I want a cure…and it’s been too long since I posted

So, this blogging thingy slipped my mind while I worked full time, my partner and I kept getting sick and also trying to paint the house and put down new floors…I was also trying to study! I’m enrolled in a Physics/Astronomy degree online and I’m desperate to do it, but I have to do it one subject at a time and even then that’s often too much. Last semester I had to stop halfway through as it was clear I wasn’t going to be able to manage it.

I’ve come to some realisations: I can’t keep working full time and studying. Even when I’m just working I often barely function and I miss out on a lot of family, social or fun stuff. I can probably work part time and study part time, but that will still mean I can’t do things on the weekends if I have to travel at all. My partners family all live 2 hours away so that’s really hard as I love seeing all the little people!

Why this matters to me is that I have pretty much spent my whole life studying or learning in some way. As a child we had an amazing set of Grolier encyclopedias that had year books and a huge maths book covered in a blue sort of material – I used to sit down and do maths for fun! I still do actually, on the Khan Academy app, they’re amazing!! Here check it our for yourself https://www.khanacademy.org/ . So what does this mean? It means that my goals of studying to PhD level might well be a pipe dream now. I do hold a masters degree in sociology, and I was hoping to further that if I can’t do astrophysics, but I can’t see how I can with the limited energy I have now. Getting up to make breakfast feels like an augean task most days. 

I feel like I’ve lost who I am, my self, my inner ‘me’. Not only that but financially things are tricky now, what’s it going to be like if I lost my part time job? 

I feel pretty done with it all right now 😦 

I said to my partner last night, why couldn’t I have lost a leg, my eyesight, anything other than this unfix-able stupid bloody fatigue and pain! Yes it’s not fair, whinge whinge, that’s where I’m at 😦 

 

 

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My Research (finally)

It’s been a pretty busy year but finally I’m sitting down to take the time to write up my research findings.  First, a little about research: 

  • Research with a single subject can’t be generalised to the wider population, and if this was the goal, more people should have been selected through various sampling measures. This was not the goal though; the goal was just to see if a diet change would effect my experience of fibromyaliga. However, Edward Jenner changed the world by testing the small pox vaccine on one person. Link here; Edward Jenner . In terms of the validity of sampling (selecting participants), the whole population was me for this!
    “Sampling was adopted out of necessity because studying the entire population was not feasible” (Kukull & Ganguli, 2012)
  • My research design was simple; using excel and using a likert scale, track pain and fatigue over a six week period (this ended up being five weeks). Likert scales are used everywhere and may be something like ‘How did you feel in the last week’, then give you 6 options between 0-6 from terrible to fantastic (more info here Likert scales).
  • Self reporting is a commonly used tool in research and does come with a list of potential problems such as bias in reporting…however as I am the expert in my own illness, I am also the perfect person to report on the current state of it. 
  • My categories were the below – chosen because they are the critical elements of my fibromyalgia, and rated from 1-10 

FATIGUE
HEADACHE
LEG/FEET PAIN
HAND PAIN

  • I used the first week as a pre-test, noting down the above categories. 
  • The following five weeks were the actual study where each day I noted the above categories and also noted anything in particular that happened such as a really busy day, week or eating something high in sugar, even fruit. 

A couple of charts from the excel study showing the decrease in all areas, but fatigue is a big one! 

week 1 pretest

week 3

 

 

RESULTS 

So, what did I find? In the pretest week, the average fatigue level was 4 and the average pain levels were 4-5. In the pursuing weeks, the fatigue level dropped to an average of around 2 and similarly pain was between 1 and 3. I realise now that I missed a few days across this time and hence I must undertake this again, which I shall starting next week. 

What can I tell you about my personal experiences that don’t have numbers attached? Prior to this change in diet (see this post diagnosed; what now?) I was spending between 4-6 days in bed, sometimes struggling to function in any way (these numbers are backed up by my partner and mother who live with me).

