house, but just for brief visits, mind you.

Livestock people...

Elizabeth McClung said...

Shiva: Your suggestion about the powerchair is actually the kind of obvious and logical solution that would never occur to me. Now I have to tell Linda so she will make sure to get on my case to use it more in the coming weeks (when my will to try new things fails).

Actually just listening and knowning that you are the type of person who WOULD do something is of great worth to me (so I hope it is to you) - and besides, you spotted what equipment I HAD but wasn't using!

Anon: I am sorry for your situation and I do recommend getting into a group like Linda is in for people in the same situation. But actually it is very understandable, becuase you are grieving the many, many little deaths -

my own mother did the same (grieving the "death" of able bodied me), which I can understand, just not while I am THERE - cause, you know...still technically alive. Which is why places like grief groups and co-support groups are a good and non-judgemental space.

Neil: Hey, for some reason, I am feeling that you are down. Don't know if you are but if you are, I'm thinking about you.

Actually Gatorade or Poweraide is not my choice, it is the way people with Shy-Dragers and autonomic failure regulate blood pressure to stop our organs getting damaged. Believe me, I am VERY TIRED of the taste of gatorade, it is just, no sodium, no control over my BP. SUCK!

But true, Ginger ale may be more settling for the short term, so I will try that and the radical idea of...I dunno, taking a WEE break. I did have a slight return of the fever in the afternoon but better or rather not in the bathroom, though it took an hour to shower me, but able to actually stare MEANINGFULLY into space.

Bear in the Woods: Well, I hope you saw Linda's video from a few months ago about her visit last summer to the farm as it had a 2 day foal in it. I hope it didn't come in the house until all the goop stuff was wiped off. I know that the theory of miracle of birth but I figure when you are a cattle rancher, it gets old after say, the 20,000th? Doesn't it?

Raccoon said...

"Terminal disabilities can be catching." "Your lifestyle is an abomination, but we might still be able to save our daughter." And, yes, "out of sight out of mind."

That's what I read. Unfortunately. In person, they might not act that -- they might even think you're a great person. But when you're not there, the doubts arise.

You posted this last night, so might we suspect that you relaxed today? Probably not. Somebody suggested Lisa take a sick day. Not such a bad idea.

Neil said...

Hi again:

No, dear Beth, I'm not feeling down; just a momentary lapse - no offence meant or feelings hurt, please Anon! - while I read the reply above mine, and was briefly reminded of my mother's slide into that particular hell that is Alzheimers.

Actually, the last couple of weeks have been *very* good; I've been in a great mood. And probably too disgustingly cheerful to be around, despite last week's pulled thigh muscle. No, nothing weird, other than that embarrassing incident with a drunken tiger, a trapeze, and a tube of crazy glue... I just slipped on an icey sidewalk and DIDN'T fall. Tug, strain, limp for a few days, now I'm fine.

My father-in-law was a farmer. He was a man of few words, and those very quiet ones. My wife only ever heard him swear once in her life, and that was in the punch line of a joke that could not work without the foul language. But I learned very quickly upon meeting Maurice that wen he did speak, it was worth listening to him. Linda's father sounds very much like him.

Okay, gatorade for electrolytes and sodium; logical as long as they're not, er, evicted immediately. Sorry, speaking metaphorically for the sake of the squeamish on board. :)

I've had to sip stuff too, just to give the stomach something to toss back. At least we're on the same page there. Unfortunately for both of us.

And a friend's brother died of cancer last year; the wife of the deceased refused to let any of his family visit during his sickness or attend the funeral. She felt she had married beneath her station, and thus rejected his family. So please understand that it's not necessarily your lifestyle that Linda's family is rejecting. Though I admit that very likely is the case, it CAN happen in all walks of life.

Thinking of you, sending zen hugs, good thoughts and best wishes to both of you.

yanub said...

Ah, lack of family support. Isn't it strange how we reflect the lack of support we get from families on to ourselves, as if we need permission from them to take care of ourselves?

But you don't need their permission. Not from Linda's family, not from your own. You deserve to be treated well by yourself. I hope you do start using your electric wheelchair. And every other shortcut and tool you can get hold of, so that you can use your energy for the things you most value.

I'm glad you have a bear to squeeze. Having a stuffie is the most useful pain and frustration reliever there is, no matter what age we are. Ask your bear's opinion. Though I'm sure it will be what stuffies always say: You are wonderful and ought to be treated with TLC. No, you are not screaming too much, or crying too much, or feeling too sorry for yourself. You are just right.

Elizabeth McClung said...

Raccoon: Well, I think in person there are those who might not say anything, those who have lived in big cities and are OKAY with us and the ones who spent time on the farm and at church and actually blurt stuff out. And quite honestly if anyone starts up on the connection between my "lifestyle" and now I am disabled, I am going to belt em.

If "relax" means, did a roll outside and put on 11 ebay lots of manga than you are correct! Actually heart erratic all day, much, much worse with fever after nap, and then had to go on oxygen or go to hospital tonight, so did oxygen and hoping to get through the night. But this IS actually better than yesterday!

Neil: Sorry, must have misfelt the vibe. I cannot be unhappy at people being happy - that just seems mean, who wouldn't want to be happy - however whistle for 45 minutes while we are stuck in a elevator together and you might have some injuries.

I do respect Linda's father, he seems a quiet and gentle man who loves his farm, his animals and the people around him. I am not surprised that he opened his heart to what he felt instead of someone's biblical interpretation. And I am thankful for it.

Well, I am also a deep down Townie, and when they asked me if I wanted to "Throw bales of hay into the baler with them" many years ago I am sure my face said: "Does anyone want to throw bales of hay into the baler willingly?" And once I found out they were 45-80 lbs I was like, "You're nuts" or the equivilant - Linda was WAY strong when I met her.

yanub: very insightful, I didn't realize I was doing that but I was, questioning my own worth because of how other people act towards me. When really, are they the people I would entrust with it?

Yeah, I have a bear in bed as it gives me someone to talk to when I am hallucinating and something to squeeze when you don't want to leave bruise marks on your arm and such in the morning. I wished my talked that way to me, they more often say, "If I didn't face the wall so often, I would have a lot more to talk about."

Dawn Allenbach said...

My friend Anita calls romance novels "mind candy." She says she reads them whenever she gets stressed and needs to "get away for a while without using any brain power."

em said...

I'm glad that you are listening to Lene and Cheryl.

About the family thing, I think denial is huge. I think people think that the gay thing will go away if they make it clear that they won't support it. And I watched my friend's family refuse to come help or to be any kind of support until 2 days before she died because they just couldn't face that she was going. Really dysfunctional family. Seriously.

Marla Baltes said...

You bring up some important points about chronic illness.

As you know M is still sick daily and we see our friends go down, down and down. Not as many people call or ask about her. This is especially true for friends that have young children. I have always wondered why we lose these people as friends and I have come to the conclusion that some do believe these things are contagious or that by hanging around us we may bring some sort of bad luck or something. This is all I can figure.

Hugs. You deserve and need support.