Tuesday, June 10, 2008

Control, loss of control, running away and the little things.

This is about carpet cleaning, finding my box of postcards, selling DVD’s on ebay and cleaning the van: in other words, THE IMPORTANT THINGS.

Let me back up a little bit. You know how when you get a flu or sick and you curl up in the corner for three days (unless you are one of those types who gets a bell and wants smoothies brought to you every hour)? Well, when you get BETTER, then you deal with all the little stuff that has piled up over your sick time.

But what happens if you have a condition where every week or month you have less and less energy, and you have been spending more and more time in doctor’s offices, or specialists, or tests? Does anyone know THIS feeling (I think you do, or recognize it). And then what happens is, even if you do feel tired or exhausted or sick, you are faced with so MANY little things that you have to make those decisions anyway (and it seems a never ending stream). In fact, there are so many decisions and so many things that you BURN OUT (there is caregiver burnout, but you know what, there is also DISABILITY BURNOUT when you are sick and tired of being sick and tired and how the world expects you to produce all these decisions/papaerwork and yet where is the YOU time, the FUN time?!!!! Or even the time to just be SICK!).

So you run away. Now sometimes, I try to LITERALLY run away, which does me little good and it turns out there is even more phone messages and more decisions to make when you get back. Or I run away mentally, in terms of making decisions, I make a tent, or the psychological equivalent of a tent and hide away. Because some weeks I get very, very tired. See, I have had so many tests, I have called and called big corp or insurance or some group, I have had to take on my own care giving agency because yet ANOTHER person has been sent who can’t read (when you are getting an assisted shower and you ask for shampoo and they can’t find which bottle of two it is….), and I just can’t do it. And that is all in two or three days. So I actually FANTASIZE about being housebound, as in, not by my computer taking 3-10 phone calls a day and having to make dozens of tiny decisions but actually like, just in my bed staring up or sleeping. Because then, getting to the doctor’s wouldn’t be my problem anymore right! (we still don’t know how to deal with that, as right now Linda sometimes takes off work, wheels me semi-conscious to the van, puts me in, drives me there, pulls in into the chair and wheels me into the office). But that so far can never happen, because no one, not the doctors, or the insurance companies, or the specialists, or the labs, or the caregivers, or even life-line ever relents. I honestly believe that when the time comes for Blue Cross to pay for my cremation, they will leave 3-4 phone messages and send several letters demanding my signature before they can continue.

And of course, Linda has all this too, in her own way: has paperwork from oxygen, from medical companies, from pharmacies, from insurance companies, from everywhere that she needs to fill out. Then there are the other details, of how many pills does Beth have left and when do we need to make doctors appointments to get refills and has she called to find out who is showing up tonight for the overnight shift (because the care agency is supposed to call her but doesn’t). And so all that goes on the kitchen table and only when I say, “Whatever happened to…” does that maybe, if I ask a few times get done and she runs away in her own way, sometimes to be with me, to spend time with me when I am sick or to do things or to just STOP being a caregiver. Or to go out to a movie to STOP and forget for two hours having all this extra stuff to do. Only it never goes away.

And the problem is that even though we are required every day to make decisions, we never know if these are the right ones. Do I go to badminton today or try to sleep an extra few hours; if I have a TIA tonight then going to badminton was bad, but if I have poor circulation later in the week then not going was bad. But there is no book, no guide to what is going on. I want to play the double bass, but when will I have time to do that? And with my hands, not able to feel, my left hand has almost no sensation at all, so how do I hold down the strings? So is this it, am I going to die soon, like in months, maybe, should I sell it and get the money (it is a several thousand dollar instrument), or if I live for five years will I regret that I don’t have it, that part of WHO I AM I sold off too soon? I don’t know.

There isn’t a book on how to grieve or how to make these decisions. So for another day, I run away, because every day, Linda and I have to make the decisions that other people spend weeks or months deciding. But we don’t have weeks or months because there is always more decisions that have to be made the same day or the next day (push for specialists or take a break, file a complaint with the college or try for a second opinion, call the owner for the air conditioner, then which one to buy, where to put it?), every day, every meeting it seems there are more of these decisions. And some will get delayed another day, and another until there are so many to make that all of life seems out of control.

