Monday, May 26, 2008

The Fear Invasion

Fears are running through my head today. It started before dawn when I was up nearly every hour giving Elizabeth water, tissues, valium or cold packs.

Then as I got ready for work I wondered if this was a good decision – leaving her home alone. She asked me to cancel her lunchtime home care as she didn’t want to bother with human interaction. Would she take care of herself? (Turns out she didn’t have the neo-citran hot-lemon drink nor any food that I can see.)

Throughout the day I’m afraid to call her in case she is sleeping or unable to speak because her throat hurts too much. Thank God for email. Even short responses that say she’s just sitting and zoning out and could I mind the blog today answering comments, posting links and such? Sure, anything to help.

We finally had a chat shortly before 4pm. She sounds horrible and says one nostril is dripping steadily. She’s scared because she doesn’t know when or if her fever will ever break. Me, too. I’m also feeling guilty for leaving her on her own all day.

“Shall I come home early?” I ask.

“No, I’m going to nap now. There’s no need” she replies.

Okay, I think, but I’m not staying that late tonight. I’ve got things to take care of at home: get food down Elizabeth so that she has energy to fight this illness off, working on the blog, taking care of Elizabeth.

Will I have to draw a tepid bath for her to soak in, in order to cool her body down? Boy, is she ever going to hate me for that one! Her parents used to put her in cold baths as a child because she often had high fevers.

It’s nearly four hours since that phone call and she’s still asleep. Now I’m wondering when she’ll get up. And will she ever be able to get back to sleep tonight?

But then there is a more sinister fear… the leading cause of death for people with Multiple System Atrophy is pneumonia. What if her illness turns into that? I'll try not to think about that one. I hope she just has a summer cold and will get better soon. She feels it’s more than a summer cold. Maybe it’s a flu? What’s the difference between a cold and a flu anyway? Do they both have fevers? Should have listened to Mom a bit more – might need to call her for clarification.

Here’s hoping her nap will have done her some good. Oh, I hear the bathroom door closing. She’s up! One fear down, a few more to go.

Elizabeth (8:30 PST): Ha, my fears are slightly different (I knocked for help, but she did not hear me, too many air conditioners going at once). I do have a full bladder because…I don’t sweat. A continuos fever and I don’t sweat. In fact, I thought on the edge of better yesterday. I had passed what I thought was the high fever stage and then a full congested nose, which indicates the contagious stage as white blood cells and virus are cast off. Nasal cavity started to drain. Thus all better, the fever only .5 degrees or so.

Then, suddenly, it spiked, at 4:00 am, and never let up, a higher fever and no sweat. I don’t sweat. How do I then avoid brain damage? My sheet is bone dry because I don’t sweat, but every hour, every forty minutes, Linda was putting ice on me, or giving pain pills or valium so I could sleep. Sleeping with an ice block on my chest. And I am still too hot. My nose bled, not because I was blowing it but because my blood pressure spiked. My fevered body cannot keep all the systems stable.

I woke, after over 10 hours, the fever was the same, we had a cool spell so I opened the windows, turned up the fan, I needed to make that room a fridge. I cannot cool my body off. How do you break a fever in a body that does not sweat? If the fever was down and then spiked, does that mean I am immune compromised? I don’t know. I haven’t had any contact except maggie and Cheryl, not since the Ferry on the way back from Nerve conduction (Wednesday).

I slept another five hours, and now my nose is not bleeding but my heartbeat is high and erratic. Very erratic for someone who has been awake only three and bit hours. How do I break the fever? It is 1.5 degrees high now, down from earlier, but it will not break. The room must be kept cold. The heart hurts, it must be more erratics. The only solution used to be sleep. I do not think sleep is working this time.


yanub said...

How very scary. It's dreadful feeling like really, you should take her to the hospital but knowing that she absolutely does not want you to. I'm glad you are blogging so that you can relay your fears, Linda, and so that you won't feel you are alone with your decisions.

A cold and flu both have fever but the fever is much worse with flu. If Elizabeth has flu, as weak as she is, she would need to go to the hospital. But I don't think she has flu, if she got herself to the toilet. Generally, with flu, even a person in tiptop condition is going to struggle to get out of bed, and is sweating too much to have much of a full bladder. So, chances are, it's a cold or allergies, and they are knocking her for a loop because her overall health is poor.

Elizabeth, I hope whatever it is that is kicking you gives up and goes to kick someone who deserves it.

FridaWrites said...

I understand all the anxieties. With flu, there's often a cough and bad backache at the beginning, as well as generalized muscle pains. There can be a fever with colds as well as with flu. Just watch for sinus infection. A home health care nurse, if any of your workers are nurses, can teach you to listen for the pneumonia crackle with an inexpensive stethoscope. A continued fever without getting better can indicate pneumonia. No wonder the sudden exhaustion at the cemetery--she must have been coming down with this then.

