Wednesday, June 29, 2011

Stimulating

   
To frame the following story, I should mention that I haven't had caffeine for years. Even when I did partake of caffeinated beverages, they barely qualified as such. I’d wave a teabag discreetly over the cup and friends laughingly refused to call the resulting pale liquid tea. Then someone told me that hot water with a small slice of lemon was really good for heartburn/an acidic stomach (a frequent side effect of RA meds), I tried it and discovered how true that was. That was the last time I had a cup of tea and was probably at least six years ago. Since then, the only caffeine I've had is whatever they put in Tylenol #2s to keep you from falling asleep instantly from the codeine and I suspect that doesn't really count.

Despite being uncaffeinated, I still have a fair bit of energy. OK, so I bitch about not being able to deal with The List, about fatigue issues, Mandatory Rest Periods, being out of spoons, etc., but if I look at it relatively objectively, I do accomplish things. I don't often look at it objectively, but am lucky (a-hem) to have others in my life who do that for me. My mother is always telling me I should do less and The Boy frequently talks about coming over to sit on me so I won't work and about how he has having trouble keeping up with me. I laugh when he says this, thinking it a grand joke that Mr. Ablebodied has trouble keeping pace with the disabled woman. He's told me that he might push the argument a little for effect, but really, it’s not that much of a joke. At which point, I snort and go back to work.

Last week, I got sick. Specifically, I got sick on Monday. Because Monday was the first official day of my vacation and of course I’d get sick on my first official day of vacation. It started out as being really tired and fuzzyheaded, but by the time Wednesday rolled around, the gastrointestinal extravaganza entered the fray and things got really interesting. The kind of bad that actually involved a fever that broke Saturday morning - I don't remember the last time I had a fever, nevermind one that required breaking - limbs like overcooked spaghetti, needing a nap after being up for an hour or two and not having the energy for conversation. Me not having the energy for conversation is like a teenager getting out of the bathroom in 2 minutes. Unheard of.

Saturday morning, we went out to buy Ontario strawberries and wandered through the supermarket finding things I might attempt to eat. I’d discovered raisins when I got up, which were a very good introduction to food after a good 60+ hours of virtually nothing. And it was in the supermarket it really became clear that I might have turned the corner, because the craziest things made it into our basket. As we wandered down the drinks aisle to get something for David, I discovered a-six pack of slim cans of Coca-Cola. Not the wee stubby ones that came on the market about a year ago, but smaller, thinner versions of a regular can, with about 100 calories worth of drink in them. I needed them. Haven't had Coke in ages, not since before the switch to no caffeine, but they were so adorable that I couldn't leave them on the shelf all alone. I mean, would you look at the cuteness



It’s a Cokette!

Brought them home, put one in the fridge, forgot about it until Sunday morning. Where after my shower, I was yet again as limp as a pile of noodles and had sludge for brains. The Boy opened the Cokette for his morning shot of caffeine and I had a sip. Giggled at the bubbles that fizzed through my mouth – did it always have that many bubbles? - munched on my breakfast, had another sip or two and started talking about going back to bed because I felt exhausted and….

And then the caffeine hit my bloodstream. 

Hello! 

All of a sudden, my brain perked up, I could think, felt as if I had actual energy and although I was aware that underneath the top layer of perky, my body was still weak as a kitten, it didn't matter. Because I wanted to do things. Talk. Maybe take a look at editing the next chapter in The Book (languishing since last Wednesday morning when things Went Bad). Go for walk. Bother the cat. You get the idea. The inevitable marmalade/raisins/pop sugar crash was even nicely cushioned by the caffeine, made into more of a glide and there was a nap soon after, but whoa, Nellie!

I'd forgotten about caffeine. This is legal? This is legal! Do you know about this? I guess you do - otherwise, why would people be lining up at Tim’s every morning for coffee, but really! Why didn't someone tell me about this? Why don't I do this more often?

Can you imagine what I could get done if I caffeinated myself on a regular basis?
   