Which is where cleaning the carpets comes in. Because each of us, in our ways of trying to regain control in a sea of tidal waves holds on to some THING some little thing that is important. And it nags at us, that we cannot even do this one thing, this little thing. Well, today I found out that Linda has wanted to do not vacuuming but carpet cleaning in our apartment, like with the water spray for about 1 year. All the medical equipment and the vortex of our kitchen table (where paperwork needing to be done goes to die), and me being sick have delayed this. So I am going to try, by Friday, with the help of my home care to PREPARE the living room, the bedroom, the hallway and the kitchen area so that on Friday night Linda can rent a carpet cleaning machine and gain back that control she wants. Scratch that itch. And she arranged with someone to CLEAN the van, another itch that she wanted scratched for a couple months. Does it make sense to me, to chose that over EVERYTHING else. No. But I know that it does to Linda.

For me, it is posting the DVD sets I have watched to sell on ebay – I try and try for months, get two or three listed every few months but never really list them all, they just stack up. From Due South, to Blood Ties, from Judge Deed to New Street Law, I have a year of DVD’s that I want to send off and get money for to put in my account so I can buy more. Because that is something I can do when there is little I can do. Only it turns out there is always SOMETHING more important, more immediate, or more overwhelming to cause me to run away for another week, another month until now it seems almost a year has passed. And will I do it tonight? No, becuase it is past one, and I need to post the blog, and I have a meeting at 11:00 tomorrow, and I need to dress and wheel there, and after that is home care, and then posting the three postcards I got done today. Then sleeping and after that....I am sure there is another meeting, another something.

I think we all in caregiving, or maybe even family situations have this feeling, the unfinished project, the table top that is never clean. Only when you become ill and disabled, the little becomes everywhere you look. How can I dust, when I am in a wheelchair? How can I change the room around when I am too weak to move boxes. When does Linda have the time to dump me out for a day and give the area of the apartment she wants a good cleaning and sorting. We have lost control over the big things, the life and death issues, and slowly, we are losing control over some of the major things; our future together, our career plans, our apartment turning into a hospice. So where is left to find control? I don’t know. All I know is that maybe, after the carpets are done on Friday, Linda will someone unwind, will feel better. And that one giant will be killed. It is worth trying.

PS – if anyone HAS a reasonable plan for me running away from all these responsibilities and decisions, please let me know. I also want to go away, either mentally or physically and not have to return to 16 specialist appointments and five organizations clamoring for paperwork. I want to have a tent, some plushy animals, a few books and a tea set. What happened to camping out in the backyard? Or rather, being an adult can be hard, and being a mature adult facing the kind of decisions we say that we will make, “in thirty or forty years time” sucks. Anyone want to come make my living will, because I don’t want to? How about going through my estate and making out a detailed will? Blah! Now getting the carpets cleaned, THAT I might manage. You notice I can push myself for Linda easier than myself (my own giants are scary, and hard to kill!)

21 comments:

SharonMV said...

Kudos to you & Linda for getting the carpet cleaned! I know how you feel about all the little things that pile up. Some of them never get done. we've been going through that for years. And then all the paperwork & appointments, prescriptions etc. Sometimes when I'm sick, I get behind in filling my prescriptions (try to get what I can through a mail order pharmacy to same money) and that get out of control really fast. And now I have more specialists than ever and at least 2 more that I need to work in. And then there are the times where I'm just to sick to go to appointments.

I remember watching the movie The Barrets of Wimphole Street - about Elizabeth Barret Browning & her family. She was up in her room lying on a sofa. She had a maid to help her dress, all her meals brought to her and all her brother's & sisters to visit her in her room every day. And she had her dog (and someone taking care of her dog). Not to mention the servants who took care of the house, etc. I thought, if I had all that being done for me, I'd have time to write poetry too.

I ran away today too - didn't make calls about my IVIG nurse problem or set up appointments. I wish you could camp out & be released from all these things you have to do. You have to keep doing what's important to you - like the blog & finding your postcards. I wish there were an agency that would provide an organizer to help. They have wedding planners, why not chronic, life-threatening illness planners? A personal assistant to supervise all the appointments, homecare workers, deal with all the paperwork.

I'm sorry that you and Linda have to make all those decisions. It shouldn't be, but it is. And it must be very hard for both of you.

Sharon

Neil said...

Your apartment sounds like my house! I think there are some people who can organize themselves better than I can. One friend said once that when she picked her granddaughter up from a babysitter, the sitter apologized for the messy house, because she was doing crafts with her four little sources of income, and the kitchen was in the process of being painted. But the house was spotless. Some people just aren't human.

