Prescription for Disaster

Friday, 3 April 2015

Sick Guilt Help: how to make everything awkward in 10 easy steps

I hate asking for help. Hate it hate it hate it hate it hate it. I'm terrible at it, and any request for help comes with so much heaping self-guilt that it's often just not worth it and I end up half-killing myself to do it on my own. 

This unfortunately also applies to my health - and last week I was in desperate need of help.

It started with Alan and Shirley, two of my colleagues, coming over to stay at my house to help me with my kids and disease (I know, I know) while my husband was away.

And here is how I made everything excruciatingly awkward in 10 easy steps.

1. The Dress Code

When I called them, I was in my pajamas, teeth unbrushed, hair wild and surrounded on my bed by a tissue graveyard of sadness and phlegm.

When they arrived, I was wearing clean yoga pants, a nice sweater, a bra, socks and makeup. I even did my hair. I'd brushed my teeth three times to get rid of 'sick breath'.

So when they rushed over to me on my deathbed and I opened the door I looked better than I do most days at the office.

2. The House

When I called them, I was still lying atop the aforementioned tissue graveyard in despair and desperation. My kids room looked like a bomb, the dishes were still on the table and counter from the night before and the upstairs loo had no toilet paper. 

When they arrived, my room was clean, the kids' beds were made, laundry was put away, the dishwasher was running and I'd shuffled around the living room dryheaving and crying in order to vacuum before their car showed up.

So when they rushed over to me on my deathbed and I opened the door they were greeted by Martha Stewart.

3. The Kids

I needed their help with the kids, as I just couldn't handle working from home AND getting the kids to and from school without use of the car (I can't drive here yet, Stroke) So they arrived at the door and I welcomed them in on my way out to walk the kids 1.5 miles to their school and back. I'd already made the kids beds and gotten them ready for school, lunches packed and pick up instructions arranged. 

Come on in guys and make yourselves at home. I'll be back in an hour and a half.

4. They're still guests

Even though I've asked someone over to help, they were still guests. Dying as I was, how could I at least not make them a cup of tea? And some lunch? And a nice dinner of fresh pasta with a homemade cream sauce and foccacia garlic bread? WIth a nice salad?

I at least let them help with the dishes afterward, but this was more so because I had passed out in a chair after sitting down to taste it.

5. I'm so sorry

It may be unhealthy, but I tend to associate gratitude with guilt. Friends offered to come by and drive me to the hospital, but I felt too appreciative of their thought to possibly accept it. After having slept upstairs for an hour in bed while my colleagues were downstairs working at my dining table and entertaining my kids I lay there, staring wide-eyed at the ceiling above me. 

I can't be lying here while they are downstairs with my kids. It's just not right. I could really use the rest, though. I can't just do nothing though. Maybe I'll just give the washroom a quick clean. 

Okay, that's done. But while I'm here I'll just maybe throw in a load of towels downstairs. Then go play with the kids. Make them all some lunch. Or a snack. Maybe set up a proper little tea party for the kids. Check my email, respond to a few. Okay, yeah. I'll do that and then come back up to rest.

And this is how Alan and Shirley found me halfway down the stairs, clinging to the banister for dear life, panting like a wounded water buffalo and apologizing profusely to them for having them take care of my kids. They dragged me over to a living room chair, where I then sat and apologized every time they walked into the room.

6. Kids: food, water, play

The kids had been fed and watered, but were desperate for some attention and playtime. Usually I'd hand them the wiimote and tell them to have at-er with Netflix, but not when people were over!  Instead, out came the bane of all sick parents - play-doh and Lego.


I threw out half the play-doh as I kept sneezing in it. I was horrified when Shirley got underneath my dining room table with a cleaning cloth to collect the play-doh shrapnel from under the table and chairs, prompting me to dive down onto my knees to do the same while saying 'I'm so sorry about this, you didn't have to do that, I'm sure the dog would have gotten it. I'm so, so sorry.'

The Lego then came out and I was guided back to my old-man-sleeping chair in the living room. I woke up just in time for the clean-up, and again dove to my knees to help with the gigantic collective explosion of Lego - with the idiotic, ass-hat suggestion that while we were cleaning it up anyway, we may as well sort it into color coded boxes. 

