November 29, 2012

Tug o’ War

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , at 9:27 pm by Reva

Tonight I was skimming through the latest internationally accepted criteria for diagnosis of ME.  I haven’t read it in detail but a funny thing struck me.

I was reading through the checklist of symptoms for diagnosis, and I thought, “Yep I still have it”, then I didn’t know whether that was a good thing or not.  I mean, it sounds ridiculous to be happy to have a chronic debilitating condition that has no known cure.  But what if I don’t have it? Then what’s wrong with me?

Pictograms of Olympic sports - Tug of war. Thi...

I remember feeling the same confusion when I first was diagnosed.  After years of being unwell, tests and not knowing what to call what I had, I finally had a name for what I was experiencing. Yay. But it will never go away.  Not so yay.

I’ve been in a lull with my treatment for the last few years.  I’ve just been riding the storm I guess.  Every now and then I read about a new test or theory and I think, “maybe I should try it” followed quickly by “but will it achieve anything”.  Things I’ve tried in the past have been costly but I haven’t noticed any change but taking them.  I’ve probably become a bit lax in some of my management stategies.

After seeing a psychologist a few years ago I decided that I couldn’t let ME/CFS wasn’t going away, so I couldn’t let it control my life. I took back that control but maybe a little too much so.  I have too much caffeine and alcohol, not enough fluid.  I don’t pace myself as well as  I used to.  This past few weeks have been pretty chaotic, and I’ve consciously tried to change some of these things.  But I’ve also been thinking, maybe it’s time to take a stand and start looking after myself a little better.

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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 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.

November 18, 2012

How Does It Feel?

Posted in ME/CFS tagged , , , , , , , , , , , at 5:02 pm by Reva

Usually when people ask me what it’s like to have ME/CFS I direct them here to “The Spoon Theory” written by Christine Miserandino.  I found this in the early days of my diagnosis and think it explains the decision making process we go through each day so well.  But occasionally people want more, they want to know how it physically feels.  I’ve heard people compare it to having a really bad flu that just doesn’t go away, in combination with a hangover, running a marathon and so on.  But I find it hard to do this.  I’ve never had the flu (touch wood), I never had particularly bad hangovers or at least when I have had a hangover I’m pretty sure it was actually lack of sleep that I was symptomatic of, not excess alcohol.  And I’ve never run a marathon (and let’s face it, it probably will never happen).

I have trouble verbalizing what I want to say.  My brain and mouth don’t seem to connect most of the time.  So I thought I’d write it down to try to convey it.

I feel like my limbs are filled with sand, like they are so heavy I can’t lift them.  Every step I take is like dragging a sack of sand behind me, and my arms hang loosely by my side because they’re too heavy to lift.  If I’m carrying something, it takes every ounce of willpower to keep my fingers gripped so that I don’t drop it.  My head is heavy too, so heavy my neck can’t hold it up on its own and it needs the help of an arm which in turn needs to rest on a table.  The room around me sways.  Many a time I have stopped and steadied myself and wondered if there has been a small earthquake, then looked around and realized no one else felt anything.

The idea of eating is exhausting even though I’m hungry.  It’s easier to stick to soft foods that I don’t need to chew, and preferably can eat using one arm (while the other is still holding up my head).  Unfortunately this can lead to some bad choices.  Nuggets and chips, chocolate; my body craves fatty or salty foods or combinations of both.

There is pain all over.  Kind of like the pain you have after a good work out, but it’s everywhere, and it moves.  I can’t get comfortable because when I move one part of my body to make it more comfortable another part then starts to ache.  The best way I can explain it is it feels like muscle pain, but it’s more focused around my joints.  It’s bad when I’m standing.  Sometimes it’s worse when I’m lying down.

My head feels like it’s filled with cotton wool. There’s constant tinnitus.  It drowns out all the other noises and makes it hard to concentrate.  Speaking of concentration, I can’t.  My mind can’t stay focused on anything.  I can’t read because I find while I’m concentrating on the print, I can’t take in what the words are saying.  Of course, that’s if the book isn’t too heavy for my already heavy arms.

I can’t carry on a conversation because between listening to another person, computing the story and coming up with a response, my brain has somehow disconnected from my mouth.  It’s worse if I’m in a group.  When my mouth finally opens the story has moved on and whatever I’ve said is no longer relevant.  So I sit back and listen – at least I know what’s going on then.

Bright lights make my eyes flicker and squint.  And I’m cold, so cold. Right down to my bones cold; and I can’t get warm even though I can feel it isn’t ACTUALLY cold. That is until the middle of the night when I wake up sweating.  I can feel the air is cold but I’m SOOOO hot!!