Housework is patient. It waits for you. And it grows. I have no magic solution, but perhaps you need to call the people who have said "Just call if you need anything." Have them sort the pile hiding the kitchen table into smaller, file-able piles, and get rid of the pile marked Garbage. It's not what they meant when they suggested you call, but it's the "little" things that need doing the most.

Now, I have to hurry off to work, but I'll email privately about helping you get rid of some of the piles of DVDs.

Now, where did I leave my own prescription THIS time? Oh well, it's only blood pressure medication....

Yeah, right, Neil. Nice try. Memo to self: call the bloody pharmacy and refill it so the gremlins will return the missing bottle.

Zen hugs!

Lene Andersen said...

It's a particularly perverse fact that the people with the least energy get the life that requires the most. I'd like to see some able-bodied/healthy people try doing this!

Are there anyone anywhere who could help you with some of this? An advocate? A social worker (not a social service worker)? Is there a palliative care organization that might have volunteers who'd help? A church? A community centre? Yes, I know. That'd require more phone calls. Sigh.

Gaina said...

As far as selling your double-bass goes, do so if you can see the sense in it and if the money will allow you to do something within your capabilities most of the time that you enjoy, rather than having the damn thing sit in the courner and taunt you because you can only play it intermitantly.

I was thinking about you and Linda the other day when I was in my favourite book shop. There's a book called 'The Tibetan Book Of Living And Dying:' by Sogyal Rinpoche and I've been interested by the title but never actually picked it up until now. I only read a few pages but it's a very beautiful book that you both mind find interesting and helpful.

But for now, allow me to bring a naughty smile to your face...

http://www.deviantart.com/print/3444341/

;-)

Oh, and you can remedy the specialists with two works - 'F*ck...Off!!' Seriously, deal with the ones that can meet your immediate needs with pain relief and what have you but the ones who just want to satisfy their curiosity can absolutely get stuffed :P

Carol D. O'Dell said...

Thank you for this very honest and insightful post.

I was my mom's caregiver (she was in her 90s with Parkinson's and Alzheimer's) and I too, wanted to run away.

Here's my plan:
Drive straight to the bank and withdraw all my money.
Buy a box of red hair dye and a couple of cases of anything Little Debbie makes.

Eat and drive my way to Key West.

Change my name to Flo and become a waitress at a restaurant that overlooks water. That's important. I need to see water.

Live in a small, run down trailer with at least three cats. Eat most of my meals at the restaurant and become so good people ask for me and tip well.
I will have gained about 50 pounds by this time and will be hopefully unrecognizable.

No one will think of looking for me there. I can be odd, look funny, act quirky and have a gorgeous sunset to look at every night.

I know it's not a Browning/write poetry/people wait on you kind of daydream, but honestly, I'm over waiting--and being waited on!

Yeah, the redtape may be what does you in--strangled by a telephone cord--choked on legal docs.

~Carol O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir
available on Amazon
www.mothering-mother.com

Veralidaine said...

Carpet cleaning... hmmm.... I need to do that too. Next weekend adventure: Spring/summer cleaning?

*runs far away from the cleaning*

I think you should make a sofa cushion fort and have a teddy bear tea party. Right before someone comes to the door to interview you as the newest mayoral candidate.

spinningtransformation said...

My mom offered at least three months ago to hire a company to do a full floor to ceiling cleaning of our house since my partner and i (both disabled) haven't been able to keep up with it for so long. The hope being that a fresh start might make it easier... right.

Do you think that we have made the call?! of course not! why? because we are embarrassed to have a cleaning company come into our messy house... damn - what a stupid catch 22...

I would love to have clean carpets and strangely i totally understand how that will help Linda feel better.

good luck finding someone to help you with all the rest of it. it truly is a daunting full-time+ job being sick/disabled!

Christina

Victor Kellar said...

I have a connection to your DVD collection, specifically Blood Ties. I went to high school with Tanya Huff in Kingston, Ontario. We were actually best buds and writing partners.

We were both broke all the time so one of us would buy a book and we would switch off reading it. We read the original McCaffery dragon books like that, a chapter at a time, passing it back and forth.

We wrote like that too. At first we just read each other's stuff (we were not only the sole sci fi freaks in the school we were the only two who could write .. anything) then we started writing with other other, switching off paragraphs.

I gave Tanya description, she gave me economy, which served me years later as a copywriter.

