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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November 25, 2012

Liebster Award

Posted in Award tagged , , , , , , , , , , , at 10:02 pm by Reva

Thank you E. Milo for nominating me for a Liebster Award. I still get excited knowing that people are reading what I write.  I know I’ve said it before but I started this blog as a way of getting my thoughts, feelings and frustrations about living with ME/CFS down, I guess as a form of therapy.  While I didn’t expect to have readers, I’m so grateful that I do as I’ve met some wonderfully supportive people who can relate to what I right from all over the world.  E.Milo has kindly said that as I have done this process just recently I can conserve energy by not doing the whole process again but I think it’s only fair that I answer her questions.

This award is given to bloggers with less than 200 followers (give or take) that a blogger feels should get some recognition. There are four steps a nominee takes to receive this award:

  1. List 11 things about yourself.
  2. Answer your nominator’s 11 questions.
  3. Choose up to 11 bloggers with less than 200 followers and ask them your own questions.
  4. Inform your nominees of their award nominations

My responses to points 1, 3 and 4 are here.

And my responses to E.Milo’s questions are below

  1. Finish this sentence: “One day I will…”

Learn how to do nothing and not be worrying about what I should be doing

  1. What sound or noise do you hate?

My pager beeping.  It guarantees the way I planned to ration my energy for the day is about to have to be re-planned.

  1. What is your favourite animal?

I know I’m still boring but dogs.  I just spent a weekend with two of them and they’re hilarious, like two toddlers!

  1. What is your perfect  birthday meal?

A shared platter of cheeses and antipasto with a glass of Marlborough Sauvignon Blanc followed by lemon tart for dessert.

  1. What part of your body do you like the most?

My conjoined toes.  Just because they’re a good talking point.

  1. If you could be anywhere in the world right now, where would you be?

Travelling around Europe with no need to rush home so that I can do it at my own pace.

  1. What three people, dead or alive, would you like to have at a dinner party?

My grandmother, who passed away before I was born, Bill Granger to cook and

  1. Where do you want to be or how do you see your life 20 years from now?

I hope that I am settled with someone I love, either with a couple of kids, or travelling the world.

  1. What is your biggest vice?

Chocolate.  Until about 6 months ago I had willpower, then overnight it disappeared.

  1. Name one book and/or movie that made a difference in your life.

I don’t know if it changed my life but Bobby is right up there.  I loved how I came away from it feeling like I learned so much given that my knowledge of history is so poor, and how Emilio Estevez managed to weave so many stories amongst such a significant true story.

  1. Finish this sentence: “I am thankful for…”

My family.  Thanks to them I am sitting here tonight with clean windows, leftovers, my ironing done, a lovely tidy yard, a fully functioning computer and resting after some wonderful company.

November 14, 2012

Feeling the Love

Posted in Award tagged , , , , , , , , , at 2:43 pm by Reva

Imagine my surprise when I awoke this morning to find merbear from knocked over by a feather had nominated me for a Liebster award!  Thank you merbear!

This award is given to bloggers with less than 200 followers (give or take) that a blogger feels should get some recognition. There are four steps a nominee takes to receive this award:

  1. List 11 things about yourself.
  2. Answer your nominator’s 11 questions.
  3. Choose up to 11 bloggers with less than 200 followers and ask them your own questions.
  4. Inform your nominees of their award nominations

So here it goes:

11 Things About Me:

  1. I’m an amateur quilter.  One day I’ll share some of my projects
  2. I used to play the flute in the school band.  I took up saxophone too because I wanted to fit in with the cool kids, but I was never any good.
  3. I have a gorgeous Goddaughter who is 3, and is apparently coming to live with me when she becomes a rebellious teenager
  4. I love junk mail.  I sit and read it cover to cover
  5. I’m addicted to new stationary.  I can’t walk into Kikki K or Officeworks and walk out with just the things I went in for.  In fact I’ve had to ban myself from the Kikki K website.
  6. I love the smell of freshly mown grass even though it gives me hayfever
  7. I hate cantaloupe/rockmelon
  8. I hate mess.  You wouldn’t know it looking at my house.  Or my desk at work.
  9. I am 31 and still listen to a “youth radio network”, mostly because I find the music so much easier to listen to than the mainstream pop on all the other radio stations.  And they have no ads
  10. I’ve been overseas three times.  I’m hoping to make it to four in the next twelve months.
  11.  I want to do more study.  But I don’t know what I want to do.

My responses to merbear’s questions:

1.    Fact or fiction?

Fiction. Somehow I don’t need to concentrate as hard. Fact seems like work.

2.What is your favorite animal and why?

I’m probably going to be boring and say dogs.  They have such funny personalities, and just want to be loved.

3. Do you think being rich would make you happy?

No. I really don’t.  It might make some aspects easier and less stressful, it wouldn’t equate to happiness.

4. Are you bright eyed and bushy tailed in the morning, or grumpasauras rex?

Grumpasauras rex.

5.What is your favorite dessert?

Lemon tart. With double thick cream.

6. What is your favorite thing about blogging?

The people that I’m meeting that their amazing ability to share their stories in such articulate ways

7. Do you like reality TV shows?

I detest them.  I miss 90’s TV

8. If you could have lunch with one famous person, dead or alive, who would it be?

Hmm.  This is a tough one.  I actually stewed on this for ages.  Do I pick someone who I’d like to just sit and watch over lunch? Or someone who I think I would be able to have a long talk to, who I could learn something from?  Is there such a person that covers both? I still haven’t come up with an answer but I’ll come back and edit when I do.

9. What is your favorite breakfast cereal?

A really crunchy toasted muesli – the kind that on the surface looks healthy but is really ladel with honey and oil and lots and lots of toasted nuts.  Or Cocopops.

10.  Do you believe that love is all we need?

No I don’t believe it’s ALL we need but I do think that life would be a bit empty without it

11. Chocolate or vanilla? Possibly strawberry?

Chocolate all the way.

My Nominees: – Okay, I can’t work out if all of these have less than 200 followers.  But if some do I’m sure they’d still appreciate some more love xx

  1. Alexisstone55
  2. Momentary Solutions
  3. My Journey with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  4. Decimawho
  5. Lethargicsmiles
  6. Emotional Umbrella
  7. Musings of a Dysautonomic
  8. True life is stranger than fiction
  9. CFS Introspections
  10. Mi[cake]la

My questions:

  1. What are you proudest of?
  2. What is your favourite colour?
  3. What inspires you to blog?
  4. What three things would you grab if your house was burning down?
  5. Can you resist chocolate?
  6. Where did you spend your favourite holiday?
  7. Finish this sentence: One day I will…
  8. If you could be anyone for a day, who would you be?
  9. Tea or coffee?
  10. What is one of your oldest memories?
  11.  What is your favourite movie?

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.