Victor Kellar said...

Ah, the role of the caregiver: Should I be there or give her space; should I call to make sure she's ok or face the inevitable "Why are you waking me, I just got to sleep"; should I take the day off to meet her every needs or understand that one of those needs is to just be alone, by herself, mending...

In our 25 years together Collette and I have traded off the role of care giver. Her broken elbow, my shattered ankle, her fevers my headaches ... all the time dealing with bosses and salaries and deadlines and border collies to walk and responsibilities outside the house ... when you feel the house and the person inside the house is the most important thing but still someone has to pay for the medicine ..

Its never easy. Linda I wish I had some magic answer for you but I don't Just go with your instinct, from your learned experience, just as you seem to be be doing

Side note: I've been following the weekend adventure links and collecting pics, video whatever I can get. Hopefully all the individuals involved are cool with this. Since there was no adventuring for me this weekend, maybe my adventure will be to create a video record of all the other missions, something for fun

Marla said...

I hope she is doing okay now. I can't imagine the stress and fear and intense emotions you feel while you are at work and Eliz is at home sturggling. It can not be easy on either of you.

I am catching up on your posts. I am sorry to be so behind.

cheryl g said...

Linda, I'm sending an email...

Wheelchair Dancer said...

What ever it is, I am confident you two figure it out.


cheryl g said...


I hate to say it and I know you won't like it but... a soak in a tepid bath to help lower/break the fever would probably be a really good idea.

Tammy said...

Linda- I can just feel your concern and fears. I wish I had some sage advice, but I got nothing. As has been said above, go with your instinct and advice from those you trust.

Elizabeth-I just couldn't imagine. Sweating is the major part of your body regulating temperature and vital to that fever breaking. It's terrifying for both you and Linda.

You two have an amazing relationship. I wish my spouse would just have half the concern for me when I'm ill. He's a good man, but a total boob sometimes.

The only thing I can offer is some healing thoughts. Thank you both so much for updating us. At this point you BOTH must be exhausted.

Elizabeth McClung said...

Linda says...

Yanub: Thanks for the clarification. I remembered that with a flu it is nearly impossible to get around. Our GP in Britain said if you have a cold and a 50 pound banknote is flying across your windowsill you'd get up an get it. If you had a flu you'd let that 40 pound note fly right on by (whether you wanted to or not).

Fridawrites: Elizabeth woke with a slight fever and a sore throat on Saturday morning so yeah, it started before our fun in the cemetery. An inexpensive stethoscope, huh? Might have to check it out.

Victor Kellar: We've always taken turns being the care giver too. When I was burning out last fall Elizabeth STRONGLY suggested I take a week off work. She even went with me to my GP to get the sick note.

BTW, we have more of Neil's pictures. Let me know if you'd like them emailed to you. Is this okay with you, Neil?

Marla: Quit apologizing. I understand from Elizabeth that you and Maize have been going through some intense health stuff. We're happy that you can pop by when you can.

One thing about my job is that it's always busy so it distracts me from worry about Elizabeth sometimes. I think she has it much harder than I do.

saraarts said...

Argh. So nasty. I hope it resolves soon, magically, vanishing so fast you won't remember how it felt at its worst -- and that Linda doesn't catch it.

I know; my mouth to germs' ears. But that would be unsanitary.


A Bear in the Woods said...

My grandmother never sweat(ed?). But I suspect it was because she imagined herself to be a southern belle, and as we all know, southern belles never sweat. They simply glow.
Actually I think it was because she was a scaly creature in disguise.

Neil said...

I've just emailed you, and promised to find my own bed, since it's so late. But I will say that it's perfectly fine to send anything of mine to Victor. Except, I sent him everything this weekend - compare notes with him to save the bandwidth of duplicates. He also has a video that bounced from your mailbox due to its size (14+MB).

Cheryl: would it help if Beth started off in a comfortably warm bath, and run cold water into it a little at a time to lessen the cold water shock?

Goodnight for real now, Beth. Zen hugs, pure thoughts (yeah, right!) and halthy vibes are winging your way through the ether!

Raccoon said...

I went to a cemetery, but I wasn't able to get in. ;(

It was actually a "monument" cemetery, apparently. Some of the local government agencies are trying to clean it up and fix headstones, when they get enough money.

We did take some pictures of the stones, though. Some of them are broken, some are leaning. And we saw a couple of crows. There were a couple of plots that had that checkerboard pattern, too.

I'll send you a couple of pictures. It was also a test for a new camera, a $40 job from Big Lots!, a discount store. Seemed to work pretty well, although after I got home I looked at the manual to find where the zoom button was...