I used to see Tanya occasianally when she worked at Bakka but since she moved to Picton I haven't seen her much at all. Though I wrote her a few e mails when the series came out.

Collette would leave me for Henry Fitzroy if he was real and who could blame her?

rachelcreative said...

The pile of stuff that doesn't get done is crazy.

Sometimes I have to pick things to do. A lot of the times I have to pick things to not do. Almost all the time most of it gets piled onto Paul's pile of stuff to do. Which is kind of sucky.

I found lowering my standards was a great help.

As is a big snotty crying session every now and again - it helps to sift out what is the most important stuff. Important meaning being an adult and important meaning fun and good for the soul.

The danger is you keep on that treadmill of crap and never get time to stop and assess and look around. It's oppressive the weight of all those tiny decisions. And thinking about EVERYTHING can be totally overwhelming.

Do you take time off thinking about all the STUFF? If sorting all this stuff was your job you'd take some time off from it. We don't always make that time for ourselves and those around us. But if you put stuff on hold after such and such time every day maybe the break will help you go back to it afresh the next day.

I'm no expert as you probably already know from my own blog!

Sounds to me like you are in need of a proper PA. Someone to deal with a lot of this stuff for you (under your instruction).

Anonymous said...

Elizabeth,

I know how you feel about stuff that doesn't get done. My caretakers (my son and my best friend) both being male, manage all the big stuff but I fret about the fact that none of my good wood furniture gets oiled or waxed or even dusted most of the time. Some things just don't get done.But it's so hard to let go.
As far a your living will goes it is really important, I did mie several years ago and need to update it, someday...
I completely understand the need to clean carpets. How nice of you to do that for Linda so it can get done.
Mary

Tammy said...

Ack! I loathe that feeling of loss of control. For a control freak like me, it is hellish, and happening right now, right here. Yuck. I have piles waiting around for me too. I put up with it for a while, then I have to make a list. What I choose as most important is usually what most wouldn't. I can see why cleaning the carpet would be a priority. It's something I would do.
Break it into small "bites" and do the best you can. OR...do what I do- Go to bed for several weeks, sleeping the entire time. That's what happens when I get overwhelmed. I totally shut-down and can sleep 20 hours a day.
Although, I am doing one small task now, that I have been putting off for a while and playing on the computer, at the same time. I will feel better when it's done.

Elizabeth McClung said...

sharon: Alas, I am going PREPARING to get the carpet cleaned, will have to see if that actually comes about. Yes, some of me is still working on list from being able bodied and I can't seem to give myself the slap to say, "Wake up and drop it!" But then there are still so many people who want me to BE and DO the thing that AB person could do (the AB Elizabeth). Yes, I agree, I too would like the luxury of an animal to comfort me, and family and my loyal family retainers to comfort me, fetch me toast when I ring and take care of the nitty gritty like cleaning the toilet.

I was wondering about the IVIG, I think we both wish we could rush to the rescue of each other. I understand running away, in some ways the more critical, the less able I am to face what could be a negative consequences, I cannot consider "What if?" if they DON'T decide in my favor, or how much more effort an appeal would be. Yeah, a personal assistant would be great. I think you could use one too. But I wanted to chronicle what life is like and THIS sometimes is what it is like.

Neil: I agree, I have been to people's places and seen then arrange thier magazines into a perfect fan while apologizing for "being so messy" - hmm, the stack of things I am planning to sort from 2006 - THAT is messy!

I am still waiting for the people who said, "Call me if you need anything" - remember, athletes and family, it was more like, Call me when you get better and we can compete again. Or call me when you are able bodied and not an embarressment to the family.

Yes, maybe I should make a list of the DVD's on here and people can see if they are interested in them first, save me the time for posting them to the UK - since I slit the cellophane, slide out the dvd's watch them and then slip them back inside the almost perfectly sealed package (I like to keep things as close to perfect as I can).

Lene: yes, I had not missed the irony that the worse your condition the greater the demands upon it - even ER admission requires mulitiple evaluations and forms to be filled out; I have no idea who did it when I was a space cadet and speaking spanish.

Yes, I am at the point where I would do a bit of articulate begging, but maybe I can find a sort of none destructive teenager to be my PA for the summer, do the lifting and help me, for an hour or two, three days a week? Where could I advertise?

Gaina: If I could play it intermittantly I would keep it, the problem is that I need to do 2 hours practice a day for a month or so to get up to scratch on it. I don't want to sell everything that reminds me of the LIVING parts of me, until all that is left is medical supplies - the house of dying. Ug!

