Wednesday, April 29, 2009


I haven’t been able to rest for the last week because earth movers came in with jack hammers and trucks and heavy machinery and took down the house across the street. The next two are slated to go as part of a development scheme that passed through before I got sick. This shady side of the building apartment; now fitted for my survival will soon go.

I don’t know where I will live, but I know that without the sleep, I am only awake a few hours a day, and not healthy during those. Each afternoon, waiting for sleep, I fall semi-conscious. An hour I only breath 20-25 times is not a good sign, it is not a good daily sign. We have talked to the developer for whom I am sure there is always ‘discomfort’ or as one manager said, “You don’t HAVE to leave, you are choosing to leave.”
I pulled off one of my winterized gloves (I had severe frostbite in the 60 degree weather the day before, and before that), and one hand one was green. “Do you see that, that is a body desperately trying to shed heat, only it can’t. The next stage is heat exhaustion, the next is coma.” I pulled off the other glove. I held up my hand, which was purple next to theirs, they tried to recoil. “This is a sign that I do not have enough oxygen in my body. If I do not sleep every few hours, my autonomic system fails.”

“Well there’s no place for you here.” They said and shut the door. I am tired of people viewing the never ending work of staying alive as a choice or an eccentric attitude. There are three consistencies which make up my day: 1) Any and all autonomic systems can and will fail at any time; 2) I will have no memory and 3) Every day is variable and I begin to weaken the moment I wake up (if I get only a few hours sleep due to earth movers, I wake already weak; if I have to stay awake 13 hours day after day, because of earth movers, I start to fail in dramatic fashion). The hospital can’t save me. No one can save me but having stability and consistency. I should put a 4) Every single thing is a variable of stress, from sound to movement. Each variable adds and accelerates the daily degeneration. If I have noise all the time, my muscles tense, I tire, I get headaches, what failure might occur in 5 hours now occurs in four.

Number 2 is critical as I do not know. If there is someone on the phone and they want to know something that is more than a few minutes to hours old, I do not know. The more fatigued I am (which happens twice a day, right?), the more difficult it is to remember even the last few minutes. I spend time reading, and repeating and trying to remember. If you ask a question, the answer is, “I don’t know.” But I can’t say that. I am asked questions all the time. How’d things go with the doctor? What do you want for lunch? What do you need? What time did you get up? Did you file those disability forms? Did you get that letter from…. – I don’t know, I don’t know, I don’t know. I don’t have control over it, I just don’t KNOW. I wish I did. I don’t know when the trucks first arrived. I don’t know how long they have been using chainsaws every morning (7:30 am) and working until past 6:00. I don’t know.

All I know is that I cannot remember what I need to remember to keep myself alive, I have some things on my ‘brain board’ and I know some times, and there are some lists but that is why I have care. They can tell what I cannot feel (As I cannot feel much of my body at all), if I am too hot, if I am cold and clammy, if I am going into shock and take action. It is 11-14 degrees (54-63 degrees) and there are two air conditioners full time and a fan going to try and keep me alive. I don’t know how much oxygen I need, I don’t know what to do sometimes. I feel very bad, and fall to the floor, and I know this means something but I don’t know what. I don’t remember. I don’t remember what to do. Time continues and I still cannot sleep, I am sleeping in the hallway using the rooms as another sound buffer but it is not enough. The heat is making me pass out, the sound is keeping me awake, my heart is faltering, my lungs faltering. I overheat, I can't feel it and don’t notice.

My home care has fallen through and right now I have lost all night shifts and am down to two workers who come some days. I forget to drink, I don’t eat, sometimes for days as Linda is working again now. She finds me, and puts me to bed where I sleep and sleep and wakes me before she sleeps. I do not remember how I came to be on the floor. I try to write down what calls I received and what they wanted. Remembering, crying in frustration, talking are all stressors, I get worse; my memory gets worse.

