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!

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May 11, 2013

A Crystal Ball Maybe?

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , , , , , , at 9:41 pm by Reva

Tonight I was at dinner with some colleagues. Towards the end of the dinner one person “shushed” the rest of the group and when everyone was quiet she asked “when do you girls plan on becoming mums?” I find this to be an inappropriate question to ask a group of people that are colleagues, not close friends. And to be honest there were probably only one or two people there that I’d consider to be friends. I’m not sure if it’s just because I didn’t know how to answer, or at least I didn’t know how to answer in the company of this particular group, but I think it goes further than that.

I think that this is such a personal thing. I hear friends who get frustrated being asked the question “so when will you have kids?” when they’ve barely finished walking down the proverbial aisle. How do people feel it’s their right to know? How do they know that the couple haven’t made the decision that having a child isn’t for them? Or even more awkward, they have been trying for years and been experiencing heartbreak for years.

A few years ago my friend went with her mum to an afternoon tea. She took along her young son who played quietly. One of the ladies, innocently I’m sure, told her how wonderfully behave her son was, then asked when she would be giving her mother another grandchild. My friend had a difficult pregnancy and didn’t have an easy time when her son was an infant. On top of this she has her own chronic health problems. Even if this wasn’t the case she was well within her rights to respond as she did. She told her mother’s friend (and everyone else in the room who’s ears likely pricked up at the question) that she in fact had been going through IVF, and until the week earlier had been pregnant. I was so proud of her putting up this response in the hope that maybe, just maybe these ladies might think twice before asking such intrusive questions to other women in the future.

This evenings question has made me think that maybe I need to come up with my own response to these questions. What’s a concise way of saying that I’m single and in my 30s? I have chronic health condition that seems to send men running. I don’t really get out much and when I do I don’t tend to meet many new people anyway (meeting new people is EXHAUSTING). Sure you don’t need a man to have kids these days, and it’s crossed my mind to go it alone. But I also don’t think I have the capacity to go it alone. I’m sure I could emotionally, but what about those days that I can’t move from the couch? I can ignore the dog crying at the door but I couldn’t do the same to a child. I know some amazing people who have similar medical conditions to me who do have loving partners and families, so I know it can be done and I’m absolutely not ruling out becoming a mother. But if I am to have children, first I need to find a man who loves me, and who I love. I don’t need a perfect man but I do need that man to be supportive, one who sees bringing up children as a joint role, not one left entirely to the mother (yes I have met men who still believe that it’s the mother’s job). I’m almost certain that if I have children I won’t be able to work so that man would also have to be prepared to live a single-income lifestyle, one where money and possessions aren’t everything. I need a man who can accept that sometimes I can’t always follow through and do the things I want, that sometimes I have to cancel plans at the last minute, that I can’t always be as spontaneous as I might like.

So when will I become a mum? I’ll become a mum when and if I’m ready. And if that window of time passes before I meet that man, or I meet that man and we decide not to, or can’t, have children, or I never meet that man, then maybe it wasn’t meant to be. I’ve been assured that my Goddaughter will be coming to live with me when she hits the rebellious stage so it looks like I will be lucky enough to have the experience of dealing with a difficult teenager (or preteen if she follows in the footsteps of her cousins) even if I skip the infant/toddler stage. In the meantime I’ll appreciate my quiet morning breakfasts spending hours reading the paper over coffee, I’ll appreciate being able to come home and reheat leftovers if I can’t be bothered cooking, or can’t find a vegetable in the house, I’ll appreciate watching what I want to watch because hopefully one day I won’t get to do it anymore.

May 5, 2013

An Update

Posted in ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , at 5:34 pm by Reva

I’ve been a little distracted these last few weeks by some issues at work. Not good, but if anything it’s made me realise that something is working. I say this as I’m sitting in my pyjamas at 4pm on a Sunday afternoon, with 4 weeks’ worth of clean washing piled up in my bedroom (I have been digging through it that pile for 3 weeks but it’s starting to look a little wrinkly), food spread from one end of the kitchen to the other (lucky it’s a small kitchen) and a pile of reading (lots of journal articles on IgG antibody reactions to food, and it’s links to leaky gut/IBS/ME-CFS).