Thanks for the smile. The problem regarding specialist is that I need some like a pain specialist, a rhumatologist and such and yet, to get them I have to keep pestering the GP - how many hours (usually 2 hours a week) is it worth it on the CHANCE I will get better pain management and IVIG treatment? On the other hand, what do I do if I wait until I have no strength, too late to request it then (that's probably when they would offer it to me!).

Carol O Dell: Obviously you gave this way more thought than I did - usually my plan is, "Wheel into hills and be a hobo, figure out how to hope a train IN a wheelchair when you live on an island"

Your plan is quite detailed and yes, sitting to see the ocean sounds good, redhead sounds good. I do think, what would quality of life be without so many able bodied people bleeding it out of us? Where do all the forms go - did I remember them saying we were going to live in a "paperfree" world by 1998? I think there are more forms NOW than then!

Verlidaine: I am not going to start a call to arms over telling people to do spring cleaning, I would be lynched. However, I will try to lead by example, which is, clean house makes Linda more relaxed and linda relaxed makes me more relaxed.

Actually the teddy bear picnic should BE where the interviews about my being mayor should occur

Spinningtransformation: Okay, you win, that actually beats us, though I understand the feeling, once we sorted out the "kitchen table" at our previous place and found a check that was two years old (oops, can't cash that now!). Now talk about frustrating!

Yes, if I could get someone to take over the job of the hassle and trying to keep up with the being sick/disabled, I could catching up on actually BEING sick.

Victor: I would like to say that Tanya Huff and I were ex lovers and she stole all her material from me. But that is a lie, but then, if I am going to lie, lie BIG!

It is nice to hear about these people "when" - one thing you can say is she has a good work ethic, any one who has those sort of a book a year or more contracts have to have a strong work ethic.

Rachelcreative: Yes, there is even the Pile of lists we made to try and tackle the pile of things we haven't been able to tackle. It becomes a life of its own.

This is the problem is becuase Linda is getting counselling on grief and part of that is her realizing that she is getting dumped on and then I realized that I am dumping on her the stuff that is overwhelming me. And then I don't want to hurt her, to overwhelm her but I just CAN'T DO IT all - so it is a balance and right now we are trying to reach out and guilt some people into helping us.

As for the oppressive treadmill, yes, very much - I have no time to be sick, I have no time to grieve or do things because I am always busy, busy meeting people (as I did today, and two last night) or trying to create a stable environment which always ends up changing (becuase home care changes, or the person leaves or whatever).

Sometimes, I have the energy and sometimes I slog on and sometimes I am found face down - but no, I can't seem to find the energy to do it all AND take a step back and evaluate. I just don't want people to say, "What would you do with the last day of your life" and my reply to be, "Sort out all the arrnagements that disruption would cause."

Mary: The living will is high on the To Do list, I just need to be Up and have a time when Linda is up so we can talk about it and write and then eat a lot of chocolate and watch movies becuase I don't think it is going to make us feel all happy. And I get that they don't get the little things which you HAVE had control over during your life now are getting forgotten and they don't notice but YOU DO!

Tammy: Yeah, I feel for you. The dishes are always in your face, like the trash. And yet they keep coming back!

I hope doing the small task is going well, I hope it brings back a small feeling of control. We tend to try and focus on a different thing each week - like this week it is "Get air conditioner in before it gets hot" and I am on "Get the rest of the house clean before it gets hot and I get sick and have to stay in bed and Linda is busy looking after me."

I just thought I couldn't be the ONLY one, or us the ONLY couple going through this!

Heather said...

About a month ago I read this at Waiting for the Rain: "Completing tasks that decrease the amount of entropy in my immediate environment is my primary method of coping. " It stuck with me.

Cleaning carpets makes a weird sort of sense. There's a diminishing amount of tasks fully under your control or under Linda's control. Carpets, though, you can probably defeat.

No advice about the organizing cause I suspect you and Linda would be more organized if you could be.

On the will/estate thing: how about starting the detailed will by taking photos of what needs to to go where and getting someone other than you or Linda to write the first draft of instructions? Would that help or hinder?

About the books: do you have enough to read? Or rather do you have the right sort of book to read?

Neil said...

Me! Me! I spook - er, spoke, first!