I wish, for the days when I was an equal human, and I could with others take a chosen break, to rest and relax. I want to go on a date. I want to spend time with Cheryl and Linda that isn't like an ambulance ride. To enjoy the things like a hummingbird I saw today. Where? I don’t know. When? I don’t know. Every ten minutes I have to check my health, every ten minutes someone has to check my health. I don’t have a place to live, I don’t have the finances to move even within my own city or a few blocks. I wheeled this afternoon, in desperation trying to find a block WITHOUT future construction and with the rarity in this town (level entry – or no two stairs after the entry!). I don’t want to leave this neighborhood. I need a top floor two bedroom apartment on the non-sunny side with quiet. I need a place for the hospital bed, the two oxygen regulators, the grab bars, the wheelchairs, and then of course a place for Linda and a place for the over night worker to sleep. I need it to be the same price. And yet, I don’t know how I am going to find it. I will call city hall when I get up and am most rational, and don’t slur and don’t say odd things, or forget my name and find out if I can put an injunction on the building until they find me a place. Since the disabled and the dying have no rights in this city but a developer has many, many right, I doubt that will come to much.

This apartment is where I have lived in Canada, this is the place I know. When I get confused, I will keep trying to come back here as this is home. Even if I find another apartment, they will probably find me out here, waiting by the door. That is, if I manage to survive the summer. I am trying to get well enough to see a doctor, as going in with severe autonomic failure doesn’t help; they have the paperwork, and they can’t fix that. I want them to focus on what they can fix. I need to get well and I have to move. I need stability and consistency and I have no home, no home care. Hypersomnia isn’t a choice, it is a medical condition. Leaving isn’t a choice, having all of this isn’t a choice. I suppose it would be easier to just be a bit less planned, a bit less smart, a bit less proactive, and wait on the medical profession and thus die. Wait on the kindness of the landlord, wait on the kindness of the builder, wait on others and die. Every day, the moment I wake, I get weaker. Every day, if I don’t work and fight could be my last day, it is my responsibility not because I want it, but because no one else will help. And when I am too fatigued and thus mentally incompetent, if care is not there, then there is the potential to die, or I wait, or I sit, because I don’t know what to do…..because I don’t REMEMBER, until Linda or someone comes.

I know that the people having vacations or ‘personal days’ or forgetting to get back to me are not heartless, it is just no one can really believe that someone can go into complete heat stroke coma in an hour and die a few hours later. And that they do it in their bathroom, or while sleeping. No one wants to believe that as the lack of oxygen spreads through the body and cells themselves have it ripped from them to feed the pain, it makes pain and weakness, which put the body in a balance which is not externally sustained, will terminate. And when someone calming, or not with a certain intensity shows them, in front of their eyes that it is already happening, that I AM already weakening, already dying TODAY, and that I am out trying to find a way to stop that from happening…..they close the door. This is not what they want to know. They are not evil or heartless, they are scared, and it just cannot register or believe. It is in the same way something like the spread of meningitis in Wales, where headache in the afternoon, fever and dead in the evening doesn’t register. “But I just saw that student yesterday…..they looked a bit flushed but……”

I don’t know if I will be pushing myself ragged trying to find SOME stability, SOME place to live where I feel safe, where it is quiet, or if I will try to rest up enough to begin treatment to prolong life. “For what?” Is what I silently ask some days. We have to move because of me; if I could find a job, I could, like Linda be away during the noise. It would be a mild annoyance. But no, in order that I live, we have to find a way to scrape the barrel bottom for moving funds. So more garage sales, more calling around to managers, who call legally refuse to rent to me because I am in a wheelchair (Linda will do the looking, I will wait until AFTER the lease is signed to appear – that is the role of lepers in society). Either way, I want to be smiling, regardless of pain, I want to be the person who writes happy notes, but…..13 hours of multiple chainsaws 30 feet away? For as long as I can remember. Is it not easier to simply stop checking every ten minutes for something I might not remember how to fix anyway.

I miss going outside. I miss picnics or looking at flowers. I miss knowing that I would live here and that this was home. I miss knowing that I could focus on joy, instead of having to play at adult, a game I tend to fail at more and more often. I like watching films now, as even the most minor character gives me a feeling of nostalgia. Of knowing something beyond, “I have woken up, is that AM or PM? Am I half way perked up in my daily weakening or has it begun again. What do I have to remember? What happens if someone calls? What happens if someone knocks? How many hours have a slept, do I know? No. What DO I know? I know this isn’t my home.


Neil said...

I can almost understand the trolls who sometime appear to call you a liar; your life story is unbelievable, unless people take the time to look at past blogs and get to know you. Then they'll realize that it iS possible to have the vast mood swings, the tales of unending pain, the prejudice from AB people, and the daily struggle to keep your health stable while it declines.