Friday, June 24, 2011

My Best Friend

   
Jenni over at ChronicBabe chose "My Best Friend" as the theme for this week's Blog Carnival. At first, I was going to skip this one - I am in the extremely lucky position of having several people in my life who qualify as best friends. Choosing only one didn't feel right and writing a post about why I love tem all would have kept you here until tomorrow. And then it came to me. The friend that gets there even before the closest of my other best friends.

My body is my best friend.

Odd? The woman with RA and fibromyalgia, wheelchair user since the age of 16, the one who lives with high levels of chronic pain and disability and I could keep this going for a little while, but that would get boring and prevent me from getting to the point. So yes. That woman. Me. I consider my body my best friend.

I didn't used to see it this way. For years - decades, even - I hated my body. For all the reasons listed above, for betraying me, for the weakness, the pain and for all the things I couldn't do because of it. I hated the way I looked, hated the deformities caused by my RA, hated how my exterior didn’t match my interior idea of what I looked like, how I moved. Hated it so much that I cut myself completely off from it, described myself as a brain in a jar. I was my personality and only that - my body was not part of who I was.

And then the big flare hit and the Biologics gave me back my life and it made me see the world in a different light. Living inside a miracle every day has a way of expanding your horizons, challenging your preconceptions. There was a lot of work around gratitude, finding peace and true happiness in a small life, not knowing that it would continue to grow. Somewhere within that journey, I began to see my body as my partner in it all. Began to realize just how much my body did for me, carrying me through every day with some pretty significant challenges. Began to see that the enemy was whatever triggered my immune system to attack itself, not the body that couldn't stand up to that. Because if an autoimmune disease is as mysterious and unknown that the medical profession still do not know what is, although it can suppress the activity, still cannot fix it, why would I expect anyone, including my body to be able to withstand the assault?

That's when I started listening to my body, to what it had to say. I have memories of moments where I remember opening up and hearing it crying the way I wanted to cry, hearing  it tell me that it was trying, was doing its best and I realized that hating my body, blaming it and accusing it of betrayal meant hating myself. That is when I realized that my body and I are partners in this life, that we support each other, that there is no separation between me and it. We are a whole, a unit and together, we get up every morning and we get through the day. Some days are good and some days are less good, but when I go to bed, I try to remember gratitude towards this, my best friend.

A best friend supports you, helps you through the hard times, celebrates with you in the good times, smacks you upside the head when you're doing something stupid and makes this life possible. Every day, my body supports me to do what I want to do, enabling me to do the work I love, to be there for my family and friends, to take care of an animal and to love my favorite man in the world. On the hard days, my body gets me through, complains with me, sometimes cries with me, but regardless of what has been thrown our way, it has seen me through to the other side. There are times when I should be in a lot of pain because I do too much, but it somehow takes it on, absorbs it and allows me to be free to do what needs to be done. Afterwards, it smacks me and sometimes hard to remind me it was unwise (the sinus infection and gastrointestinal "adventure" I've had this week qualifies as a well-deserved smacking from taking my body for granted for entirely too long). And in the good times, we celebrate together, feeling the freedom and joy that comes from well-managed pain and a sunny day.

I couldn't do this without my body. Without my best friend. And for the first time in my life, I try to be a friend to it, as well.
   

Monday, June 20, 2011

7 Habits of A Reasonable Life

  

Hello, world. So nice to see you again - have you lost weight? Got a new haircut? Whatever you've done, you look fabulous.

I, on the other hand, probably look like I've been dragged through a hedge backwards. Twice. The last two or three months have been hard and crazy and utterly unreasonable. I developed bad habits and am so tired I could sleep until Thursday without waking up for pesky things like food and bathroom breaks. However! As of 2:17 PM Friday afternoon I've been on vacation and am not going back to work until after the July long weekend. Just as soon as I catch up on my sleep, I'll be really excited about it. So far, the most I've managed to do in terms of celebration is to when people ask me how I am, reply "I'm on vacation, how are you?" I suspect that may get annoying really soon.