I’m constantly trying to catch my breath, and feel like I’ve been walking up stairs.  I try hard to disguise it, especially around people who don’t know. I don’t want them to think I’m just unfit.

My throat hurts, like the start of a cold or flu that just seems ready to tip me over the edge but doesn’t quite get there.  I start to sniffle and sneeze but I know it isn’t a cold.  It’s just my hayfever that seems to flare up when I’m already tired on the verge of a crash, not when the flowers are out and the wind is blowing like with other people.

All of my symptoms change from day to day, and one person’s symptoms will never be the same as the next persons.  Each ME/CFSer is a unique combination of symptoms, aches and pains.  It’s probably why diagnosis is still such a long drawn out process.  It’s also what makes it so hard for us to explain.

November 16, 2012

What’s in a name?

Posted in ME/CFS tagged , , , , , , , at 6:14 pm by Reva

 

There are a lot of people campaigning to stop using the term Chronic Fatigue Syndrome (CFS) or ME/CFS and start using Myalgic Encephalomyelitis (ME).  I haven’t ever been one to worry about it.  If I used ME I figure I’d have to explain it.  And how do you say “myalgic encephalomyelitis” when you struggle with basic word finding.  Nope, people have heard of Chronic Fatigue Syndrome, and are less likely to ask questions.  Besides, the complexities of ME sound BAD and I don’t want people to feel sorry for me.

I understood why people wanted to change the terms.  Chronic Fatigue Syndrome suggests there is one symptom.  It simplifies the condition. I’ve probably been lucky not to have been around people who thought of CFS as a real condition, who didn’t write it off as “yuppie flu” or any other of the deprecating terms.

Recently though I’ve started to question my apathy.  Recently it was brought to my attention that my “fatigue” was affecting the people I work with.  Recently I’ve been holding my head in my hands which is causing some colleagues to be reluctant to ask for my help.

Initially I was mortified.  I’m not one to hide my ME/CFS – I think that it would take more energy that I don’t have, to do that.  I do however try to remain professional at work, carry out my duties and do my fair share without complaining about whatever symptoms I might be experiencing on a particular day.  I’m not saying I’m always successful, but to think I had failed to the point it had to be brought to my attention was embarrassing.

Once I got over my initial humiliation and made a conscious effort to hide my symptoms I started thinking that maybe using Blue question markdifferent terminology might have helped me out in this situation.  Maybe had I not been so indifferent about the terminology and taken the time to say I have “myalgic encephalomyelitis” instead of “chronic fatigue syndrome” and explained the complexity of the symptoms, the resting my head in my hands might have been seen as the dizziness/low blood pressure/shaking that it was rather than “just fatigue”.  It’s made me wonder how many of the people who are supportive of my condition actually don’t have as good an understanding of it as I perceive, how do I explain it, and do I need to?

 

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?

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.

November 9, 2012

The Things That People Say

Posted in ME/CFS tagged , , , , , , , , , , , , , , at 5:46 pm by Reva

I’m sure I’m not the only person with who hears the same comments time and time again, from people who think they have all the answers to the ones who are just not thinking.  I know that these people mean well and if I didn’t hear some of these things time and time again I probably would be grateful for the comments.  Actually, I usually am grateful because most of the time people are trying to make me feel better or help, but sometimes I hear these comments time and time again and it can just remind me that I have an invisible illness, and ironically remind me that I am NOT well.  I used to answer honestly, but now I just nod and smile.  Here are some of my “favourites”.  Please feel free to add yours.

I hear: I wish I could work a four-day week.  It must be wonderful/do you have kids/what else do you do?

I say: Yep it is

I think: Yeah, well I wish I could work full time

I think: There are a lot of people who are too unwell to work a four day week, so I am pretty lucky

I think: Yeh, well it takes me three days to get everything I need to get done to keep my head above water, minus the social life.

 Hippo

I hear:  What did you do for the weekend?

I say: Not much, caught up on some TV

I think:  Did the washing, caught up on the dishes, put out the garbage and washed my hair then had no energy to do anything else

I hear: Oh that sounds wonderful.  I wish I could have a weekend like that.  I had to go to a party/go dancing/go shopping/visit friends and family/do study/go out for dinner/fly to the moon.

I say:  Sure, it was nice

I think:  I wish I could party/go dancing/go shopping/visit friends and family/do study/go out for dinner/fly to the moon

 Gimp exercice, but the contrail is too blue.

I hear:  You have CFS? My friend’s brother’s wife’s sister’s school teacher had that once!

