December 31, 2012

New Year, New Challenges

Posted in Crashes, Journey, ME/CFS, Progress, Strategies tagged , , , , , , , , , , , , , , , , at 7:07 pm by Reva

New Year’s Eve looks even better than I planned.  I finished work two hours early.  Set myself up on my new banana lounge under the shade of my beautiful Japanese Maple, watching my dog explore the backyard, drinking my lemon lime and bitters and writing.  When the sun gets low I’ll move inside and set myself up on the couch in some comfy pyjamas with some snacks and a low alcohol sparkling wine and watch DVDs  until the fireworks on TV (and there are rumours of some local ones) or I fall asleep, whichever comes first.Maple

 

I’m not one for New Year resolutions.  I’m pretty sure I’d be setting myself up to fail.  But this year, or this past six months, has been the worst I remember health wise.  So I’m determined to make some changes.

Since my crash back in September I admit I probably haven’t been looking after myself as well as I could.  I’ve probably bought more take away food, I’ve nearly emptied my freezer supply, I haven’t eaten fruit, not paced myself well, have gotten lax with my planning which has meant more frequent trips to the supermarket…the list could go on forever.  Up until yesterday this is where I was going to focus my “health reform”.

The first thing I figured I needed to do was work out what was causing this prolonged poor health state, if it was just the above or was the above actually the result of a crash that has just been perpetuating itself.  I’ve been shutting this out because in the past I’ve found that for me a crash is triggered by no one thing, but usually a combination of things that have the audacity to hit me all at once.  The difference this time is I don’t seem to be recovering from the crash, at least not back to my previous capacity.

About six months ago my role at work changed significantly.  I wasn’t happy about the change, but that’s another story.  On the surface (and I suspect this may have potentially been behind the move) the move looks like it makes my life easier.  It’s less complex clinically, there is less urgency to get things done therefore there should be less overtime and on the side, parking was better so I wouldn’t have to park so far from work.  Unfortunately my workload was spread across two campuses, 10minutes walk apart.  I picked this as an issue early on and I tried to plan my week so that I wouldn’t be walking back and forth each day (driving sounds like the easier option but at one of sites it’s about a 10 minute walk to the nearest untimed free parking).

In the past few weeks I’ve been doing some research around chronic illness/disability in the workplace.  One of our OH&S representatives sent me some information which I finally had a chance to look into over the weekend.  As I was reading it I came to realise that the move at work may have been a bigger detriment  to my health than I first thought, that the things that I’ve been doing my best to not complain about for the past six months may be more than just annoying.

A lot of the management ideas portrayed in the information included things I already tried to do in the past, and were largely based around setting up your work space.  I now share a desk with two other people.  I can no longer stick reminders to myself in the middle of my desk because they’d be in other people’s way.  Using my diary is difficult.  It contains patient information so I don’t like to take it home but I’m frequently starting at one place and finishing at another so somehow it ends up at home. I then forget to take it back to work so I miss meetings, forget phone calls and overlook orders I’m supposed to place.  I’m starting to look very unprofessional.

My current role involves a lot more talking with patients, education and negotiation.  My brain does not do these well.  I have a very scientific brain.  It does not cope well with rephrasing and coming up with analogies.  I’ve noticed it being so much harder to speak my thoughts. My previous role was a lot more complex in many ways but I didn’t have to put my explanations into terms that patients could understand.  It also involves a lot more time on my feet, talking to patients (I refuse to sit on patients’ beds for a number of reasons) and chasing down other staff, and supplies.

For now I can’t change these things easily.  I’m not happy about it but that’s life.  I am going to put together a case, with the help of my OH&S friend and my psychologist, for some changes but given the complexity of politics in our organisation I’m going to tread carefully and take my time.

In the meantime I’ve considered what I can change to help my case.

  • I need to find a way to get to work on time.  I don’t cut hours, but if I arrive to work late I stay back late making it up which means I get home late, and start to feel like I have a routine of work, eat, sleep.
  • I have started to use the online calendar at work.  While this might appear an obvious solution, our organisation does not have enough computers (considering EVERYTHING is done online), so it’s not a final solution but I think it will help.
  • I’ve set a very strict timetable which I’m following starting today.  Into this timetable I’ve inserted all hours I’m allocated to each different part of my role, but more importantly I’ve included my tea breaks. Tea breaks are not something that is really routinely taken in my workplace however it is an entitlement and I believe it will go a long way to improving my productivity and health.  To help me with this I also have allocated a block of time at the beginning and end of each week to plan my week and ensure all the paperwork is finished on time.
  • I’m colour coding my diary.  I’ve always been jealous of people who do this but some of information I’ve been reading recommends doing this to help with visualisation.  I started doing it with my online diary about a month ago and it’s worked brilliantly so I’m going to start doing the same with my paper diary as I rely a lot more on that.

