April 14, 2013

Where did the weekend go?

Posted in Food, ME/CFS tagged , , , , , , , , , , , , , , , at 8:52 pm by Reva

I’ve written half a dozen blog posts in my head this weekend but do you think I can remember any of it? To top it off I think my brain is mush and my house looks like it’s been ransacked. I was determined to have the house looking at least tidy by the time the weekend was over but there are still dirty dishes on the bench, you can’t see the top of the kitchen table and the doona that I took the cover off last weekend is still lying on the floor. The dog has stolen the good spot on the couch – in fact she’s walking circles at the moment rearranging herself. Okay, I know that she’s a small fluffy thing that I could move but she looks so cute (and by the good spot I mean I would lie down there amongst the cushions and quilt, and not write anything at all). I promise I’ll move her when I’m done.

As my brain is just mush I’m just going to see what comes out. Oh, I did do some fun stuff at the beginning of the weekend (I had a bonus weekend day on Friday). A friend invited me over with some other ladies for a “macaron masterclass”. It was so lovely to be able to learn something new and I enjoyed sitting around drinking coffee, eating good food and just generally chatting. I did try to make some myself when I got home (love my new stool – I sat down the whole time) and I think I can honestly say, without a doubt, they were a disaster. I accidentally added the sugar too early, and eventually too much sugar all together so that they were extremely sticky when they first came out of the oven, and then so so crunchy. Like a rock. I did want to try again but when I woke up this morning a faced the fact that I really didn’t have the capacity to do it. Then I spent four hours sitting on the couch. I did a lot of that this weekend.

I have a few blog posts mentally planned, some even started, but I require more brain capacity than I have right now so I think I’ll just give you some pictures of my macarons from our masterclass (not the disaster ones – they weren’t pretty) and attempt to do a better job of writing next week

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December 13, 2012

Angst-ridden Adolescence

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

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

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

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

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

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

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

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

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

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

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 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)

October 24, 2012

The Confusion That Ensued

Posted in Journey tagged , , , , , , , , at 7:56 pm by Reva

So now I had a diagnosis I thought the search was over. But in reality it was just beginning. I wanted to find out how it was treated but with so little support this was difficult. I hit the internet and found a forum. The forum was a great way to read about other peoples’ experiences, but also it put me in touch with people who could understand what I was going through.

Eventually though the forum became overwhelming. All the things other people seemed to be trying, discussing. I found that I didn’t know where I fit in – all these people had been diagnosed with “Chronic Fatigue Syndrome” or “ME”. I’d been diagnosed with “a fatigue syndrome”. Was this the same thing? Some people seemed to get really hung up on the details.

While I found some wonderfully supportive people (some whom I still keep in touch with) and I found the forum to be helpful overall, the cattiness over who really had ME/CFS and what it was really called, what a proper diagnosis entails and so on had me confused and was exhausting. The solace I initially found was disappearing and I wondered if I was relying too much on the cyber world so I stopped spending time there.

October 22, 2012

The Discovery of Friendship

Posted in Progress tagged , , , , at 7:35 pm by Reva

Developing a chronic illness has opened my eyes to different types of friendships.  I know it’s a cliché, but you learn who your real friends are.

Soon after my diagnosis I returned to Melbourne for a friend’s engagement party.  It was a big deal for me.  I didn’t really know anyone else going, I had to travel which is exhausting – the waiting around in airports, sitting in uncomfortable seats, carrying around luggage, getting across the city. I wanted to catch up with so many people, but I knew that I had to be careful so I decided to email the people I hoped to catch up with.  Some of the people who made the effort surprised me and I was so excited that they’d made the effort as they’d been people who I hadn’t spent a lot of time with in the past.  On the other hand some who I’d felt really close to wanted me to travel 20minutes out of town to “meet me halfway” (I’d already travelled interstate so felt I’d already come halfway) obviously having no comprehension of what that further 20 minutes (or 40 minutes return) on public transport meant for my capabilities of getting through the weekend.  Others still who I’d considered close friends didn’t even respond.

Over the years this pattern continued, the people who I thought were my closest friends were there when the going was good, when they were celebrating or when they needed someone to talk to.  But the moment I was sick, too unwell to travel, to celebrate or I needed to talk they were busy, or they simply disappeared.

I spent too much time dwelling on this, wondering if it was the ME/CFS, the natural course of growing up or maybe it was just me.  Slowly over time I worked through this and eventually I accepted that no matter the reason I had nothing against these friends but I no longer had the energy for one sided friendships.  My condition was draining and it was time I took a step back and focused on myself.

I realised I’d reached a level of acceptance when I found out via Facebook that someone who I’d considered a close friend had recently had a baby.  I didn’t know she was pregnant.  The last time I’d seen this friend I’d travelled into the city, 3 hour round trip by public transport, to meet her for lunch.  When we left off she was going to get in touch – she was going to be in my area in a few weeks so she was going to let me know what the dates were and we were going to catch up for a girls night.  I haven’t heard from her since.  I few years earlier this would have had me in a complete mess but when I saw the pictures I actually laughed out loud.  I was surprised but it finally hit me how much energy I’d wasted over the years trying to keep some friendships alive.

I now have a new outlook.  The people who matter understand that there are days I can’t do what I want to do.  There are times when my life is pretty mundane and boring purely because I physically am barely keeping up with day to day life.  They understand that talking on the phone can be draining but send me text messages, talk on the phone and when I do the interstate trips they understand that I need a day of rest when I arrive and need to factor in another at the end.

ME/CFS is a socially isolating condition, and while it has taken me some time, letting go of those one sided friendships has ironically made me feel less isolated.