I WILL buy the Blood Ties and Due South DVDs, Beth. Just email me with the prices, dearie. Delivery charges/postage? If you tell me the amount, I'll mail a cheque.

My dear wife says Tanya Huff has a wicked sense of humour. I won't comment, because I bore easily and usually can't be bothered to read more than two novels in a series. Plus she will insist on spoiling the plots for me as she reads.

Zen Hugs,
Neil

cheryl g said...

I will be reporting for cleaning and task accomplishing detail this weekend. Tell your inner hostess to shut up and put me to work. So long as you don't expect me to lift anything over ten pounds I'll be fine.

I am serious...

Maggie said...

Hello- I am here when you need support, even if it is cleaning, helping pack up items for ebay, whatever! Of course, I know it offers up a catch 22 because then you'll have to make decisions too. Where do things go, what do you want to do with things, etc. But the important thing to know is that I"m here for what ever you may need.
Maybe, you could talk to the paramedics that you like and find a good caregiver that way? We often had young/new kids that were excited and had good skills but needed practice or time. Maybe they know someone in the same situation?
I'll talk to you soon. And I think you should run for Mayor in an non stressful, kick ass, subversive, kind of way!

yanub said...

Let's see. I moved mid-March. It's now mid-June, and I still have boxes unopened sitting in plain sight. Most days, I simply have no more energy left over after work to even consider going through just one. And then there is always some new chore to do. I came home today to find that someone had turned a pickle jar on its side in the refrigerator door, and pickle juice had completely filled the door shelf and was sticky on the ground. As I tried to clean up the mess, it got bigger. So I threw a bag of something soaked in pickle juice, torn now and disgusting, as pathetically hard as I could at the floor to join whatever it was that had fallen out of it. The mess is mostly cleaned up now, but I still have to mop the floor. And I absolutely have to hem a pair of pants, which means I have to search the unopened boxes for black thread. And I still have to complete my budget for the month before I get so behind I'm lost. And it's midnight. And I feel like crap.

What I'm saying is, when you run away, take me with you.

SharonMV said...

Dear Beth,
Here's something you can stop worrying about - I'm getting my IVIG on Thursday! Insurance co & nursing agency seemed to have worked out their differences. so not even a day's delay in my treatment schedule and my same, nice , competent nurse. I guess my day of running away from the problem way the right thing to do. Having this issue come up again did make me remember the bad old days (of 5-6 months ago) when I was dealing with trying to get a nurse every 3 weeks. And I realized how nice it's been not to have to go through that.

Several years ago, I was supposed to schedule a carpet cleaning & get things ready for it and today the carpets still haven't been cleaned. But I did actually sort through a pile of papers dating back to 2006 a few weeks ago.

Try to get some more friends or family to help out now (believe me, I know how hard it is to ask, then how much harder it is to heard by those you're asking for help). I used to get really upset about the lack of any help from my sisters (especially the one who lives about an hour away, doesn't work & has one school aged child). One of my sisters would come every few months & visit & help out some. Then when the house was really falling apart & things were piling I started getting angry. Then when I realized that Things were really piling up on Dennis, & that no one was helping him, I got really mad! They did help some & my sister in LA actually come down here sometimes & helps out. And my littlest sister, who lives in Oregon & can't get down here much sends me money (so sweet). So, I know it's a lot of hard work, but try to get people helping now & that will make it easier for Linda later on.

It's hard to decide what to give up & what to try to hang on to. I had to decide to just give up my little garden & just let it die. I didn't have the strength even to keep it watered or to get Dennis to do it. And I didn't want to lay yet another task on him. I let it die &gave it up so I wouldn't be grieving about it everyday. Of course I had hope that I'd get better and be able to make another garden, but i had to put even that hope away in the very back of my mind. I still don't know if I'll ever be able to have a garden again (and I'm talking small container garden on the deck). I can't imagine what it's like to know that you won't be able to do things again. I've had the fear, but not the knowledge.

Sharon

Elizabeth McClung said...

Heather: Yes, I find that often I am speechless at Waiting for Rain, so elegantly does she wrap these open ended riddles of disability - and I am not often speechless.

We are getting the air conditioner in, which will allow me to live. So that is important. And if we can keep on task, exhaust myself to do the vaccuming, it will be worth it. This is Linda's Postcards, the vaccuming, her control, her doing something MORE.