So Alan and Shirley had basically come over to watch me feed my kids and to sort through their Lego for, not kidding here, 2 hours.

7. I don't really take sick days at work

So Alan and Shirley worked from my house, with me and my raging illness and disease. How considerate of me, I know (hey, I made them a really nice tea!) Even according to them it was one of the most singularly productive work days of their professional lives - even with me cooking, cleaning, hacking and passing in and out of narcolepsy throughout. 

So out of the kindness of their hearts, they had come over to my house to help me out and I worked them harder than I do at the office.

8. It was time to finally go in to the hospital

There was no more avoiding it, I was flaring out of control and something had to give. I either would go to the hospital or, what gave would be me. 

Paul got home from London, walked in the door and rushed upstairs to check on me, after I had been forcibly put to bed by Alan and Shirley (very forcibly) and I jumped into panicked apologies for having worried him so much (he thinks I'm insane with this stuff - I'm pretty sure a therapist would have a field day with my guilt issues). I felt terrible. Terrible that he would have to drive me to the hospital, and likely wait with me. Terrible that he would have to drive Alan and Shirley home. Terrible that he was likely tired and terrible that he had worried about me during his time in London. I also felt terrible that I had let myself get to this state, despite promising him that I would have gone in to hospital much sooner.

He dragged me out the door, cutting off my frenzied apologies to Alan and Shirley after he helped me to lace my shoes as I laid on the floor. I'm quite sure I even apologized to my dog.

I can't help it at all, I feel so guilty when I'm sick. I'm being told right now by my husband that this isn't normal, but I'm not buying it. 

9. At the hospital 

The A&E doctor came to me within the packed ebola-breakout stadium style emergency room and I apologized (of course) for taking up so much of his time and bringing such as rare disease to him when he was so busy.

'Candace...' muttered my now getting impatient husband.

'Sorry. Thank you doctor, I really appreciate your help.'

'Caaaaandace...' came a warning growl from my husband.

The doctor assured me that it was fine, it's nice for them to deal with something different now and again, not to worry, they will get the right people in place to fix me up.

'Oh thank you, I'm sure it's fine and I'm just making a big deal out of nothing.'


Again the doctor assured me that it was fine - he was just going to have someone take my blood pressure -

'Okay, no worries - I'll do it!'


Fiiiiiiiiiiine Paul. I'll just lay here and be sick.

For like, a week. I'd like to say that next time I'll take the help with grace and appreciation instead of apology and embarrassment. That I'll let people just take care of me and stop worrying so much about what everyone else needs at the time. That I will just let Alan and Shirley nurse me back to health or better, drag me into the hospital.

But I won't. We all know I won't.

10. Next time I'll probably also make them scones.

Thursday, 2 April 2015

The Irish Hospital Incident

I’m not really sure where to start with this one, the entire stay in Irish hospital captivity has been so on-par with my usual level of bizarre that it’s a bit alarming. Not in itself, more so in the realization that this is destined to follow me wherever I go.

Where to start?

Well, my cat died.

I’ve blogged about our adorable, wonderful kitten Princess Zelda before, and have shared much of our too-short journey with her on Facebook. The jist of it is that we got her from a family home breeder for Maine Coons, not a proper, documented breeder. We didn’t know that there would really be a difference until we drove 1.5 hours to pick her up in Chippenham, and paid for a ‘rescue’. The poor thing smelled awful, had an eye infection, was sneezing and had such horrific ear mites (we didn’t know what they were at the time) that it looks as though coffee grounds were pouring out of her ears.

Well, we got Huar Huar off the street and Dermot from a restaurant menu, so it’s not like I could say no, despite Paul shaking his head frantically in the background.

We took Zelda home and immediately to the vet, and to the vet nearly every week thereafter.

We wanted so badly for her to make it, our lives became about fixing her in any way we could. Medication, steam showers, love flowing over her like you wouldn’t believe. Hydrating her with a syringe, sucking boogers from her nose, keeping her warm and the kids carried her around like a dolly while she just sat and purred in their arms.