After spending the weekend puttering and watching season four of The Wire, the fog has started to lift and now that I actually have time to think about things other than the next thing on The List, I've become aware of just how unreasonable things have been:. So I set myself a goal for my vacation (because work mode is apparently still so prevalent that I must have goals). Namely, to work on creating habits for a more reasonable life. To wit: 

1. Don't go to bed with more than 10 tabs open in my browser 
This one was sparked by a catastrophic crash of Firefox in the middle of last week. I lost close to 50 tabs and instead of being horrified, I felt only relief. That many tabs open and waiting - lurking? - weighs you down. It may not feel like you're aware of them, but on some level, the stress of not dealing with the craziness gnaws away at you. I'm not sure I can keep this one when I go back to work, but it has occurred to me that this thought is my not-so-inner workaholic already working on an out so I can go back to the unreasonable. 

2. Singletask whenever possible 
Talking on the phone while reading e-mail is rude to the person you're talking to and means you don't absorb what the e-mail’s about. Writing an article while answering questions on MyRACentral, tweeting and/or assessing the state of The List does nothing but convince your body that you're in a state of emergency. Body will likely get pissed off and respond by making you sick. 

3. Do not work while eating 
I know I'm not the only one who eats breakfast or lunch while staring at a monitor, madly skimming through a document that has to be read and now seems a really good time since I can't use my hands for anything other than holding food. Saturday morning, I caught myself preparing my toast and heading back to the computer. Managed to stop, make myself turn around, sit at the table and eat my toast while not doing anything but eating my toast. Well, I was thinking. Started planning this post, actually, but I decided that's okay. Because it's in moments of quiet that your brain generates ideas. Conclusion: get more moments of quiet. 

4. Make time for having a life 
Falling off the face of the earth and going incommunicado to loved ones is only allowed for temporary periods of insanity during big projects.
Don't work after 9 PM.
There is too time for a cuddle with the cat. It might even function as a break to regain perspective/sanity.
Reading a book while making lunch, brushing my teeth or cleaning is a Band-Aid that does not negate the need for time to sit still and breathe. Or to sit still and do nothing but read a book. Preferably in the park.
Go outside once a day (this rule to be amended when winter hits to prevent frostbite). 

5. Meditate 
Thinking that I can't find 20 minutes in a day to meditate is ridiculous. Until I get over myself, start with 5 minutes. Remember that technique doesn't matter, but, in the immortal words of Jan Carstoniu, meditating essentially boils down to the following

Sit down
Don't move
Shut up

Do that. 

6. Take one day off every week 
This one is pretty ambitious. I have to work in chunks or my pain levels go through the roof. My body won't allow more than 3 hours during the day and another hour and a half after dinner and when you end up with for, five or more jobs (MyRACentral, the blog, The Book, misc. committees, etc.), squeezing it all means working every day. Perhaps I should amend it to "take an evening off once a week that does not involve The Boy having to come over to sit on me so I won't work." I'll start with that. 

7. Re-read this list on a regular basis until it sticks 
Be prepared that it may take a long time before I learn this. Remember that trying counts.
   

Friday, June 17, 2011

Dog Heaven

   
Woofstock wasthis past weekend and as usual, we immersed ourselves in the canine world.

This one believed in testing the water before drinking. Lucy often does the same thing.


One got an accidental mouthful while communing with its peeps


The fountain was a big hit. A Jack Russell jumped in over and over again to catch the bandana it wore around its neck.


Another liked the Woofstock-supplied duckies


There was basking 

 

And a Newfoundlander in mid-shake


If this one isn't named Scamp, there's no justice in the world

 

And a beauty one its way to somewhere with great determination


And I met Ferdinand up close and personal

Photo by David
 
And then, as we left to go home, we echoed the words of a little girl we'd overheard earlier in the day: "I have just exited dog heaven."
    

Wednesday, June 15, 2011

Habitforming

    
They say it takes three weeks to create a new habit. If that's true, I'm screwed.

I may have mentioned once or twice (or entirely too much) that things got a little busy during Arthritis Awareness Month. It all started at some point in April or maybe it was March - the specifics are a blur, so forgive the vagueness - suffice it to say, the planning and preparation was intense. And then things ratcheted up during May and there were times (too many) where I found myself working well into the evening, sometimes even popping in for an hour or so around midnight.