Raccoon said...


That was supposed to go on the previous post!

Fridawrites mentioned an inexpensive stethoscope. Back when I was using an agency, they insisted that I had a stethoscope & blood pressure cuff. And I had to supply my own gloves...

I picked up a cheap set for around 20 bucks. And then the nurses all brought their own, anyway.

One time when I was in the hospital with a fever they had me on a water cooled mattress. The good thing with me, unfortunately, is that I can't feel the temperature on most of my body.

Even if it's a warm bath, it's going to be cooler than her current body temperature.

SharonMV said...

Elizabeth, I think you should check with a doctor. Is your GP back from his trip. If the fever & drainage continue, you may have a bacterial infection & need antibiotics. It's past flu season, but you might have a URI (viral upper respiratory) that is worse than the usual cold. I get constant viral URIs and sinus infections/bronchitis & fevers because of my immune deficiency, so I always need antibiotics. I've had a fever for 2 weeks because of the latest infection & Lupus flare (also causes fever), but I can sweat & take meds (and lie on ice packs) to deal with fever. so I'm very concerned about you having the fever. Also having any chronic illness can make your immune system less strong, so I'm worried about the cold leading to a secondary bacterial infection which will need antibiotics.

Linda, if Elizabeth still has the fever after 3 days, or drainage is yellow-green (ucky, I know) & continues, please try your best to get Elizabeth to a doctor. If her breathing becomes worse or she develops a cough, the hospital may be necessary. I may be paranoid, since I deal with so many respiratory infections, but if Elizabeth does have more than a cold or the cold leads to something more, it's best to get medication started right away.


Evil Lunch Lady said...

Maybe a trip to the doc maybe needed? Feel better fast!

Lisa Harney said...

Best of wishes on this cold leaving the two of you alone.

Best of wishes on it being a cold (and it sounds more like a cold).

Mark said...

Take her to the hospital. Sounds like she's stubborn to the danger of her own health and well being. I took care of someone with Dysuatonomia who presented with symptoms of pneumonia only when things were at their most serious. In other words by the time it was obvious that she had to go to Hospital it was often very close to too late. My friend hated the hospital, so much she would beg not to be taken in and after when we got there she was often within an hour or so of dying. She has many of the same symptoms

I know that it's very hard for any strong person to admit that they are at all weak and need help and thats something I have found being very common in this blog . It also sounds like Liz is willing to disregard what she knows to be in her own best interest to prove a point that does not need to be proven. She might not like it if you took her to hospital. How would you feel living with yourself if something permanent happened and you realize if you had listened to your own head as opposed to someone else's denial that person would be in better permanent shape / alive today.

Eventually my girlfriend and I broke up and someone else had to deal with making that final decision. I'm glad in the end it was another guy and not me because he has to live with the thought of if he's responsible for her death and not me.

Lene Andersen said...

I'm voting for a tepid bath, too. Except not sure why that would help better than ice - maybe the full-body submersion? Is your GP back yet? Maybe he could help?

Thank you for writing so openly about your fears. Big hugs to you both.

There's a postcard on its way and I'll be emailing later today.

Michelle said...

If the fever cannot be controlled by tylenol and ibuprofen, then you need to seek medical attention. Also, for quick control of fever spikes, ice packs under the neck and armpits quickly lowers the temp of the blood flowing to the brain and therefore decreases the risk of brain damage. Back of neck is first priority, under the arms is second. (I am a paramedic and that is how we treat fevers, ibuprofen and ice packs)

Veralidaine said...

Beth, I so hope you feel better very soon! I don't know how to break a fever without sweat except for a cool bath perhaps? But Linda says you hate that.

I'm late to the party, but instead of inflicting pictures of crazy Libertarians on you, I have returned from the weekend with some cemetery flowers for you, Beth and Linda:

shiva said...

Sending all possible good wishes Elizabeth's way...

I remembered what i wanted to say on the post the other day about flying - when Kafka wrote Metamorphosis, he forgot one thing - that beetles can fly...

Elizabeth McClung said...

Linda says...

Wheelchair Dancer: Here's hoping we can figure it out.

Cheryl G: We've avoided the bath so far, and Elizabeth agreed to go to bed last night in the cooling vest which helped her for the first few hours. She wanted the homecare gal to get a few hours sleep.

Tammy: Thanks for your healing thoughts. I'm not as tired today as I was yesterday because we had homecare stay over last night. This meant I got to sleep uninterrupted in the living room. I'm feeling ready for another night. Hopefully it will be a better one for Elizabeth.

She was feeling well enough to take a short roll to the video store this morning. And depending how she's doing may even write the blog tonight.

saraarts: Yeah, I'm hoping I don't get it. I was happily surprised she didn't catch what I had when we first got back from Japan.

a bear in the woods: That's not a nice thing to say about your grandmother. Sounds like she may have been quite the character.

