June 26, 2013

Where I’ve been

Posted in Food, ME/CFS tagged , , , , , , , , , , , , , , , , , , , , , , , , at 3:59 pm by Reva

I have had a crazy month or so which has kept me away from the computer. To an extent I’m paying for it all now but I’m getting by on the fact that I have a week off work scheduled for three weeks’ time. I made myself take a day off yesterday because I don’t want to be taking a week of holiday leave to sit on a couch if I can help it. The truth is it’ll probably happen but I do have a few things I do want to get done.

So where have I been and what has kept me away?

Three weeks ago there were some big birthdays in my family and I volunteered myself for cake making duties. The first lot of cakes I made were for my Dad. I decided cupcakes would be easiest because they can be easily frozen. I decided to make toppers myself and so that I wasn’t doing them all at once I tried to plan ahead and make them over several weekends. As usual I underestimated how long they would all take and spent my weekends going from the kitchen bench to the couch to rest. I’m so grateful for the stool I use at the bench because I’m sure that helped. I coloured most of the fondant myself, except for the black so ended up with lovely aching hands and arms afterwards. The last weekend before the party I also made up all of the buttercream.

photoThat last weekend before the party was also the weekend before my goddaughter’s birthday. I’d decided months ago that I wanted to make her an apron, and I already had the fabric so between rolling fondant and making buttercream I was cutting fabric. A pattern would have been helpful but I had a picture in my mind of how it would look so I played around with the fabric and hoped for the best, and I actually managed to get it in the post and to her house in time for her birthday.

On my day off the week of the party I made my brother’s cake – a caramel mud cake at his request. It was a very easy cake to make and kept beautifully until it was served four days later. I had great intentions of decorating this cake as a laptop computer and made a fondant keyboard in preparation later the same day.

The following evening I made the chocolate cupcakes – a simple melt and mix cake that made a large quantity. I had decided this would be easier than freezing them – I wouldn’t need to find freezer space, and the recipe was easy and make a large amount of cake. Or so I thought. In the end I had fewer cakes than planned so decided at the last minute to make an extra batch. I had enough of everything except for eggs (as I’m not supposed to be eating them at the moment). I replaced the egg in the mixture with “No Egg”, an egg replacement. Big mistake. All of the cakes came out with a big hole in the middle. They didn’t just not rise, there was literally a hole in the middle. I gave up for the night then.

The next night after work I drove home to my parents for the party, loaded up with cakes and decorations. I have never let myself do that drive in the evening before in winter. The last hour or so of the drive was not great but I wouldn’t exclude doing it again.

With the help of my sister we finished the cupcakes on the afternoon of the party I piped white buttercream on the cupcakes and topped them all with toppers – little red telephones, cameras and bicycles. We were pretty pleased with how they looked in the end (I did have to make an extra batch of cakes though).

The party weekend was a massive one for me between the busy lead up, the long drive then the late night, not to mention the socialising. The nodding and smiling when people kept telling me how “well” I looked. I think I lost count of how often people told me that and I still don’t know how to respond when I don’t feel “well” but I went with nodding and smiling. Easier than going into detail with EVERYONE. And it was truly not everyone’s business how I was really going.

The following night we had a smaller get together for my brother’s birthday. We went to dinner and a local restaurant then return home for dessert. By mid-afternoon the cake was still uncut and un-iced in the container it travelled in. An executive decision was made to go for something easier than originally planned. After some time on Pinterest and Google Images we came up with a plan, and hit the supermarket to stock up on snickers bars, chocolate coated peanuts and caramel sauce. We mixed some caramel sauce through the buttercream icing and lathered it all over the cake. Next we stuck chocolate coated biscuits around the edge. We chopped up the snickers bars and sprinkled them over the cake along with the chocolate coated peanuts, then drizzled more caramel sauce and melted chocolate over the top. Not too bad if I don’t say so myself. And even though I’m not supposed to be eating majority of the ingredients (wheat, cow’s milk, egg and peanuts) right now I had a sneaky little slice – so worth the stomach pains afterwards!

So all of that was more than enough for little old me, but to top it all off there was a family wedding. Knowing that weddings generally involve socialising, late nights and standing, I took care to rest the weekend in between as best I could. For me it also involved some more travel (a shorter trip this time though). As expected it was a late night. I also slept poorly the night before – I think four hours all up – which hasn’t happened to me for ages. There was a lot of standing after the ceremony – I was trying hard to find somewhere for my Nanna to sit so it wasn’t as obvious I was doing it for myself but even poor Nanna had to stand around for a long time. I was fortunate that I could sit for most of the time at the reception though, and even ran into my prep teacher who I haven’t seen for about 25 years which was lovely (also lovely that she remembered me).

So that’s it. Clearly it’s time for a nap because I can see that I’m rambling. Things are getting back to normal now though and I promise not to stay away so long next time!

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 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 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 15, 2012

Asking for Help

Posted in The Bad Days tagged , , at 6:36 pm by Reva

I knew I’d have a lot of trouble getting going today and I was determined to be early because not only had I had a week of unplanned leave, one of my colleagues has just started annual leave and another was due back from three weeks leave.  I also had two students to work with.  I didn’t think it would be setting a great example arriving after them OR not having a clue what I could get them to do.

So in my usual fashion I planned ahead.  I showered last night so I had an extra 5 minutes in bed.  I laid out my clothes to save more time (I usually can’t think straight first thing in the morning so added bonus of not having to thinkabout what to wear).  I made sure I had a bag ready to go with my pager and name tag.  I packed as much of my lunch as possible.  I set an extra alarm ahead of my usual alarm (it’s amazing that extra five minutes to wake up can help so much).  I even made a start on my breakfast which is above and beyond my usual regime but I knew it would be a struggle.  What I didn’t account for was a terrible night’s sleep, a common problem for ME/CFSers but one I’ve managed to overcome in the past few years at least until last night.

My goal was to be at work by 8am because I assumed there’d be a long to-do list to write and get my head around.  I made it before 8.30, but not before the students.  I was pleasantly surprised that not only were they happy to keep themselves occupied until I got my head sorted, but one of their uni supervisors was scheduled to visit and observe them for several hours of the day (ie a few more hours to sort myself).

I was also surprised when their uni supervisor turned out to be the lovely girl who used to pick me up and drive me to my 8am biochemistry Lab when I was in my 2nd year at uni.  We never stayed in touch as we were doing different courses and had no other mutual interests at the time.  I’m not convinced I thanked her properly at the time as I know I was in a massive brain fog at the time (this was the same subject I failed).  It was nice to let her know that even after all these years I appreciated it even if she only had a vague recollection of swinging by the student residences at uni to pick someone up.

I don’t know about other people, but I have a lot of trouble asking for help.  Twice over the weekend I had people (friends) tell me off (kindly) for not telling them I’d been laid up all week, that they would have come to help me out.  I of course thanked them, but in my mind I knew that I probably wouldn’t change things.  I’m fiercely independent, my pantry is full of enough food to survive for weeks, my freezer full of leftovers and my fresh bread, milk and vegetables are delivered. While if someone came to me and offered to do something specific I might accept the help I don’t think I would put myself out there and ask someone to help me.

Today’s conversation, where I learned that something that meant so much and helped me so enormously at the time that it has stuck with me 12 years had not put the woman out at the time. She only has a hazy memory of the same event, which has made me question; am I too independent? Should I (should we all) feel better about asking for help?  And why do I have such a problem with asking? I know I don’t like to put people out, but what I perceive as putting someone out might be no issue if this conversation is anything to go by. What do others do when they need help?