Books, I have many books, but am both losing my sight as well as the time, so much life, so little time. My ability to read comes and goes as does my eyesight. I spend most of that time writing. I have a few thousand books, so I don't know what to do, this is my memory, my life, my plans, my future, my academics, my career. The thought that the pleasure of this or that book will die with me is almost more painful that the thought of not being around to see what happens next. I dedicated my life to the book, and now I can't say if it is was worth it. But I will take the pictures.

Neil: no problem, it is just I am not sure what region they are so when I can find them again (Linda has sort of messed up my "to sell" pile, to get the air con in - so I need to see if you can play region 2 as for instance, Blood ties isn't released in North America, just the UK (which is PAL and my DVD set), so I will email about that.

Cheryl: I though we were going and doing the DIRTY this weekend....I mean going to the HO! or the Hoh Rainforest! Or are you coming to clean, where will I go? I do not do well in a small space with determined cleaners, much like a cat around pails of water.

Maggie: I want to run for Mayor in a kick ass subversive way too. Maybe I should wheel down to city hall! Thanks for the offer and I will probably take you up on it when it comes times to do the packing and such - I need to sort and then do the prep, which takes a week, then 2-4 days of listing, depending on strength and then the packing and posting. And then lunch on me!

I know an EMT from Sidney (they are not jerks out there) who works at the GP's office and ask her if there is someone I can hire part time, even just for helping me clean - they will learn how to use medical supplies AND help me clean, a two for one - see me change colors like a mood ring!

Yanub: I can identify with the pickle story, particularly the throwing it down in frustration becuase what does it matter anyway. This happened with blood last week, and covered everything with some meat linda had bought, joy!

I am sorry that you feel like crap and yes, come with me, all I can say is it is odd how sometimes, after sleeping, once convinced in exhaustion that I can't do it, no, no, no, no, no, no more! That I find another little spark in the morning to go on. I hope that is there for you. Either way, run away or stay, you tell me what I can do and I will do it (if possible).

SharonMV: I am VERY happy to hear you are recieving treatment again, very, very happy! and that you don't have to go through that again.

Linda and I have put out every feeler and demand we can, we even went to my parents and said things like, "I know you don't want to see me but can you at least get the van in the car wash?" And that is the end of family. The extended family would be pretty happy if I died right now. And my brother...well, that isn't going to happen, I don't know if he would help my parents. And Linda's relatives are all far away. There is a very short contact list. It isn't about humble pie, it just isn't there. I mean, one of my relative left thier OWN children for a year without telling them (left the country). I am glad however that you got your sister participating, because it all helps you and Dennis.

As for saying goodbye, I hate it. It is bad enough that I have to lose much of what I was last year, now it wants to eat my past, until I am nothing but a THING in a bed. No history, no skills, maybe no memory. Sorry, a little grief anger there. There are not easy choices, and all of them are hard to impliment too - where to advertise, who to sell it to, etc. I do hope you get a bit of a herb garden, maybe just some parsley in the window?

rachelcreative said...

Oh yes - trying to see what is "dumping on" and what is "done for love" and what is ummmm .... other stuff. It's difficult.

You realise it's not fair for anyone but that doesn't mean it all goes away. I feel crap dumping stuff on other people - but I know (from when I was not ill) that they are perfectly capable of helping me do stuff. But equally they are also allowed to as pissed off about HAVING to do it as I am about NOT BEING ABLE to do it.

I got married in July 2006 and had my dress dry cleaned. It is still hanging on the shelf in the front room where Paul placed it when he got homr form the dry cleaners. I have tonnes of acid free tissue to wrap it in, a special archival box to store it in and more archival boxes for all those keepsakes things. All sat in the box they were delivered in under the table.

I have stopped whining about wanting to store my wedding dress. Now it's just a secret and occasional ache.

I have soooo many things that need doing before that. Oh I could weep at the thought.

But that doesn't change anything. So I just choose to forget and choose not to "notice". Because otherwise I'd go crazy.

I figure - no matter how many things I get done there's always going to be something not done. So I just let the scales fall to the not done side more.

Bah! It's just crappy isn't it?

Seriously - you need a PA. Just for a while to get the majority of stuff back on track. To give a mandate to about certain stuff and let them get on with it.

Dawn Allenbach said...

I refer to this phenomenon as "one more damned thing" -- as in, I'm trying to accomplish something, then one more damned thing pops up to delay it. The latest is my low hemoglobin and hematocrit levels (about which I will get around to blogging). AAARRRGGG!!!

*hugs*