April 7, 2013

A Favourite Present

Posted in Strategies at 3:34 pm by Reva

I recently celebrated my birthday, and my parents bought me something I’ve wanted for quite a while, something that I hope will help me do things and use less energy while I’m doing it.

Something so simple. It’s the perfect height for my kitchen bench, so now I can sit while I was the dishes – cheaper than a dishwasher. I can sit while I’m chopping vegetables. Yesterday I diced 3kg of tomatoes and 1kg of onions to make tomato relish, all while sitting down. I can sit while I’m baking, waiting for the mixer to do its job. I can also sit while I do the ironing. I do what I can to avoid ironing all together, but sometimes when clothes have sit rolled up in the bottom of the washing basket for weeks I have to iron. Or I can sit when I’m piecing together my quilts, which I also do at the ironing board. I never thought I’d be so excited to get a wooden stool.

February 2, 2013

Fighting the Sleepless Nights

Posted in Crashes, Strategies tagged , , , , , , , , , , at 10:43 am by Reva

Sometimes when it feels like everything around you is falling apart, when you are playing things that are frustrating you or you feel like you aren’t doing properly around in your head instead of falling asleep.  When it feels like these things that you feel like there is no solution to these things but you’re determined to find one, or work out where you went wrong, I think it helps to take a step back and remind yourself of the good things you are doing or have achieved, and of the bigger picture in general.

As I’ve mentioned I’m going through a crash that for me is one of the worst I’ve had.  I am feeling like I am not doing my job properly as a result and that I don’t have the support of my direct manager.  I acknowledge that some of this is because I’m yet to find the courage to sit down with her and fully explain to her what my “fatigue thing” is (and that no matter what response I’ve had with regard to this in the past, it’s a conversation that has to be had).

Last night as all of the contradictory comments, the emails that contain underlying complaints certain people don’t feel that they are not getting what they expect from me and how they could do a better job, the conversations I’ve had and wished I’d handled better and the conversations that I want to have but am too scared to have were playing in my head when I should have been sleeping I turned on a light and started to write down the things I am doing well and have achieved.

  • I have acknowledged that I’m not getting better like I used to and have started to take steps to improve my health.
  • I have ordered a meal program where all my meals arrive pre-prepared to my door once a week.  This has helped my save energy that I would normally use on supermarket shopping, meal preparation and washing up.
  • I have started to reintroduce previous treatments – I am doing my best to drink my electrolyte solution every day.
  • I’ve spoken to our HR department about my options and now have avenues to pursue.  Plus I know I have people who can support me when it comes time to have the above conversation.
  • I’m doing reasonably well at keeping my new year’s good intentions.  I’m doing a reasonable job of leaving work on time, I’m sticking to my timetable but trying to be flexible if I can. I’m colour coding my day and my patient list so I can quickly identify the priorities.
  • I am accepting I need help and researching the best way to get it.
  • I am starting to stand up and state when I believe that something I see is affecting those around me (now to start doing it when it’s just affecting me!)
  • I am realising that if those around me are also stressed, anxious and exhausted, it is not me and my medical condition that is the problem.  It is the environment that I am in that is affecting my medical condition.  And while I think the above points are going to help bring my health back on track, I think this point is key to solving the problem.

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 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

November 11, 2012

Pacing (or My Attempts At Pacing)

Posted in Strategies tagged , , , , , , , , , at 8:03 pm by Reva

I hear (see?) the term Pacing bandied about across a lot of ME/CFS websites.  There are classes in it, studies on it and recommendations for it.  I thought I paced myself pretty well most of the time and when people asked what I could do to manage my condition I frequently answered “Pace myself”.  I’m not sure when I realised this had become a researched treatment.

Recently in a case meeting one of the Occupational Therapists was explaining that she had been working with a particular patient on Pacing so I took the opportunity afterwards to ask her what information she provides.  She knows about my condition and while she didn’t have any information on her she hypothesised that a simple Google search should bring up some reasonable information and that once I read it I’d probably find I was doing it.

She was right.  Pacing is an evidenced based strategy of energy conservation which is used by people with ME/CFS as well as people with chronic pain, and other energy sapping, pain causing conditions.   It is a way to break a cycle of overexertion and crashing by alternating resting with activity.  Yep, I did that.  I was pretty pleased with myself when I read about the concept, as this is what I’d worked out on my own 😛

Okay, so there’s a little more to it, and there are some steps that you should go through to properly pace.  This includes estimating how many minutes of the day you are able to do activity, prioritising activities, knowing your symptoms and eventually developing a routine and building up.  A percentage of time should be spent resting for every activity, and rest breaks should be regular.  The idea is not to cure but to help with trying to achieve some normality.