I wish there were something I could do to help you, Beth. As it is, I'm sending all the positive energy I can, and hoping for peaceful time when you need it most. I'm still with you (in spirit at least), and I'm not leaving you.

Love and hugs,

wendryn said...

I don't know what to say to this - you are in a world of hurt, and there isn't much I can do. I hope it gets better. I hope you find another apartment soon. I hope it gets easier somehow, and that the summer isn't too bad this year.

I am, as always, rooting for you. Sorry I don't have much more interesting to say today.


Anonymous said...

Is this the same person who did a 10k this weekend and gave us a detailed account of what happend?

Abi said...

Oh, Elizabeth - have a virtual hug. This de/construction work really is the last thing you need. I don't want you to have to move away from home and security. I want to come round and nail egg boxes to all of your walls (to deaden the sound, rather than because I am a crazy person. That's what I tell myself, anyway). They are invading your sanctuary, and it is not on.

I remember the joy of building work - it is going on quietly outside my office window, and will be ramping up again soon. Even as a mildly frustrated person it was/is/will be a pain in the backside; as somebody who actually needs to sleep, it will be more than difficult.

I wish that I could actually help. As it is, I am sending lots of sympathy (and, apparently, apathy) in your direction. Ignore the apathy, unless it helps you to sleep.

Kate J said...

Glad to hear Linda is back at work, but I can't believe you're not getting proper home care, with day and night helpers. I mean it's not as if your condition has improved. Must be a great worry for Linda (as well as for you, of course).

And I do know what you mean about the noise of construction work - a year or two back when my mum was in a lot of pain and awake through the night, there was a site just across the road where they started every morning with those hammer things at 7am. Every day except Sunday. For months. And do you know, they finished the houses just in time for the recession, and none of the damn things sold? A year after my poor mum died and those houses are still, for the most part, unsold. Some of them weren't even finished.

Hope things ease up for you soon.
Love & peace

cheryl g said...

I am glad you did the 10K even though it wiped out the reserves you had managed to build.

I am afraid that the stress to your body from the 10K is making your current problems with heat and noise so much worse.

I see you every week and it still can take me by surprise how quickly your condition can change/deteriorate. You can go from animatedly conversing to slurs to semi-conscious in less than 5 minutes.

I am sorry it is so hard right now. I will still be there every week and I will help Linda try to solve some problems so you can rest.

FridaWrites said...

My heart breaks for you in having to make a decision about moving, though extended construction noise would be really devastating for you for all the reasons you state. I'm sorry for the severe duress your body is subjected to.

I'm wondering if there's any word on the IVIG treatments, whether they will they be ordered in Canada. I'm sure Linda's checking on this.

Worried about you and hoping for a solution quickly. I wish you didn't have to be alone in the day.

rachelcreative said...

What's the expression? It never rains but it pours.

Being under such a constant stress is the last thing you need right now. I know what effect the construction work would have on me but the consequences for you are so much magnified and also very serious.

Are you able to wear ear defenders with maybe your headphones or ear plugs in too? I know ear defenders can help cancel some of the worst noise for me (a summer with building work nearby and successions of hedge cutting and shredding). I bought some good quality ones used by builders designed to be worn all day. But they can get a bit uncomfortable after a while and sleeping in them is a bit tricky. Though if I needed to I could!

I'll gladly help out with paying for something like that if it would help. It's dreadful being unable to escape the noise.

The stress (body and mind) must be taking a terrible toll on you. And it's going to unsettle you and affect your mood too. I hope the noise abates and it feels more like home again.

Lene Andersen said...

Damn construction. If they're not going to helo, they could at least just do nothing instead of hurting you. I'm so sorry you're going through this.

yanub said...

I know Linda has been looking for another apartment for y'all for some time now. May her search be fruitful.

In the meantime, is it at all faintly desirable to try what's called around here (and I hate the name, but don't know another) "adult day care"? I have no idea of the sort of program that might exist in Victoria, if any, but maybe such a program could provide you with a more restful place than your current apartment for a few hours a day for a while? If it's just another nightmare scenario, forget I even suggested it.

thea said...

Developers probably *pay* to have a lot of rights. This is so not what you need...

This sounds like a lot of strain, with Linda back at work too. I hope you manage to hold on and ride this crisis, and that you can all hang in there.

And that you can manage some regular sleep!

SharonMV said...

Dear Beth, I'm so sorry that you're having to deal with all the noise & construction. I remember how bad it was for you when the roofers were working on your building.

