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 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!

April 21, 2013

Back to the Doctor

Posted in Journey, ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , , , at 7:36 pm by Reva

After 4 and a half years I made my way back to my old ME doctor this week. It was a big day – four hours round trip plus a 2 hour appointment and I expected to be in such a mess by the next day (especially given I was so bad last week) that I’d have to call in sick the next day. I was very pleasantly surprised. I don’t know if some of the treatments he has put me on or coincidence but I’m certainly not going to complain.

I explained to him that I think that in addition to not feeling like the treatments I was doing at the time we last spoke were making any significant difference, I had struggled with balancing my years of learning about evidence based practice, so not recommending treatment to clients that don’t have some solid scientific evidence backing it. I told him that I’ve come to accept that the reason that the evidence is so loose in our treatment options because treating ME/CFS is so new and the research is still being done.

We went over what’s been happening since last time we spoke. He told me about the citric acid cycle (also known as the Krebs Cycle) which is one of the body’s mechanisms for producing energy. It usually uses carbohydrates as its main source, however there is some evidence that in people with ME/CFS there is a blockage reducing the body’s ability to use carbohydrate and instead use protein. This reliance on protein might be causing deficits in amino acids which limits the ability of the citric acid to produce energy. He has suggested a protein powder that is 90% protein and contains a complete range of amino acids.

Source: Wikipedia

I went to a health food store after my appointment to buy the powder and they salesman was trying to tell me that I’d go through the product really quickly and tried to sell me the large tub. I assured him that the “small” 750g tub would be more than enough (hello, do I LOOK like someone who does serious muscle building?).

After the discussion about the protein powder he told me that he had growing evidence that dysbiosis was likely to occur in ME/CFS. I need to get my head around this in detail but the basis of it is there are two main types of bacteria in the gut. He is involved in research that is finding that people with ME/CFS have an imbalance of these bacteria, frequently to a point that they don’t find any e. coli in some patients. He went on to explain that this can be then causing changes in the pH of the body…this went on with further explanation that made perfect sense at the time that I can no longer remember. In order to manage this, first a faecal sample would be assessed for the ratio of bacteria and if it was found to be imbalanced it can be treated with a combination of antibiotics and probiotics.

My next stop was across the hall to meet with the practice nurse. First she did a blood test which was looking at my immune reaction to about 60 foods. This was a finger prick test. Apparently the theory is that these foods reactions are linked to the dysbiosis, and that by avoiding the limited foods there may be an improvement in symptoms. Once the dysbiosis is treated the foods can usually be reintroduced. I reacted to wheat, cow’s milk, egg, yeast, corn, legumes and peanuts. I was told I only had mild reactions so the nurse said I don’t need to be super strict, but she said the cow’s milk and egg are probably the ones to be most strict with.

Doctor wanted me to re-do the standing test I did back when I first visited him as the first I was so borderline for POTS. I didn’t get the results for that as he’d left the office for a bit when I finished. I actually didn’t get light headed through it, although my legs were extremely shaky and I felt like I was swaying.

Lastly I was sent off with a heap of papers, and blood test requests arrived in the mail the next day. I return to see him in three months and in that time I still have to have a heap of blood tests, urine tests, faecal tests (or as the doctor put it, “wee and poo tests”) and breath tests. Just to keep things fun the nearest place to do the breath tests is about an hour and a quarter away, I have to go on three separate occasions and have to arrive no later than 9am on each occasion. That should be fun.

In the meantime, I’ve started the taking the protein powder – I took it the first afternoon when I arrived home and I’m not sure if it’s behind by good recovery or if it’s coincidence but I guess we’ll see – and I’m phasing in the dietary changes. I think I’ll leave that challenge to another day.

October 27, 2012

Elimination Diet

Posted in Journey tagged , , , , , , , , , , , at 5:00 pm by Reva

Many people I spoke to reported that they had food and chemical intolerances which triggered their ME/CFS symptoms.  Now this was something I could relate too!  I am a health professional with a particular interest in the science of nutrition.   I looked into the RPAH Elimination diet which is a strict diet that eliminates food chemicals from the diet and allows a person to identify what chemicals they react to and in what sort of quantities.

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Foods we eat naturally contain many food chemicals.  There is evidence that in some people certain food chemicals can cause various symptoms.  The basic idea of the diet is to eliminate all the foods that contain food chemicals that are suspected to be the cause of these various symptoms from the diet until you have 3 consecutive symptom free days, and then you introduce small groups of foods in set amounts that contain specific chemicals to test your reaction to different food chemicals.  Once you identify the food chemicals that cause or worsen your symptoms you can then work out what load you can tolerate then learn how to limit them in your everyday day with the hope of minimising symptoms all together.

After following the strict diet for 2 weeks I had not noticed any improvement in my symptoms so the next stage was to remove wheat and dairy from my diet and wait for the symptom free days.  I waited to wake up with some improvement (or secretly to jump out of bed a go for a run) but after four weeks I felt no better.  Normally this is the point where you’d stop the diet and admit that food is not the problem, but on discussion with my colleagues we thought that maybe there had been gradual improvement which I may not have noticed.  I decided to try the “food challenges” with the theory being by reintroducing a large load of the chemicals I might suddenly worsen I could focus on that food chemical.  Each chemical is tested for 3-7 days, and there has to be a 3 day “wash out” between each chemical.  All I achieved from the whole process was a massive head cold (and ironically, I don’t get sick).

I discourage anyone from trying this process without the support of a health professional – ideally a dietitian specialising in food intolerances who are found in allergy units in major hospitals.  I managed to get myself sick, I’m sure relating to some sort of nutrient imbalance from such a restricted diet. I stopped the diet after about 3 months without any more answers.

Edit: This is one of the only sources of information I could find on ME/CFS and the RPAH elimination diet when I was looking into it.  Most of the research is around other symptoms including migraines.