I’m no expert in pacing, and by no means am I successful in it all of the time.  In fact there are times where I consciously fight against it.  There are days where I know I should take a lift but wonder what others will think and force myself to take the stairs.  Yesterday I helped out catering with a women’s group I attend regularly, which involved being on my feet for 2 hours straight.  Because these ladies don’t know about my condition, and were all much older than me, I pushed against my head which said I should stop and sit because I didn’t want to draw attention to myself.  Ironically I probably would have drawn a lot more attention if I’d passed out from standing for that long, but fortunately I’d make sure I was well hydrated, had extra salt, and spent the whole 2 hours wiggling my toes and stretching and managed to stay upright (albeit with some pain).  Oh, and once I did take a momentary seat under the cover of keeping an older lady company.

When I do listen to my instincts though, pacing does work for me.  While I’ve never sat down and calculated how much rest I need for how much activity, using my lists (have I mentioned I love lists? :P) in combination with sitcoms on DVD I get by.  On a good weekend I break up jobs with TV shows I’ve recorded through the week, or episodes of Scrubs.  On a bad weekend I watch 2 episodes between jobs.  No denying it though, it’s something I need to keep working on.

October 26, 2012

Ten Little Things That Get Me Through the Day

Posted in Strategies tagged , , , , , , , , , , , , , , at 8:17 pm by Reva

  1. Grocery Delivery – I love grocery shopping (is that weird?) but it can be extremely draining and on a bad day it can have me in a withering heap with all the noise, bright lights and people.  I now get all my fresh food delivered.  I have a set order for vegetables milk and bread with a company that sources all Australian made/grown products.  I pick and change all my other fresh food based on my plans for the fortnight.  This means I only have to go to the supermarket for a few extras – rice, toiletries, frozen veg and a few herbs and spices – so I can do the job quickly if I time it right.
  2. Planning and Freezing Meals – this helps me for a few reasons.  By planning, I don’t have to go back to the supermarket outside my fortnightly trip.  I also don’t actually have to think about what I’m cooking.  If I come home exhausted I go onto automatic pilot, check the fridge door and cook before I sit down (if I sit down there’s no going back).  Also by freezing my leftovers I can not cook at all and still not end up eating take out (I actually find reheating from the freezer easier than take out) which means I can usually stick to a healthy, mostly unprocessed diet.
  3. Routine – back to auto pilot.  I find routine hugely helpful.  I often forget how helpful until I stray from the routine and fall in a heap.  If I stick to routine it takes less concentration.  I have a bedtime.  I very a little with whether I should stick to the same “get up” time on the weekends or not.  Sometimes I feel
  4. Employing help – it took me a long time to get used to the idea as it felt like an extravagance for a single person working part time, but the little bit of money I spend to have someone do my “heavy” cleaning (scrub the shower, vacuum and mop the floors) is seriously the best thing I did for my condition.  Previously I’d have to spend the next 2 days on the couch after doing these (which did NOT do wonders for my social life and therefore depression associated with ME/CFS) but now I no longer waste the 2 days post big clean and my house stays clean (clean, not tidy).
  5. Sitting down to brush my teeth and dry my hair – I did this by accident and didn’t realise right away I was doing it, but I sit on the side of the bath when I’m blow drying my hair and brushing my teeth.  This helps manage my orthostatic hypotension.  This brings me to…
  6. Electric toothbrush – my gums ended up in a mess and I realised that I was so exhausted and weak at the end of the day I wasn’t doing my teeth properly.  On advice of my dentist I invested in an electric toothbrush.  The one I have flashes a red light if I brush too hard and buzzes every 30 seconds with the idea that you spend 30 seconds on each quadrant of the mouth.  So now I’m brushing my teeth properly with no concentration or effort required.
  7. TV episodes on DVD – sounds stupid but I discovered that these are great to help with pacing.  They’re shorter than watching a movie which means I can break up jobs by watching one or two episodes.
  8. Saying No – this is really really tough.  I hate saying no.  I think it’s part of my nature to want to do things to help people.  But over time I’ve learnt that saying Yes all the time helps everyone but me.
  9. Maisie – okay, Maisie might not help my ME/CFS directly but she does help with the social isolation and hence depression associated with it.  I was being treated for depression at the time I got her and while I know that she’s not the only reason I’ve been managing my depression I know she’s a big part of it.
  10. Letting go of perfection – I’ve always been a perfectionist.  When I was little I used to run inside and change my clothes 3 or 4 times a day when I was playing in the sandpit.  I grew up in a household where everything had to be clean and tidy ALL the time.  You’d never know it looking at my desk or my house but I HATE being messy.  But if leaving things in a mess on my desk means I can drive myself home safely, or leaving the dishes on the sink means I can get through the rest of the week at work, well, I had to get over it.