As you can imagine, this does not make one's chronic illness happy. In fact, mine got downright cranky about it and when I wouldn’t listen - because seriously, I couldn't or the whole thing would fall apart – it gave me a stomach flu. When that didn't slow me down, it started throwing other things at me and I don't really remember what they were, because I ignored them. I did try to prioritize and think about what would happen if I didn't do it, but I was convinced that if I didn't stay on top of things, we would have a giant flop on our hands.

Someone once told me that believing yourself to be indispensable is the first sign of a nervous breakdown.

On the very last day of May, the impact of all the pain that had been obscured by adrenaline hit and I spent a week limping around. I applied the home ultrasound device in which I invested several months ago and it helped enough that I was able to kick it into high gear again. Because as of this Friday, I will be on vacation for two weeks and have you seen my list of things that have to be done before then? I don't know if it's the ultrasound or the adrenaline again, but the pain is tolerable and I'm busy and now I find myself working well into the evening again. The fact that I seem to be losing my voice might be a hint that this is not a terrific idea.

Despite The List, I do know that working this much is not necessary now. It was necessary during May, but not now. However, the eight weeks or so during which I moved really fast on the hamsterwheel taught me a new habit, namely working well into the evening. Way longer than I normally work and I can't stop. Really. I try and it doesn't work. Even started watching Season 4 of The Wire and that show normally grips me so tight that I can't do anything but watch it. But now what happens? I twitch. I pause the program and swing by my computer only to force myself to move back in front of the TV. And repeat throughout the evening. You know it's pretty bad when your mother, your partner and your boss opine that maybe you should show down a little. I did promise mor that I'd only work two hours a day during my vacation. Don't look at me like that - I'll be editing The Book.

They also say that admitting you have a problem is the first step toward solving it. So here it is: I am a workaholic on a bender and I need help to stop. Is there a Workaholics Anonymous program out there somewhere? How do I arrange for an intervention team? I need to learn sloth.
   

Monday, June 13, 2011

Sugar Beach Accessibility Tour

   
Remember my attempt to get to Sugar Beach? And remember how Bruce Sudds, the Communications Manager for Waterfront Toronto wrote me an e-mail committing to making some changes? And remember that Community Planning Meeting? At that meeting, my MPP Glen Murray - who is a thoroughly decent man with a passion for universal design - suggested we do a tour of Sugar Beach to check out how Waterfront Toronto have incorporated accessibility in this project.

Forward a while. It's now a couple of months later and the wee tour of Sugar Beach not only got scheduled last Friday, but also grew to include a number of people. Alas, Glen Murray was pulled away at the last minute, but Chris Drew from his office was there. Waterfront Toronto was represented by Bruce Sudds and James Roche, Director of Parks. Tom Davidson from Councillor McConnell's office was there, as were Joe, the City of Toronto staff responsible for things like curb cuts and Marcus and Steve, local residents with firsthand knowledge of disability issues.

We walked down the same path as mentioned in my original post about the issue and looked at curb cuts, tripping hazards and path of access to Sugar Beach. Waterfront Toronto and the City will cooperate on fixing curb cuts that need repair and creating curb cuts on the south side of Queens Quay. As in all construction projects that require mass coordination, the timeline is a bit loose, but there should be an accessible path to Sugar Beach within the next month or two. This will be a huge relief - I have made it down there (and it is beautiful), but until the curb cuts happen, you really need someone ambulatory who can wrangle traffic as you boot along the street.

The second part of the outing was looking at Sugar Beach itself. We did have a number of able-bodied individuals along who helped us wrangle traffic and once we got there, we toured the beach. One of my favorite places is the wooden platform built out into the sand about a month ago. It enables those of us who travel seated to participate in the beach itself and The Boy and I spent a lovely couple of hours there several weeks ago. On Friday, we all traipsed out on the platform


Tom Davidson and Bruce Sudds

 Marcus, Steve and James Roche

We had a chat about the Muskoka chairs which are lovely, Canadian and very atmospheric, but ultimately kind of hard to get in and out of if you have mobility issues or are getting up there in years. I suggested a couple of more disability/age friendly chairs and hope some will appear. My mother and I have plans to take the Tinks to the beach and I know she won't be able to sit in the Muskoka chairs while the kids play in the sand (when I’m advocacious, it's also for personal reasons).