Neil: Thanks for the permission to forward the photos, even though you've done it all.

If we do go the bath route, I'm planning on starting with warm water and gradually making it colder otherwise I'll have mutiny on my hands:)

Racoon: I'm looking forward to seeing the pictures. I'm curious to see how they turned out. I misplaced my manual and just found it a couple weeks ago - after I needed it. I wanted to do the thing where it takes the picture in black and white and then accents one colour. Thought it would be great for the cherry trees in Japan. Alas, wasn't to be.

Yeah, warm bath definitely the way to go.

sharonmv: thanks for the caution and the advice. I'm keeping an ear out for the sound of her breathing. Last night she was running clear.

evil lunch lady: I may make an appointment tomorrow if there's no improvement.

lisa harney: thanks for the well wishes. We hope it will leave us alone soon too.

mark: Geez, Mark. You trying to give me the guilts? Sounds like you had a rough time having to make difficult decisions. I hope your ex is doing well health-wise.

lene: With the tepid bath we're trying to avoid the shock Elizabeth easily slips into when cold packs/vests, etc are applied to her.

michelle: thanks for the tip about ibuprofen. She has 1 aspirin a day to help with the blood flow. I also think there's ibuprofen in the neo-citran. But maybe another one would be fine too.

I bought more cold packs yesterday and one is a long narrow one to put on the back and sides of her neck. The trouble with the armpits is keeping the packs there. Bit difficult if she's sitting up and using her arms.

Veralidaine: thanks for the well wishes and the pictures.

Shiva: Thanks for the well wishes. Kafka's definitely more of Elizabeth's territory than mine so I'm sure she knows what you're talking about.

Victor Kellar said...

Hi Guys

Hope Elizabeth is doing better, sounds like some good advice being given

Just wanted to say that I got my post card today, thank you so much; shrine maiden, very cool. Just have to decide which of my kantanna she is going to bless

Linda: Reading your comment about the photo effect, isolating one color amidst the B&W. This can be done with Photoshop fairly easily as well as some other photo programs. If you don't have photoshop (and you should, you take great photos) let me know and I could send you a copy with the video editing stuff I'm putting together for Elizbeth

Neil said...

Hi wonderful Goth ladies:

I thought of something on the way home from work. Rubbing alcohol applied externally might help cool Elizabeth's fever. It MIGHT be easier on her than a cold bath, but I'll leave that for you two to decide.

Elizabeth, a postcard arrived today, with a cute photo stamp of you attached. I love u too dear, but who's the kid beside you in the photo? Cradle robber! :)

SharonMV said...

So glad that Elizabeth is feeling a bit better - hope that trend continues. Thank you Linda for posting an update. Glad you got some sleep last night.


Donimo said...

It sounds like you've turned the corner with this. Thanks for keeping us posted, Linda, and thanks for letting us know how you're feeling. No doubt you're scared. The two of you are walking/rolling quite the edge most of the time.

I hope this fever passes, and if not, I hope the two of you get some good medical help (at least for this anyway). I'm so sad that so much of this is a guessing game where you can't rely on the doctors to guide you through it. I'm glad that readers have been able to give you some direction. I'm thinking of you both...

Tom P. said...

My dear wife Michel suggested that you have ibuprofen suppositories on hand (or tylenol suppositories). They work much better than taken orally. You may need a prescription so see the doctor.

Ice packs in the groin and armpit (still Michel's advice) will help bring the fever down. You can get ice packs with elastic attached to them to hold them in place. Michel was an RN on an oncology unit who were on all sorts of chemo drugs that compromised their immune system.

And Michel told me to add that she is very worried about Elizabeth. Did you get my note about contacting Johns Hopkins Hospital in Baltimore?

Maggie said...

greetings: I hope Beth is feeling better. A couple of thoughts if Beth still has a feaver the tepid bath may work best. Ice packs under the arm pits and groin are a close second. With the fact that Beth doesn't have the ability to normally regulate her body temperature or sweat, I'd be careful before using rubbing alcohol. If you do, I'd use very small quantities and again just on her armpits and groin area (maybe wet down a cloth and rub her armpits and see how she does). Because it will evaporate quickly you could send her body into shock faster than you realize.
If at any point her mucus discharge is green or yellow she must go to the doctor. This is an infection that will need antibiotics, most likely and if accompanied by a cough it might progress to bad respiratory mojo.
Big sister, EMT Maggie has spoken. Don't make me get on the boat and come kick your ass again!

Thanks to everyone for the nice comments about the pictures and

yes, victor, you may use them for your Elizabeth celebration!