Now? No days in bed! Now there is the placebo effect to take into consideration, but one of the key factors for this is an expectation that the ‘treatment’ will help. I was hardly expecting anything to happen, in fact quite the opposite (a little bit more about the placebo effect here Placebo effect)

Now, I know this has been a slightly different blog with less of my chatty repartee…but it was important for me to share this. As always, I am not any kind of professional in nutrition  or medicine, I’m just sharing my story! 

What I’ve learned and could have done differently

I should have filled out the daily measurements better and carried out more research. 

Fruit sugar affects me and I need to note that down more diligently. 

KEEP DOING THIS! 

 

References 

Kukull, W. A., & Ganguli, M. (2012). Generalizability: The trees, the forest, and the low-hanging fruit. Neurology, 78(23), 1886-1891. doi: 10.1212/WNL.0b013e318258f812

Delicious news flash!!⚡️⚡️⚡️⚡️⚡️⚡️⚡️

OH MY GOD!

So I made a recipe this morning thinking yeah that’ll be ok, not too sweet but WOW! These chocolate chip coconut flour pumpkin bars from Ambitious kitchen are to die for!! I added cacao nibs in the bars instead of choc chips, then melted dark choc over the top SUPER DOOPER YUMMY!!! Click here for the recipe. 

I sat down to knit and have a coffee and a piece of the pumpkin bars and I had to stop and post this 😊

So…about breakfast

My name is Billy and I’m a breakfastarian 

Breakfast is touted by many people as the most important meal of the day, and for me this is true! This is my history of eating breakfast through most of my life (like many in the Western privileged world)

  • cereal – I love any cereal, but my faves were fruit loops, rice bubbles, cornflakes with honey, sultana bran and porridge (not that instant stuff!) 
  • toast – with butter, jam, nutella and NOT VEGEMITE ugh, I hate it
  • juice – from a bottle, not homemade
  • tea and/or coffee 

When I discovered I needed to avoid gluten and increase my protein three or so years ago, I REALLLLLYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY struggled with breakfast. I’ve tried many things (see the sugar free recipes on the menu tab for a couple, and one I’m about to add). In the long run I became sick of bacon, eggs and avocado. 

Now I know that sugar, dairy, nightshades, grains and processed foods aren’t good for me, I’ve had to change it up even more. I wake up every single day wanting something sweet for breakfast, so I’m challenging that now and thought I would do some research to help me make up my mind. Here’s what I found: 

AUSTRALIAN BUREAU OF STATISTICS 

Census at school data showed that most young people eat cereal for breakfastABS data )

Table 10: What students had for breakfast by state/territory (%)

Breakfast foods
ACT
NSW
NT
Qld
SA
Tas
Vic
WA
Aust
Baked beans/spaghetti
1.7
0.8
2.0
1.5
0.9
1.1
1.0
2.1
1.3
Bread or bread product
23.5
27.5
21.0
27.5
24.2
25.7
27.9
24.5
26.7
Breakfast bar
2.3
1.3
1.8
1.3
0.9
1.2
1.3
1.2
1.3
Breakfast cereal
37.8
36.4
32.2
34.5
40.3
40.1
39.1
37.6
37.4
Did not eat breakfast
20.1
14.1
22.3
15.9
15.7
18.5
12.3
15.2
14.8
Eggs
4.2
6.4
7.9
7.3
5.2
4.5
5.6
6.4
6.2
Fruit/fruit juice
9.5
9.2
7.3
8.9
8.7
8.4
7.8
7.8
8.5
Lollies/potato chips
1.3
0.8
1.8
1.0
0.9
0.9
0.6
0.9
0.9
Meat or meat product
4.2
3.3
5.3
5.2
2.6
2.2
2.5
3.3
3.4
Milk or milk product
15.6
14.4
11.0
12.8
11.9
10.4
12.9
10.3
12.7
Noodles/rice
2.7
3.7
4.0
2.9
1.3
1.0
2.4
2.8
2.7
Soft drink
1.3
0.9
1.8
1.1
0.7
1.1
0.9
1.1
1.0
Tea/coffee
8.7
6.9
6.6
8.0
7.6
8.4
5.6
7.1
7.0
Other
8.9
10.1
7.1
9.6
9.7
8.7
9.1
11.0
9.7

Columns may add to more than 100% because respondents were able to select more than one breakfast food from the list.