October 18, 2012

Oh to be List-less

Posted in Strategies tagged , , , at 5:51 pm by Reva

Pardon the pun.

As my ME/CFS progresses my memory is slowly getting worse.  One of the things I’ve learned I need to do to keep myself on track it to write lists.  I have to write everything on these lists and I keep them everywhere.  Here’s one example:

Yep I have to remind myself to trim my nails and have a shower some days.

I always have a few lists on the go.

At home I have a “big jobs” list that sits on my fridge.  It’s the stuff that I know needs to be done, but is usually too big to do on my own or to do all at once, and doesn’t need to be done right away.  I keep it so that when people offer to help me by doing something around the house I know what to suggest, or when I have an unexpected run of good days or quiet weekends I can break the jobs down and do them myself.

On the first day of my weekend I write a list of all the things I want or need to achieve for the weekend.  I started to do this when I realised I was running around like a mad thing on a Sunday night trying to do all the things I forgot to do on a weekend, burning myself out before the work week even starts. Over breakfast I keep this list by me and plan my day or weekend.

I have a “Spring Cleaning” list.  It might take a full year to work through it but it prompts me to clean those things that I only ever notice when I’m too tired to do anything about it.

At work I have an ongoing “to-do” book (Yep, a whole book).  It has all the big projects I want to do, the phone calls I need to follow up, the forms I need to submit, the policies I’m supposed to write.

From this list I write a daily to-do list – If I don’t write this one I’m likely to forget all sorts of appointments.  And I usually break down the bigger projects into smaller jobs on this list.

As well as keeping me from forgetting things these lists help me to prioritise how to use my energy on a particular day.  For example from the list above, I would decide what absolutely HAS to be done (eg. Shower, dishes, voting).  I know I can’t do the dishes straight after (or before) having a shower.  Both involve standing in one place for a reasonably long period of time so if I did these for too long I’d probably end up with a drop in blood pressure, start to feel weak and dizzy, possibly nauseous and on a really bad week I’d possibly pass out.  So I make sure I have enough time between each to stop for a break, usually sit down and read the paper or watch some TV in between (I was told by a doctor once that the only activity that doesn’t count as “activity” when measuring how much a person with ME/CFS can do is watching TV – reading counts as activity as it takes more brain power than watching TV to do).  Or I might use this time in between to do some of the less draining activities (eg phone calls to make appointments, paying bills online)

My latest list is my “want” list.  Like most people I always find throughout the year I think of things I want but the needs come first.  But when Christmas or my birthday comes around and people ask what I want, I forget.  Usually until the day after the event.  So I’ve gone back to my preschool years and started a Santa list.

October 17, 2012

Meet Miss Maisie

Posted in Strategies tagged , , , at 7:51 pm by Reva

Maisie’s my guard dog.  No really, she is!

Maisie loves toast, licking things (everything – faces, the floor, the air, I’ve even caught her licking walls on at least two occasions), her friends Barney, Polly and Nelly, hiding rawhide in her special places (frequently under my pillow) , the next door neighbour (who visits her when I’m at work) and the cleaner.

She likes doing neighbourhood watch from the end of my bed, and comes to find me to tell me if there is something out of place.  She likes to bark so that everyone knows how big and tough she is.  This includes the large dogs we pass on our walks.

She doesn’t like other dogs walking anywhere she can see from the front window.  Or cats she can see from the front window.  Or people she can see from the front window.  Or birds…anywhere.

Maisie knows how to sit (when she wants to), wait (if she chooses to), find her duck (or whatever toy is closest to her that she thinks might pass as her duck and get her a treat) and to check if someone’s at the door.

The truth is on the really bad days, without Maisie I’d go a little crazy.  I really think that since Maisie came to live with me I’ve managed my ME/CFS better.  Having another living thing with me means that I can talk to a living creature other than myself.