In addition I plan to:

  • Return to my fortnightly meal plans.  I don’t stick to them strictly but they do mean that I don’t have to go to the supermarket more than once a fortnight and I don’t end up buying my lunch at work
  • Drink less caffeine and artificial sweeteners.  I don’t have a lot of caffeine – I try to limit to no more than 2 caffeinated drinks a day and I rarely exceed this (and never after lunch).  Artificial sweeteners on the other hand have gotten a bit out of control.  In a bid to drink more fluid without sugar I have been drinking a fair amount of diet cordial.  The trick will be to drink enough fluid to keep my head from spinning. Today stocked my filing drawer with peppermint tea bags.
  • Later in the year, once I’m going to talk to my GP about reinstating some of my previous treatments (more on those another day) and potentially revisiting my CFS doctor.

 

So no resolutions but a long list of good intentions that I think are largely achievable and hopefully will go a long way to increasing my workplace situation.  I recognise a lot of other things I could do, but I think that by focusing on these will actually mean many others fall in place.

 

 

Wishing that 2013 brings you all happiness and good health xx

 

December 23, 2012

Posted in Uncategorized at 7:33 am by Reva

Linds has written a wonderfully comprehensive guide for making the holidays easier for your loved ones who have chronic illnesses

Musings of a Dysautonomiac

Can you believe the holidays are upon us already?? Where does the time go? The holidays are a wonderful time of family and togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a chronic illness, holidays have the potential to be miserable.

This is my second holiday season since my dysautonomia diagnosis, so I’m not a rookie, but this is only my sophomore attempt. Last year went fine, and I’d like to think, unrealistically perhaps, that I’m a little wiser since then. Well, at least I’m a little older. Although I’d like to specifically ask my chronically ill readers (regardless of your illness) to chime in with their holiday tips, this post is primarily intended for caregivers and friends/family of those with chronic illnesses. I’d like to address a few holiday stresses to hopefully make this…

View original post 1,274 more words

December 22, 2012

Road Trip

Posted in Journey, Progress, Strategies tagged , , , , , , , , , , , , , at 6:47 pm by Reva

I’ve just made the 300km trip to my hometown to spend Christmas with my family.  It’s a long trip when you have a chronic illness and are travelling alone (well, with a dog) but it’s a good opportunity to have a good think.

1km

Coffee break.  Okay, so I planned this to avoid making and cleaning up breakfast.  Poor Dog thought she was going to a play date, but just enough time to grab a quick coffee, a piece of toast and read the first two pages of the paper

coffee

17km

Where’s the cruise button gone? Same place that the volume control is on the steering wheel.  I don’t have it.  I’m not driving one of the work cars.

63km

As I’m going through a slightly windy part of the route I remember a conversation I had with my mum in the same spot 12 years.  I’d just bought my first car and we were driving home.  Dad was driving ahead and Mum decided she needed to tell him something.  She was going to phone him and I suggested that maybe as we were in a fairly remote area we probably wouldn’t have reception.  She couldn’t understand why that would be the case when we could see his car.  Sorry mum, they’re not walky talkies

120km

I’ve remembered 4 things that I’m sure I’ve forgotten.  Nothing urgent, just inconvenient.

124km

I’ve forgotten what it was that I remembered I’d forgotten.

136km

Time to stretch our legs in the largest town along our route, a thriving metropolis of 2300 people!  Coax the dog out of the car.  Wander around letting her sniff things.   Coax her back into the car with treats.  Check the boot to see if maybe I remembered to pack the lollies.  Nope, I really did forget them.

149km

One of my favourite road signs.  Sounds much more pleasant than a bumpy road.

 bumpy road

My other favourite is “Fatigue Kills”.  It hasn’t got me yet!!

167km

The scenery

photo

180km

swamp

I’ve been driving this road regularly for the past four years.  It was only during floods about 18months ago that I realised this was swampland.  Prior to that the droughts in the area had dried it out.

197km

Starting to fade.  I could do with those lollies.  I know they’d make me feel terrible later but a sugar high would help me get through the last 100km

209km

Christmas in rural Australia – I was hoping to see the old scarecrows that a farmer dresses up as a Christmas family watching TV would be out but I either missed them or they’ve been put away.

christmas letter box

213km

A duck? Out here? Just out of the corner of my eyes I’m sure that’s what I saw.  Can’t have.  Hold on, could have been a snake, a brown snake curled up with its head up.  Hmm.  Not going back to find out.