But it just wasn’t enough.

See, the physiological reaction to stress (adrenaline, raised heart rate, rapid breathing, chemical release, etc.) can, in extreme situations, send me into a flare. I have gotten good at controlling it, but life doesn’t always go my way.

Earlier in the week I had started to feel a bit of a cold coming on. It was slightly alarming as I had had a chemo infusion a couple days prior, and had pushed myself harder than I should have. No matter, life doesn’t stop for a cold. Paul had a funeral to attend in London and he was reluctant to leave me with Zelda still at the vet and my showing signs of a cold, but it was important to us and he left to support a friend, as you do.

Well, things went downhill rather quickly once he got on the plane. My cold suddenly turned from sniffles to deep coughing and a bit of flare pain – this did not look like it was going to be good. My team in Ireland graciously came to work from my home to help me out as I walked 2.5 miles to drop off and collect the kids from school on Friday, then we worked like demons at my kitchen table until I got a call from the vet, Zelda could come home!

Thrilled, Lochie and I went to pick her up. She was mewing (for the first time!) and happy, though still not out of the woods yet. Fine, we were just happy to have her back in our arms.

But it didn’t last.

Around 9pm I screamed while on the phone with Paul. Zelda had been cuddling me under my chin and had suddenly went wild and scratched her way across my face and hair in a violent circle yowling and spitting at me. I sat up, holding my bleeding face and turned on the light as Shirley and Alan, who had been staying over to keep an eye on my sickness, burst into the room. Zelda was going crazy, spinning in a left circle clawing her way around my bed, then falling off with a thump and spinning around on the floor drooling and foaming at the mouth. It was terrifying, and as Kaitie ran into the room I wrapped Zelda up in a towel so she wouldn’t see it.

This was particularly hard for me to watch, as it was like seeing myself when I had my cerebellar stroke – it was the same loss of control and spinning to one side violently.  I choked back my emotions and we flew into action, finding an all-night vet to open for us a few towns away and Alan and I calling a taxi. We were so desperate to get her to help as I gripped her in the towel as she tried to maim me, howling like Satan himself as she did, that we threw on our shoes and ran out into the night to meet the taxi down the wooded lane just to get there moments faster.

It was Alan’s birthday, by the way. Happy birthday Alan. My bad.

We eventually made it to the vet, but it was too late to save her. She was having violent seizures every two minutes, had gone blind and deaf and had lost control of 2 of her limbs. She didn’t know where she was or who I was. I called Paul and we decided to hit her with everything they could – sedation, antibiotics, steroids (sound familiar?), she deserved to live.

The vet figured it would be worth a try to turn out the lights at one point to see if that calmed down the seizures, but all that happened was a feral, hysterical cat getting loose from the towel with us in a dark room with no windows, yowling and spitting like a demon. Alan heard us screaming from outside the room and opened the door to flood light on the two of us clawing at the walls looking for the light switches.

I sobbed through it, but there was nothing that could be done. The vet assured me that nothing was able to help her at this point, she was already ‘gone’ and all we could do was to make it painless.

So we did.

And it broke my heart as she was sedated and euthanized in my arms.

We tried. We really, really did.

I felt like a monster. I still do.

It’s hard to lose a family pet – but it was harder in my own mind, as she didn’t even get a chance to live. She died at 17 weeks old.

It gets infinitely worse. Her cause of death – an aggressive granulomas disease that shut down her organ functioning, including her brain, and caused a final stroke.

My kitten had my disease. And I killed her.

We went home, and my system went into meltdown. At 4 am I woke up in excruciating pain in the tops of my jaw, having to stumble for my morphine pills to try to settle it down. I texted Paul, but wouldn’t go into hospital until he was home for the kids, despite Alan and Shirley’s protests all day to go. They again wonderfully stayed at our home all day to look after the kids and I throughout my intense ‘sick guilt’ (a post for another day), and even other friends in Ireland threatened to drag me into hospital at Paul’s insistence.

I didn’t go. By the afternoon I was choking on the stuff coming up from my lungs and delirious with flare pain, but I still didn’t go.