And then it's so hard having to try & do something about it when you're ill & had have no sleep. Having to call up unfeeling bureaucrats & try to make them understand when even forming a sentence or holding on to a thought requires so much effort.

Will they stop construction if it rains? If so, I will pray, no dance for rain to come.

Love, Sharon

Queen Slug said...

I wish they could spend just 5 minutes in your shoes so they would understand.

Anonymous said...

Perhaps Anon isn't hostile, everyone must realize that asking for clarification here is reasonable. Even Neil said that he can understand why questions would be asked. A 10k marathon is an ordeal that many without disabilities cannot do, so how is it possible to wheel up hills one day and then say that for two weeks you've been too sick to go to the doctor. Perhaps Dr. MacClung needs readers to be a little more rigourous, I'd guess she'd fail any student who didn't ask questions about what they read. I have loved this blog for a long time even though this is my first comment. For me, Dr. EFM, I smell a rat.


Elizabeth McClung said...

Dear Alice: Can you please be more specific regarding the rat, as actually we here at Screw Bronze are somewhat rat-friendly; unless there is some genus you particularly dislike. Or rather, if you feel I am lying, please just say so, I can't quite tell whether I am being insulted or not.

As for Neil, he said, "Almost" - and yes, my life story is pretty odd, almost as odd as anyone's when you get right down to it who has drive, intellegence, deals with obstacles, and then gets ill of a rare disease - or in actually most people blogs - I for example find it MUCH easier to assume that people who knit simply buy the things like I do, and lie about the work they spend on it than actually do the work: my goodness, that Yarn Harlot woman, must tell the biggest porkies this side of the Atlantic (while the Queen Mum, we know tells the biggest ones that side, as she is really a 27 year old actress named Fiona). He uses 'almost' because ANYONE who reads for any length of time, I find it inconcievable, as do most of those who read, to assume I am lying. I am hated because I DON'T lie, the schedulers at my care agency read me, the government managers who are homophobic to my partner read me, because they fear...well the fact that I blatently tell it like it is. There are no legions of people with disabilities rolling over me for lying because....they know what it is like; in the same way when I wrote for the BBC, about Toilets, or ignorance, or whatever, people knew I spoke the TRUTH (or as close as I can get to it). That a person cannot concieve of a person being to depressed, despondant, autonomically ill, or just the disability time (the whole two to three hours to get ready to get up and go, and then the waiting at the walk in clinic I now have as a GP and somehow getting home by myself) for something which for the most part cannot be treated. Do Migraine sufferers go to the doctor, EVERY time they have a migraine, like NEIL for example, no. Because once you Have the meds, there is NOTHING THEY CAN DO - so when Neil says, he is up vomiting from Migraines do I say, "Neil, I smell a rat, how is it you can go biking in the cold but then be sick for 8 hours a day or two later and NOT go to the doctor.....LIAR!" - NO! Because I am not (an ASS!) a person who is unknowledgable in the limitations medicine.

I notice no one seems to obsess about Neil's 10K (marathon is 26.2 miles, I did those too, a lot). Maybe because I post pictures of myself all the time, maybe because I am so incredibly open. And no one seems to be doubting the 10,000+ others who did the same race. No one seemed to doubt my write up earlier where I explained why I needed to start, and didn't really plan to finish (seriouly at 2K, didn't think I would, just pull over and that was that).

I said, and I repeat, for those who say to themselves, "I would do X except if only......." I will prove with my body that you have no excuse.

It seems that I forgot the human capacity for avoiding self examination, which is to that which requires it, a liar. I am going through um, grief, pain, loss of motor function, loss of fine control, loss of heart function, loss of lung function, loss of brain function, depression and a FEW other things so quite honestly, while I could say I don't care; I do, the nay sayers are extremely painful to me, and if you are amoung them Alice, or not, ask yourself, if you have ever gone to a GP or anyone and told them something rather important (like you were in pain) and were not believed, and how that felt? And how it might feel to have that every single day, WHILE you are trying to cope with the fact that parts of you will NEVER be the same again, and the words of the white coats are bouncing back and forth and you realize you won't beat it, you won't indefinately extend it, that yeah, you ARE going to die, and probably with as little dignity and a great deal of suffering and that is it, and wow, does that suck, but meanwhile, you get to have people call you a liar every day?

Grief is a bitch, but it turns out, so are humans.