We then moved along the waterfront towards Sherbourne Common, site of a skating rink in the winter and a rollerblading-with-water area in the summer. And this is where we encountered a brilliant example of the limitations of the Ontario Building Code (OBC). There's a small building there, home to washrooms and an eventual cafĂ©. The washrooms themselves were quite well thought out, except for the automatic door button. As in most other places, it's placed too high, which follows the OBC, but the problem is that the OBC is not only woefully inadequate, but also assumes that people in wheelchairs are able-bodied, but sitting down. This means that the people who use wheelchairs and who have limited movement in their upper body will have difficulty using or not be able to use such a button. Exiting the washrooms independently is impossible, because the buttons are placed in a corner where it can’t be reached unless you lean forward and have a full range of motion in your arms and shoulders. Which is rarely the case for people who have a disability.

This is not the fault of Waterfront Toronto. This is the fault of the OBC and I'm sure you can imagine the (polite and professional) rant that followed from the general vicinity of my person. It's something I was up against when I used to work implementing a local municipality's barrier-free policy in buildings, parks and policies and it's something we're still up against. The OBC is perpetually out of date, inadequate and lets down developers, corporations and stores like Metro who believe that following the accessibility requirements set out in the OBC will make their projects/building/store usable by people with disabilities. It doesn't and it doesn't serve either the developers/etc. or the consumers and customers. Retrofitting of building to fix accessibility problems after the fact is much more expensive than including usable accessibility features from the start and that means that even if developers/corporations/stores want to fix the problems, they may not be able to do it in an effective and timely fashion because of the cost. And that means continuing barriers to participation by those of us who have a disability.

Excuse the side rant. This is about Sugar Beach and Waterfront Toronto. Who at the end of the tour committed to finding a way to include consultation with people with disabilities in the Waterfront Toronto projects.

Thank you to all Chris and Tom who arranged it all, Joe for the curb cuts and Marcus and Steve for their expertise. And a special thanks to Bruce and James from Waterfront Toronto for their response, interest and commitment to making the waterfront accessible and usable to all. I'm officially impressed.
   

Sunday, June 12, 2011

Juggling Life with RA: TIme Management and Saying No

   
In which I muse about how living with a chronic illness is like having a full-time job:

"Appointment with family doctor regarding UTI caused by suppressed immune system, including travel and wait time: 1 hour 15 minutes
Appointment with rheumatologist for regular checkup, including travel and wait time: 2.5 hours
Physical therapy for shoulder injury, including travel time: 1.5 hours.
Mandatory Rest Period to manage fatigue and energy issues: 1-1.5 hours a day
Monitoring of general well-being, pain and energy levels: constant
Assessment and adjustment of activities and medication to make sure I function as well as possible: constant
Time to myself: priceless."

You you can read the rest of my latest MyRACentral post here.
 

Friday, June 10, 2011

An Evening Stroll

  

One evening last week after dinner, I got entranced by the outside, grabbed my camera and headed out. The park around St. James Cathedral seemed the best place to go and yes, it was. As the sun slanted towards the horizon, the light warmed, its honeyed fingers caressing concrete and flowers alike, lending everything a golden nimbus of light. It was magical.
 







  

Wednesday, June 08, 2011

Lucy Discovers Olives

   
Things were rather insane during May's Arthritis Awareness month activities at my workplace, but somehow my body cooperated remarkably well. In fact, early last week, I was remarking to my doctor. about how well I felt and how I was getting by on an astonishingly low amount of painkillers (it's amazing what adrenaline will do). Two days later, on May 31, the crash came. Apparently, my body saved up pain which it is now dishing out and I'm trying to take it easy. Hence, this is turning out to be a week of photos. Today is all about how Lucy discovered olives (and that area on her leg isn't from an IV - Miss Lucy chews off hair in certain places, either due to allergies or a bad habit. Not sure which).