I went as soon as Paul got back, and I’ve been in captivity for 5 days now.

I had read and heard about the extreme bed shortages in Irish hospitals, but had never in my entire life experienced anything like this. I’ve been to hospitals in Canada, America, Hong Kong, China, the UK and now Ireland – and this A&E completely blew my mind.

It was PACKED. We waited in the waiting room for about 40 minutes, which alone was a bit weird for me given my history. It was made entertaining, however, by the family of outrageously loud, obnoxious and gangster like Roma Gypsies playing violent rape-sounding music videos on their mobile phones with their feet up on chairs, shoes off and treating their wives and mothers like trash servants. This greatly disrupted the Sunday Morning Mass broadcasted on the big screen waiting room TV, a source of great distress for many in the waiting room that were too afraid of the Roma’s to say anything. Except Paul. I kept shushing him, sure he would be revenge murdered in the parking lot.

Regardless, we were brought in and passed through the A&E lined with beds so packed they were touching each other, the hallways lined single file with people being treated in armchairs and others waiting in some sort of holding pen hell of plastic backed office chairs connected to IV’s and casts.

It was like an EBOLA breakout makeshift stadium hospital.

I was brought in and checked over, the usual spark behind the student doctor’s eyes when they start to realize what they were seeing. Consultants were brought in and talk of rushing me to a ward, but I’d have to make do in the A&E until that could happen. No worries.
I was in a hallway armchair for 13 hours, hooked up to oxygen, steroid and antibiotic IV’s.

Not the safest or most sterile place to be for someone on chemo, even though I was wearing my SARS mask.

The treatment was fantastic and the doctors were great, it was just the environment that was lacking, and after 13 hours I was starting to lose it. The pressure building in my head from Neurosarc was hitting dangerous levels and I was debating making a nest for myself on the floor under my chair of blankets, toilet paper and my hoodie just to lay down and gain some sweet pressure relief. I told this to the nurses – they would try to find me a trolley bed, but some people had been waiting in chairs since SATURDAY (this was Sunday evening already), and there was a queue.

Captivity Journal Hour 10: am loving the oxygen, though my captives still won’t let me leave. They claim a ‘head consultant’ a cometh, though this may yet be as mythical as the Loch Ness Monster , London All Night Pharmacy and the Portrane Public Bus. Med students eying me up like fat kids outside a candy shop.

I’ve been given a cookie, though no instructions on how to eat this while wearing an oxygen mask. First attempt went quite badly, having inhaled cookie crumbs to already damaged lung. Suspect they are now keeping me as cannot trust me to preserve self.

Also sneezed in this thing. Quickly learned why you’re not supposed to do that.

I became desperate, and decided to self-discharge to fly back to London to go to my regular hospital there. The nurse wasn’t happy about that, and ran to get the head nurse, who said it was too dangerous for me to do that. She refused to take out my IV line, but changed her tune when she saw me watching youtube videos of how to do it myself and asking an intern for some gauze and tape.

She miraculously found me a trolley bed (I’d also fired off an email to the Irish Independent, which she also noticed over my shoulder).

Laying down on a tiny trolley bed in a packed and germ infested A&E was absolute bliss. I dared not complain, so many had it so much worse and the relief was immediate and sweet. We were lined up morgue style –

with all the beds touching and consultants only able to speak to you from the foot of the bed, nurses reaching over other patients to treat us.

It was feeling pretty Serbian down there, but I didn’t care. I was being treated, and getting exactly what I needed. Despite the hacking guy with pneumonia lying so close that our hands were brushing against each other. At least he was a nice guy.

After 29 hours in A&E, a bed on the rheumatology ward became available and I was zoomed up and the typical routine of non-stop consultants and med students commenced, each barely able to contain their excitement at what they were seeing. I continued to apologize profusely (it’s just in my Canadian blood) for using up so much of their time and resources during such a horrible bed shortage, but the head rheumatologist assured me that I shouldn’t apologize, they so rarely get an opportunity to see something like this.

Then the hospital REALLY took it up a notch.

They got in touch with my specialist team in London, who used to lecture at the teaching hospital here incidentally, and they want to joint-manage my care ongoing, as I’ve recently come to the area and it is likely that I will be there often.