228km

Straight ahead and behind.  The farmers in this region have had it really tough.  After a decade of drought there were massive floods through the region about 18 months ago.  Now everything is so dry again.  Many farmers are unsuccessfully trying to sell up, and walking off the land.

aheadbackward

 

 

 

 

 

 

 

 

 

 

247km

I could really do with a bathroom break thanks to the coffee and the attempt to keep hydrated…but you saw the scenery

263km

There’s some fantastic Australian music on my playlist.  I just hit play on the alphabetical list and am finding myself singing along to some oldies but goodies (You Am I, Powderfinger ) as well as some newies (The Rubans, San cisco).

287km

Nearly home…the ground starts to turn red.

red dirt

298km

Made it

the end

December 13, 2012

Angst-ridden Adolescence

Posted in Journey tagged , , , , , , , , , , , , at 8:32 pm by Reva

If you don’t like listening to whiney tweens/teens, it might be a good to stop reading now because I suspect I may end up sounding like one before this ends.  I’m having one of those situations that as a grown up I know I should just get over but for some reason my mind reverts back to my insecure youth. But I’m quickly learning that if I get something that’s bothering me down on paper (or computer screen) the answer comes to me, or if it doesn’t I still stop thinking about it.

I have a friend who I had considered a close friend.  She lived in another town, as most of my close friends do.  We spoke most days by long SMS conversations.  We’d give each other support and advice about things going on in our lives.  About two years ago she relocated to the town where I live.  She stayed at my house for three months while the settlement for her house came through.  We talked about all the things we’d do now we lived only 2 blocks apart.  We could have meals together each week.  We could go for walks together after work.  We’d try to work out the best place to become our “local” for regular Friday night drinks.  We’d go to markets.  We’d watch our favourite TV shows together.

When her settlement came through I bought her house warming gifts, and baked gluten free treats for her guests.  And then everything stopped.  I invited her for dinner – she was busy.  Her mum was staying (I know her mum, we buy each other birthday and Christmas gifts).  He uncle was coming to do some work on her house.  She got a dog and had to take it to dog school.  I took a step back and decided to let her settle at her own pace.

I went out and decided to join a community group, something we’d talked about doing together that she suddenly was no longer interested in doing.  I got on with my life.  Occasionally if it was appropriate I’d ask her to come to local events with me, things that we’d talked about doing in the past but she was always busy, her mum was visiting, she didn’t like crowds or she was broke.  We’d still catch up, but only on her terms, and only at McCafe, with our two dogs tied up next to us.  It was her 30th birthday early this year.  She’d done some lovely things for my 30th and I wanted to return the favour.  I asked her out for High Tea.  She was busy, her mum was here and she had to take the dog to dog school, and she couldn’t afford it, could we go somewhere else, like McCafe?

A few months ago she had severe gastro.  I offered to get her some things from the shops.  I had my head bitten off, if that’s possible via SMS.  I knew she was unwell and let it go.  I grabbed some lemonade, dry biscuits and a magazine and left it by her front door.  When she thanked me I told her that I understood what it was like to be stuck at home sick, and that even if you don’t feel like talking to anyone it’s still nice to know someone is there for you.

A few months later when I had my crash she didn’t repay the favour.  She asked me to catch up the following Saturday for coffee – because she had to go to the shops anyway.  In the past I would have dropped anything, but generally being in a better place I said no, I was unwell and it would be too much for me.  She asked what was wrong and when I told her there was nothing.  No enquiry as to whether I needed anything brought to me, or done for me.  A few days later she asked something again and I apologised and reiterated my previous comments.  I didn’t go into great detail other than I was too unwell to go out.  If I hadn’t had my epiphany about friendships I probably would have been really cut up about it but by now the behaviour was so prolonged I would have been shocked if there’d been any recognition.

Last Christmas we caught up for take away pizza in a local park where the dogs sat tied to a fence.  This year I thought it would be nice to have something a little less stressful – juggling wrapping paper, Christmas gifts, pizza and dogs on a park bench – so asked if she wanted to do the same thing but in my back yard so the dogs could be free to run and we wouldn’t have to juggle.  The response? I’m busy, maybe but mum will be here soon so it’ll have to be before she gets here.  I’d rather go to McCafe.

