March 22, 2013

More Sleepless Nights

Posted in Crashes, ME/CFS, Progress tagged , , , , , , , , , , , , , , at 5:29 pm by Reva

For months I’ve been trying to work out what might be increasing my symptoms these last 9 months. One and a half years ago I started taking low dose amitriptyline to help me sleep. Before taking it I had no trouble falling asleep but I’d wake on and off throughout the night, sometimes lying awake for hours. Once I started taking it I still would wake once through the night but I would fall straight back to sleep.

Recently I wondered if maybe it might be behind some of my fatigue. Maybe it was causing me to be foggy through the day. A few different people have suggested that at the dose I was taking it really shouldn’t be causing problems. Amitriptyline has other uses and when used as an antidepressant it is given at much higher doses. At the low dose I was taking there shouldn’t be any issues. I was still curious. I don’t think I have any issues with tolerating medications and chemicals that other people with ME/CFS have but maybe the reaction for me is subtle.
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I had a chat with my GP, and I also asked about high dose melatonin. She was more than happy to prescribe it, however given that melatonin works by resetting the body clock and I’d been sleeping well for 18 months I shouldn’t need it. My body clock should be reset.
That night, and the following six, I cut the amitriptyline tablets in half to reduce my dose. I was sure I was on a winner. No change to my sleeping pattern. I was falling right to sleep at night, then waking once through the night and then waking up with my alarm. The waking was as difficult as ever, but it was no different.

The next week I cut out the tablets. For another week things continued on the same. Wake once, then straight back to sleep until my alarm went off. I even slept well through the heat when everyone around me was complaining of sleepless nights.  But last Saturday morning I woke at 1am. Then again at 4am. And then I didn’t go back to sleep for an hour and a half. The result – complete overwhelming fatigue and pain. The kind that makes you feel nauseous, that sits there in the forefront of your mind stopping you from being able to distract yourself with anything else. The next night I was back to my usual “wake once and go back to sleep” routine so I decided one night of poor sleep isn’t enough to change go back.
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Then Tuesday morning I had a repeat of Saturday morning. Not so easy to cope with the overwhelming fatigue at work. It reminded me why I’d gone on the amitriptyline in the first place. This used to happen so frequently that I was struggling with work; but one day I should be able to get through.
It was the second replay on Thursday morning that changed my mind. Three sleepless nights out of six compared to I think one in 18 months is pretty clear that the amitriptyline was doing some good. Even if there is a little fogginess (which I don’t feel reduced at all, but I don’t know how long it would take for it to completely get out of my system), the fogginess is actually easier to work with than the severe fatigue, nausea and radiating pain I feel after the days is a thousand times harder to live with.
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So last night I put myself back onto the amitriptyline. I had a good night’s sleep and I think given a few more I should be back to my normal, or at least my most recent normal, and I’ve crossed one more theory off my list.

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March 11, 2013

A Week in Review

Posted in Crashes tagged , , , , , , , , , , , at 12:44 pm by Reva

I’ve had a busy week, which has been both good and bad, and with the current heat wave and humidity my brain is just not working.

  • I think I have a new symptom.  Nausea.  I’ve had it off and on for a week now.  A friend who works in chronic pain management tells me that nausea is often decreased if you can manage to distract yourself with thing you enjoy.  Makes sense – the worst of it has been during long meetings.   Nausea
  •  I had to work for a day on the other side of the city in preparation for some students we have starting with us in a few weeks.  It’s a 1½ hour drive one way if you get a good run on the freeway.  Instead of putting myself through 3+ hours of driving I took the opportunity to have a catch up with a good friend who I’ve been trying to catch up with since Christmas.

 Traffic slows to a crawl on the Monash Freeway...

  • I had the opportunity to spend some time with some academics in my profession.  I’d really love to do some further study, it’s something I’ve looked into off and on over the past 5 or 6 years; but I don’t think my brain would let me, especially at the moment.

how to title your thesis

  • I finally took the step of calling the office of my specialist.  I was expecting to be told that either they weren’t taking new patients (and given that it’s been at least 4½ years I expect to be a new patient) or if they were there would be a 6 month wait for an appointment.  It turns out that I was right that he isn’t taking new patients, but I’m still in their system so they booked me right in…in a month’s time!!