Even though I had already been treated to suppress the majority of the flare, they wanted to do baseline CT’s, MRI’s, neurology consults, ophthalmology, immunology and pulmonology consults – so that they could deal with me appropriately and effectively the next time this happens to me.

I was assigned a nurse. A NURSE. In my ward room of 7 patients we had two students and one nurse in the room at all times. Adjusting my oxygen, pumping me full of steroids and antibiotics, interns were assigned to collect my notes from my five various London hospitals, with my main notes from the Royal Free. They were thrilled that I was happy to meet med students to chat and I spent TWO HOURS with their lead neurologist doing the most comprehensive examination and talk about my stroke, my neurosarc and everything in between that I have ever, EVER experienced.

They even discussed with me if I’d like to move my infusions to their hospital team so I wouldn’t have to travel to London and risk infection again (I have been instructed to wear a face mask the next time I fly or travel directly after chemo infusions).  I’m not ready for that as I don’t want to lose Dr Beynon, but will be speaking with him about it when I see him in a few weeks in London.

The hospital itself, once out of the A&E hellhole, was phenomenal. They made room for a bed for me on the ward, and gave me a bell to ring the nurses if I needed anything.

Or if I wanted to call for Florence Nightingale.

As usual I was productive and my friends were wonderful. Paul brought me the Xbox.

Dai Kai sent one of our team leaders from London to surprise me, and to reassure him that I was going to live as he couldn’t make it himself.

I hobbled back down to the A&E waiting room so I could get internet reception to blog and finish legal documents for work that were due the next day. I took conference calls from my bed on oxygen and even hired someone from my bedside (awkward, but time was of the essence!)

Paul jailbroke me this evening to go for a pub dinner with him and the kids, and I’m waiting, begging to go home. They have killed the flare, and the infection is nearly dead as well.
And my roommates are getting to be a bit much.

One clipped her toenails with scissors. I was hit by one from across the room.

Another prayed for me at my bedside with the daily communion woman.

Having a shower on the ward was akin to be sexually assaulted by the way too close shower curtain. I spent more time batting it off of me than I did washing my hair, and in the end I didn’t know if I should press charges or leave a tip.

But then this woman happened:

A Polish woman, speaking no English whatsoever, was brought up to our ward. Her daughters were with her, obviously convincing her to stay and listen to the doctors and nurses, they would see her tomorrow.

She was PISSED.

This woman was passive aggressive to the extreme – refusing to interact with the nurses or doctors, scowling at the rest of us and refusing to take any medication at all. Fine, her choice, whatever. But then she refused to sleep. REFUSED. They tried getting translators, but she wouldn’t talk to them. They got her daughter on the phone, but she refused to speak to her. The nurses were begging her to lie down and go to sleep, so the rest of us could sleep as well.

Now, as she refused to use her bed, I was awoken at 4am by the sound of her scraping her chair over to MY bed.

Yes, that’s my knee and that’s her beside it. You know, just to hang out and stare at me over my shoulder like a creeper.

I was initially alarmed that she was coming to join me, so I aggressively star-fished. The nurses returned to talk to her gently, trying to persuade her to leave my bedside and return to her own. No dice. They even tried to pull my curtain around me but couldn’t get it around her chair as she HUNG ON to the end of my bed rail, determined to stay where she was. After about 10 minutes of them pleading with her they forcibly dragged her chair away from my bed as she rocked me back and forth in a clawing and defiant attempt to stay put.

And yes, I genuinely considered a flatulence based defense.

She then camped out in the toilet next to me, which the nurses also weren’t okay with. Another 10 minutes of lights and her yelling with while they convinced her to leave the loo to finally return to her bed. She still refused her bed (seriously, patients in A&E right now would KILL for that bed) and sat up in her chair, staring at me and the patient across from me (who was equally creeped out) until the nurses closed our curtains again and made jokes with me about Rohipnol.

She’s now back in the bathroom giggling like a lunatic.

I think I’m going to hold my pee for now.
Nope. Can’t do it. I’m going in.

Pray for me.