I say: Really?

I say:Uh-ha

I think:  They didn’t have it once.  Either they had something more short term that had some similar symptoms or they still have  it and are lucky enough to be managing it right now

Lucky

I hear:  Have you tried…?

I say:  No.  Thank you.  I’ll look into it

I think:  No but I’m sure if it was affective I would have heard about it through my ME/CFS networks and there would be someone working hard to prove the theory so they could cure the millions of people suffering everyday and make millions of dollars.  I’ll file it away with the other three thousand seven hundred and eighty two “cures” people have shared with me and when I have the energy, I’ll look into it.

Files

I hear: You look really well.  You must be feeling better!

I say:  Thank you

I think:  Nope.  I just looking in the mirror and realised I looked particularly pale, pasty and zombie-like today so covered it with an extra layer of make-up and got out my good clothes because I haven’t had the strength to wash and iron my work ones.

 

English: zombie

I hear:  So are you better yet?

I say: Nope

I think:  Nope.  I’m over it too.

I think:  I’m coping.  I’m getting out of bed, living my life but I’m not “better”.  I’ve accepted that some days will be better than others, but I continue to push my limits because even though I know I’ll never be “better” I keep hoping for a miracle.

Sleepy

Sleepy (Photo credit: Wikipedia)

November 7, 2012

More of My Journey and the Development of Empathy

Posted in Journey tagged , , , , , , , at 3:25 pm by Reva

After I had no luck with the Elimination Diet I kept researching.  I found a local Naturopath who reportedly specialised in managing ME/CFS.  This was a big deal for me.  In my training as a health professional I’d always seen the evidence behind what Naturopaths practiced to be weak, but modern medicine didn’t have an answer for me so I was willing to give it a chance. I did go in expecting that I’d be put on a wheat and dairy free diet as I thought that’s what all naturopaths did.

The naturopath did a pin prick blood test to check my blood type.  She then laid me on the couch and did a type of reiki.  She asked me what happened in 1992, stating that was the year this all began.  In 1992 I’d developed a rash all over along with general fatigue, and it was put down to a virus when blood tests were negative for Epstein Barr and Ross River viruses.  I was then put on the “Blood Group Diet” and given a series of supplements.

While the scientist in me was strongly against the blood group diet, the patient within was willing to give it a chance.  I figured that maybe she was onto something with the 1992 thing, and while the evidence for the blood group diet was shady it would be harmless assuming I could have a balanced diet.  Ironically my blood group was supposed to not have wheat and dairy.

I persevered for several months, returning to have the supplement tablets adjusted and waiting for that point where I started to feel better.   But that point never came.  I eventually decided I was wasting money on supplements that didn’t seem to be doing anything, and if anything the diet was exhausting to follow.

While I still think as a scientist I think having a chronic illness has given me an insight into the desperation that patients I work with also feel with their own treatments.  When modern medicine doesn’t have the answer I can understand a little about why people clutch at straws.  I’ve recently noticed that I seem to be more open to some of the less mainstream strategies people might want to try.  I can understand when your health professionals don’t have the answer you’re willing to give anything a try, even if the evidence isn’t strong.  While I suspect some people might see this as naive I prefer to think that I’m open minded.

November 4, 2012

It’s Beginning to Look a Little Like Christmas

Posted in Food tagged , , , , , , , , , at 5:01 pm by Reva

I haven’t made a Christmas cake in years, probably because I don’t eat them much and I still have one from four years ago in my pantry.  But I’m a bit of a kid at heart and figure it’s time to start thinking seriously about Christmas (oh yeah, and I have a chronic illness which, if I don’t start preparing early, is likely to turn around and bite me on the bum).  Last weekend I found a recipe in a CWA cook book that was sooooo easy.  I hardly had to standing up at all and there were hardly any dishes to do at the end.  What more could a girl with ME/CFS ask for?

This was so simple.  Saturday night I poured 1.5kg of mixed dried fruit in a bowl.  I sprinkled in some sherry (I didn’t bother measuring), some treacle, a cup of sugar and a grated apple.  I mixed it all together, covered it and left it over night.

The next morning I took off the cover and it smelt like Christmas!!  In a separate bowl I mixed together some flour and mixed spices with some melted butter which had cooled, then stirred in 4 eggs.  Once this was all mixed, I poured it over the macerated fruit, folded it all together and poured it into a prepared cake tin.  I’m not a lover of the white icing so I made pretty patterns on the top with almonds and cherries instead.

Then I popped it into a slow oven and spent a good two to three hours pottering in the garden and reading the Sunday paper while it cooked!!

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