So suddenly the brilliant place I was in a few months ago is gone and I feel like I’m back to the insecure self I have been in the past, and don’t know why I’m there – I’m plenty busy enough without worrying about this stuff.  I feel I’ve been demoted to the McCafe friend.  I don’t want to go to McCafe.  McCafe have hard plastic uncomfortable seats that make me ache all the following day.  I can’t bring myself to reply because I’m swinging between being a softy grown up (“Sure, McCafe sounds wonderful.  How’s Monday at 5.30?”), a sooky anxious adolescent (“have I done something to upset you? Don’t you want to be my friend anymore?” – to which I envision the reply “well if you don’t know, I’m not telling you”) and the slightly unpleasant (“nope, actually McCafe sucks, especially for a Christmas celebration.  If that’s all I’m good for let’s just skip it”).

let-take-down-notch-friendship-ecard-someecards

December 9, 2012

Daily Prompt: Childhood Revisited

Posted in The Daily Post tagged at 5:23 pm by Reva

Daily Post: Childhood Revisited: What is your earliest memory? Describe it in detail, and tell us why you think that experience was the one to stick with you.

Two of my earliest memories involve my younger brother when he was a baby.  There are just over two years age difference between us, and one of the memories involves a photograph so I often wondered if it was the photo the prompted the memory.

When I was two and a half and my brother was a few weeks old, my dad wanted to get a photo of the two of us dressed up on the couch.  I’m not sure what we were dressed up for but I have an extremely vivid memory of not wanting that photo taken.  I can picture myself pulling away from my dad, trying to get out the back door because I DIDN’T WANT MY PHOTO TAKEN!!!  The kitchen was dark but outside the sun was bright, and much more appealing than having a photo taken.  Mum was in a different part of the house, I think she was getting ready to go out.

I don’t see myself as being particularly stubborn generally but I guess that there’s a certain age when we all have to make our wants known.

Whenever I see the photo of me sitting on the end of my parents old couch, arms crossed and angry look on my face, with my baby brother propped up next to me I remember the scene.

The other memory I have was from a few weeks earlier.  I have a clear memory of walking into a hospital room to visit my mum when my brother was born.  The room was down the corridor from the nurses’ station on the right.  We walked into the room and mum was on the left.  I don’t remember much else, and I’ve never asked my mum if I’m remember a real memory or if it’s something I’ve fabricated or dreamed (on the other hand I’m pretty sure the memory I have of my auntie landing a plane in our backyard to take us to her house for a holiday is a dream).

December 6, 2012

Posted in Crashes, Journey tagged , , , , , , , , , , , , , , , at 8:28 pm by Reva

This time 2 years ago I was assessing an ICU patient who was waiting for a transfer to the wards.  He’d had a laryngectomy the day before, and despite no longer having a voice he was rather chatty.  As a result it was a long conversation as my lip reading skills are pretty poor and he had to write a lot down.  His nurse was teaching her student, just behind us.  All of a sudden my ears started to ring, and I felt hot and flushed.  I felt extremely nauseous.  I quickly excused myself and walked over to the nearest chair.  I put my head in my hands.  The chair was behind the nurse.

Running through my head was a thousand thoughts.  Was I going to be sick? I didn’t want to be sick.  But if I moved I’m sure I would be.  Where was the nearest bathroom?  About 10metres away.  It may as well have been 100m.  It was a staff bathroom with a keypad on it to keep visitors out.  I didn’t know the password.  Where was the next nearest bathroom?  Way down the corridor.  I didn’t feel I could talk.  I could feel the sweat literally running down my back, and my face.  My ears were still ringing, the smallest movement of my head made it worse.  I tried to take deep breaths.  I could hear the nurse saying to the patient “Did you have something else to tell Reva?” “Is there something you want to ask her?” I glanced up.  The poor patient was madly shaking his head and gesturing towards me.  The nurse turned around to look at me, just as another nurse came out from behind a curtain.  They both lunged for me at the same moment and each grabbed me, one under each arm.  Strangely there was a bed sitting out in the communal area.  They walked me over, lay me down and put up the foot of the bed.

Fainting

Immediately I felt better.  Apparently I was ghostly white.   One checked my blood pressure and another checked my blood glucose level.  Both were normal.  They called over the new doctor and said “Have you met Reva? She works here” – nice way to be introduced.  They were debating what to do with me.  They offered their comfy couches for a lie down for the rest of the day.  I was adament being the only person in my department on duty that I would be fine to go back to work.  They were feeding me fruit juice and water.  Then suddenly someone decided to would be best to send me to the emergency room, just for a full check.  Before I could blink I was being transferred through the halls of my workplace on a stretcher, down into the ER.  Fastest way to get into ER I tell you.