 

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.

January 10, 2013

To Know It Is To Loathe It

Posted in Crashes, ME/CFS, The Bad Days tagged , , , , at 7:17 pm by Reva

Today I hate ME/CFS.  Not that I usually love it, or even like it, but usually I tolerate it.  It’s there, there’s not a lot I can do about it.  But today I am having a day where I really hate it.

I hate the feeling of waking up tireder that when I went to bed.  The feeling that my eyes are stinging, that I would have been better off staying awake all night because for some reason the idea of having stayed up all night seems less tiring than how I feel this morning.  And the reason I know it’s worse than a normal night is that I slept right through the night.  Usually I wake up at least once.

I hate that the dreams I have during a crash are insanely weird.  I never remember the full story, just snippets.  From last night I remember being in a cooking competition, making “a trio of nachos”. There were appetizer ones that had individual corn chips lay neatly on a tray, each with a dab of tomato salsa and a sprinkle of cheese, grilled until just brown, then drizzled with an avocado sauce in a neat bottle.  There was also a heap of people who I haven’t seen in years, who I was sharing a house with – I think I was back at uni.  There was hiding from someone, in what looked like a storage room with glass windows and open metal shelves – like the ones you see on medical shows on TV.  Then I was at work, in some place I don’t recognise.  And the weirdest, hiding parts of a dead body.  I have no idea what that’s.

I hate that on these days I become so emotional.  The smallest thing sets of the tears.  I had one of most emotional work trips today driving through a small town where a murder occurred since I last drove through, past a road sign to another small town where out of control grass fires tore through homes earlier this week, past the fire fighters out washing down there truck after fighting those fires.  On a regular day these would have touched me but today I welled up.

I hate the way my brain seems to go on strike, the way it stops mid-sentence.   It reaches a point where it not only happens when I’m talking but even in my thoughts.  And if it doesn’t stop it goes off on tangents so often that I suddenly stop with no idea what I was supposed to be saying.  Trying to get back to the point is like treading water in my head…if I keep talking maybe I’ll remember the point and find my way back to it.

I hate that there is so much I need to do and knowing that it’s not going to happen.  Or if it does happen, I’m going to be in even worse shape.  I need to wash my car properly – it has moss growing in crevices because I keep giving in and taking it to a drive through car wash so it’s never properly clean, or dried.  I need to change the sheets on my bed, but making it will probably take me all day.  I need to make a heap of phone calls.  I need to restock my freezer. 

I hate that despite knowing that I need to do all of this I spend all spare time outside of work sitting on the couch, watching bad summer TV.  And that when I get back to work people ask what I did on my day off/weekend, because when I try to come up with something the best I can manage is “watch tv” or “not much” and they respond “oh that sounds so nice, I wish I could do that”. I don’t have the energy to do even the seemingly restful activities like sewing or writing or reading.  Sometimes even watching TV is too much. 

Most of all I hate how negative I become.  I’m sure I’m not like this on the good days.

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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 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

November 23, 2012

A Roadblock

Posted in Crashes, Journey, ME/CFS tagged , , , , , , , , , , , , , , at 2:07 pm by Reva

Lately I’m finding work is stressing me out.  A few weeks ago I was finding myself in tears at the thought of going to work and I decided it was time I reinstigated my sessions with a psychologist. 

I have a history of depression and while it’s been well under control for the past year or two I know I get “all up in my head” and start reading more into situations than are necessarily there.  With these tearful sessions I thought it was time to nip it in the bud before I was back in a place of full blown depression.  Unfortunately the psychologist I worked with previously is no longer practicing in my area so it’s been a process to find a new one and get back into the system.

Between making the decision to return and now I’ve come to realise that the work stress is not in my head, that everyone around me is feeling it too.  When I completed forms with my GP today my depression and anxiety scores were in the normal range but my stress score was through the roof.  I wasn’t surprised but I was also quietly relieved to have identified a trigger to my depression and got on top of it before it truly started having further impact on my life.  It’s also sort of a relief to have identified what is the most likely trigger to my lastest series of crashes, although the tough part of working through it and learning to cope all over again is probably just about to start.