On the most recent Boyfriend Weekend, The Boy and I wandered around the Market while we were hungry. This resulted in bringing home a number of interesting goodies, including kalamata olives. Which turned out to be the food equivalent of the Pied Piper. I missed the moment where Lucy was trying to open the container herself, but then the lid was removed by someone with opposable thumbs


and somehow, an olive appeared on the table


we watched as she chased it around for a while


Then Opposable Thumb Man took pity on the poor creature


and she was very happy


It wasn't just the brine that was enticing, a small piece of olive was gobbled up (small because I wouldn't allow her more)


and then, after all the excitement, she tucked herself in for a well-deserved nap

 
   

Friday, June 03, 2011

I'm Healthy/No I’m Not

   
My Writing Buddy has done it again. The woman keeps making me think and I intend to speak sternly to her about it one of these days.

Laurie's latest post In Translation is about coming back to the oncology centre for a monthly treatment and being asked how she feels in this question in particular poked at something I've been gnawing at for a while:

“Nurse:
"You're depressed. Why?"
Me: "I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.")”

When I get my Humira shot, I have to go to my doctor's office for it. The Biologics come in two forms: infusions that you get via IV in a clinic or self-injectable that you keep in your fridge and do yourself in your home. However, due to the RA-related damage and deformities in my hands, I don't have the dexterity to stab myself, so every 10 days or so, off I go to my doctor's office. I'm there a lot. I chat with the nurses and reception staff and my appointments with my doctor are very rarely about medical issues; instead, she tells me goofy jokes while doing the injection. It's all very relaxed and friendly.

Except. I've noticed that it messes with my head. I've noticed that in this context, I'm more likely to respond honestly when asked how I am. A have both RA and fibromyalgia and am on a load of medications with interesting side effects, so there's always something going on. The kind of somethings that I skip over in casual conversation, because they're just the background noise of my life, but when my doctor asks, I might bitch. Because this is a doctor’s office and when you go to a doctor’s office, there's usually something wrong with you, right?

I once told a friend that it was so nice being healthy again and in her surprise, the filter slipped and she blurted "but you're not!" I argued that my RA was suppressed, that my blood tests showed thisclose to normal, that I was eating like a horse and getting stronger every day, so yeah, healthy. She couldn't get there, hitting her head against my RA as some sort of impediment to attaining the status of Healthy, whereas I insisted that I prefer to look at my life in a completely different way. A non-sick way. For the first time in as long as I can remember.

Except. By definition, I am sick. I have a chronic illness, nevermind that it is currently dealt with by medication (watch me neatly sidestep saying the R-word). On the other hand, by definition – the R-word, objective blood tests, level of independence, ability to work (albeit far from full-time) and live my life - I am not sick. But I still traipse into my doctor's office several times a month and Laurie, despite being in the same sort of situation, still traipse into the oncology center once a month and we have both done this for years.

I've been known to argue about the term Patient. Usually connected to my job title and function which in the industry is called Patient Expert, but also in my own life. I resist using the terms RA sufferer or RA patient - for me, being a patient is related only to the moments where I am actively receiving medical care, not the rest of my life. Because my life is about my life, not about being sick and if I don't have that level of compartmentalization, the patient, the sick seeps in and covers everything in a thick goop that makes everything feel awful. For me, the focus has to be on my life and all the other things I am first and foremost and I work hard on it everyday..

But how do you manage that separation that when there's this many medical professionals this often in your life? How do you do stay within the headspace of healthy when the aftereffects of the treatment that keeps you going often makes you feel sick for a couple of days or a week? How do you maintain the image of yourself as healthy - or even Healthy - when you spend so much time in a context that is described and defined as Sick? Maybe we need another word. Maybe what we are is Not-Sick.

Except. Why don't we get the Healthy? Why should we need another word, another category? Why can't we expand the idea of healthy to include healthy-by-medication-despite-the crap-side-effects? There are more of us than anyone realizes and relying solely on the narrow niche defined by the normies does no one any favors.

A healthy life is not just for the ridiculous able-bodied. It's for all of us. 


I recently got an email from NursingDegree.net telling me I'd been included in their list of 40 Excellent Blogs for Arthritis Support. I am thrilled to bits. Thanks, ND!