If I ignore all of this and how it looks on the surface I have realised that for the last 2 weeks I have done all my own food preparation. I had planned to introduce this slowly after three months of doing virtually no food shopping/preparation etc but given my newly identified food intolerances I’ve thrown myself into shopping/cooking/washing up. I honestly don’t know how people with multiple food allergies do it. I am grateful that my reaction to the foods is mild and I’ve been told not to be concerned if I have trace amounts of the foods I react to, but I’m doing my best to avoid the trigger foods completely. It’s only temporary as the theory is that it can be treated (there’s an article on this in the journal pile). Anyway, I digress. Despite this sudden increase in activity I have not felt worse. Some of this improvement was starting before I made the dietary changes, I was starting to realise that as I was walking to my car after work I wasn’t focused on how many minutes it would be until I could lie down, and how much every inch of me ached. I was concerned that as I reintroduced shopping/cooking and washing up so suddenly I’d go backwards, but after a 2 week phase in period and a week of completely following the restrictions I haven’t crashed (touch wood).

My first step was to clean out my pantry and fridge. I put aside anything that was open but did not meet my new dietary needs and gave myself a week and a half to use it up. Anything that was still here the day the cleaner was expected would be binned. Anything not open has been put aside to donate. Everything else was put back in and a shopping list was written. So now everything in my pantry is safe for me to eat, except for a few staples that I’ve hidden up the back for guests (and the peanut butter which is Maisie’s)

I usually love eating out, but I was a bit worried about the first time I ate a meal out. I’m not one to make a fuss and usually I’m grateful I can have whatever I want. I figured eating out at breakfast would be a challenge. No wheat, No eggs. I was ready to just have a soy latte. But with some minor adjustments to the menu item I got this:

A vegie breakfast with mushrooms, tomato, hashbrown, spinach and avocado…minus the Turkish bread and hollandaise sauce, with a side of bacon. Yum!! It kept me full for hours too. With a soy latte of course.

I’ve also been doing my best to keep the food I cook at home interesting. Here are some of my creations:

                               
On the left I have my oat and rye porridge with stewed apples, almonds and honey which was my breakfast yesterday morning. And on the right, field mushrooms from the local farmers market stuffed with rice, zucchini, capsicum, onion ad broccoli, topped with pine nuts and goat’s cheese.

So really I’ve only been following the dietary changes for a week. I’m not sure that’s long enough to make any conclusive judgements. Actually, I’m sure it’s not long enough. But I’m certainly not feeling any worse, and these changes aren’t going to be harmful. And I’m having fun experimenting in the kitchen as a bonus!

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

October 12, 2012

Big Day Out

Posted in Progress tagged , , , at 2:25 pm by Reva

Woo hoo!  I’ve been outside.  In the (cold) fresh air! And had human contact! And coffee! And cake!  Small things hey?  I’m not used to being cooped up for so long.  I usually push myself back to work after a day or two because living alone I start going stir crazy home alone for much longer.

This week I’ve had conversations (in person) to 2 people – my GP and the pathology nurse who took my bloods (oh I guess the receptionist at the GP too).  So when one of my lovely colleagues told me last night she had an ADO and asked if I’d like to go for coffee I jumped at the chance.  Human Contact!!  Fresh Air!!  Oh, and an opportunity to start easing my body into normality before heading back to what is likely to be a crazy busy week at work next week.

We went to this gorgeous little cafe that she found earlier in the week.  It was quiet, there were no fluro lights, parking was good so I didn’t have to walk too far…and the food was great.  It has only recently opened and I think it must in in a heritage listed building – the wall paper was peeling off the walls in places and there were signs asking people to not remove it.  It was furnished with old farmhouse style wooden tables.  The food was cooked on site and the lemon lattice slice was beautiful.  If my brain wasn’t still slightly in a fog I would have remembered to take a photo (I’ll have to go back 😛 )

Anyway, it was enough to wear me out for one day (and I have a few jobs I need to get done through the day).  So that’s all I’m writing today (I just wanted to share what on a normal week is no big deal but this week feels like huge progress).