There I sat for the next 3 hours.  I was no longer acutely unwell but I felt weak and a little embarrassed.  I was given some sandwiches and fruit.  The process of eating was draining so I just picked.  Saline was run, I was hooked up to a cardiac monitor, bloods were drawn.  And I sat.  Eventually I was told there was nothing wrong, it was probably just a symptom of CFS and if it was cardiac we’ll just wait until it happens again.  Lovely.

A few months later the same symptoms overcame me.  This time I was with a patient who’d had an amputation (I’ve been working with patients who have had major surgery and wounds for years so I promise I wasn’t just woozy).  I sat down when I felt the symptoms and the patient asked if I’d like him to call a nurse for me.  I said it might be a good idea.  Next thing he swings himself up on to his crutches.  I told him it was okay just to press the call button, but he insisted that “buzzers are for sick people”.  He rounded up a nurse and same story.  Normal BGL, normal BP.

My GP is great.  She believes they’re harmless vaso vagel events and is happy to refer me to a cardiologist, but this has in total happened about 6 times in 2 years, so putting me on a cardiac monitor isn’t likely to pick anything up.  I suspect its (just) orthostatic intolerance.  One time I was seated when the symptoms came on – that one is a mystery, but all other times have been when I’ve been on my feet for a while, or very soon (<5mins) after I’ve stood up from lying position.  One of the most recent events was also in ICU.  The nurses grabbed me, and stuck me on the ECG machine but there were no abnormalities.  After this they threatened to stick the holter monitor on me every time I went in.

Just another frustrating symptom of ME/CFS I guess.  I haven’t had one of these episodes for over 6 months.  Here’s hoping I haven’t just jinxed myself.

December 2, 2012

The Art of Doing Nothing

Posted in Crashes, ME/CFS at 8:25 pm by Reva

I’m not a good patient.  This weekend I promised to do nothing.  Last week I worked full time again, and as two days I was attending a course I also did homework.  Friday at about 1pm I was thinking how well I’d managed such a full week, but about an hour later I hit the wall.  I managed to pass the end of course quiz.  It was the type of quiz that years ago I’d get brilliant marks on – multiple choice, had the answers right up till the last minute.  I did okay, and I don’t think the marks meant a lot because the course is a competency based class but I was still frustrated because about halfway through the test I lost concentration.  Not matter how much I tried to focus, I read the words but by the time I got the end of the question I’d forgotten the start of it.

So by the end of the day I told myself I was going to do nothing all weekend or I’d be a mess before next week starts.  But first I had to bake biscuits.  They were fine – chuck 4 ingredients in a bowl, spoon them on a tray and bake.  Easy.  I sat down afterwards, watched TV.  I even got to bed on time – I thought I was doing well.

Saturday morning I had to deliver the biscuits.  I thought that since I was out early I should drop in and get some Christmas shopping done before the shops got busy.  I got home at lunchtime.

After that I made myself sit down and eat lunch.  I watched some TV but then decided I had to put up the Christmas tree.  And start to make some stuffed toys that were to be Christmas gifts, after all I had to get one in the mail to be in the US by Christmas.  So I moved between hanging decorations, cutting out material and dragging out the sewing machine.  Then it was tea time.

While I was cooking my tea I realised I couldn’t live with the dirty dishes a minute longer, so instead of resting while my dinner cooked I washed dishes.  After tea I made myself ignore the strewn Christmas decorations and material that was all over my lounge room and sat myself up on the couch and put on a movie.  I can’t even to manage to watch a movie without doing nothing – I told myself I was multitasking texting a friend and catching on blog reading.  I soon realised I didn’t have a clue what was happening on the movie and gave up.  On the Brightside, I went to bed on time again.

That brings us to today.  After discovering my bread was growing green fur I decided I had to make pancakes (because cereal doesn’t cut it on a Sunday).  I did spend an hour or so reading the paper…between doing a few loads of washing.  Then I realised that I couldn’t live without a star on the top of the Christmas tree.  So I went to the local shops.  I really wanted to finish up the soft toys, at least enough so I could pack up the sewing machine.  So I did.  In between packing up the boxes that the Christmas decorations were in, hanging some more Christmas lights, and making the bed.  And letting the dog in and out.  And trying to find the ball the neighbours kids swear went over the fence.

So here it is, Sunday night and I’m thinking that I really do need that day off mid-week, and I really do need to learn how to do nothing.

I'll call it Sunturday