Is there anything ‘bad’ about cereal? My question is, is there anything good about it? The sugar content of cereals can be found here  on David Gillespie’s site ‘How much sugar’. He has some great guides to sugar content, worth taking a look! Here are a couple of examples: 

  • Freedom Corn Flakes Gluten Free 19.8% 
  • Just Right Original 31.1%
  • Lowan Cocoa Bombs 29.7%
  • Uncle Toby’s Healthwise for Heart and Circulatory System 30.0% 

I’ve picked things off the list I linked above, and I’m shocked particularly at the Uncle Toby’s ‘healthwise’. How can that much sugar be healthy? It think it’s….

ID-100174868

 

SO much conversation has been bouncing around about how sugar is addictive and unecessary to our lives for years now, and I guess maybe I’m slow on the uptake but I’ve ARRIVED! Sugar is hidden in so many things…yes I know with cereals that may be dried fruit or honey, but do we really know what we’re eating? I’m going on a challenge soon; I’m going to try and find one thing from each shelf in the non fresh food section of the supermarket that has NO sugar. I’m going to time how long it takes me to find one and post results here. 

In the meantime, my goal of savoury breakfast that makes me want to get up in the morning continues (see today’s on the ‘please sir’ menu tab) 

 

Mum’s birthday, morning tea out and a lesson (sorely) learned

 

Yesterday was my mum’s birthday. My partner and I planned it out so that her long time bestie Shushy, and besties sister came down from Queensland, yay! I themed it ‘cats’ and so yeah…it was fun! Here’s me wearing a pair of the crocheted kitty ears Shushy knitted for everyone! I made origami kitties, kitty bunting and various other fun things. Mum loved it!

image

BUT!!!! let’s get to the food part. Shushy can’t eat lots of stuff, my grandaughter is celiac and I can’t eat lots either, so here is what I made: (check out the ‘please sir…’ tab in the menu bar for some of the pics and recipes)

  • Regular bread and gluten free cucumber and cheese sandwiches
  • Gluten free chicken nuggets (cooked by the daughtron)
  • Gluten free sponge fingers with jam and cream
  • Paleo orange and raspberrry friands
  • Paleo four ingredient apple blondies
  • chocolates (of course!)
  • Smiths potato chips – mum’s fave
  • gluten free Pusheen birthday cake  
    image

    Pusheen, such a little cutie! 

    In hindsight, I could have added some fresh fruit and nice cheese, but oh well. I ate one each of the paleo things, a piece of birthday cake and a few pickity bits. The day before Mum, Shush, Kelli and I had ventured out to a lovely tea house where I had NON decaf earl grey, as well as sharing a piece of gf apple tea cake with mum. 

Outcome? 

Sore hands, feet, back and general all over fatigue, aches and pain. A headache worse than any I’ve had in a while too 😦 I was so exhausted I slept for 11 hours last night and actually dreamt about being so tired that I lay down in the dirt and went to sleep and it felt SO good! 

So, lesson learned! No sugar, grains, caffeine continues is the answer for me. People ask me how I can live without those things but I’m grateful to have any kind of functional living without them! I’m lucky really, many people it wouldn’t help. 

Over and out, have a fab week everyone! (recipes going up now 🙂 ) 

Misery guts? How your sugar habit could be ruining your gut health — I Quit Sugar

Do you struggle to think of the last time you weren’t bloated? Or, come to think of it, when you were regular? If your gut is telling you something’s not right, it might be worth having a look at your sugar intake. Western diets (i.e. diets high in sugar and unhealthy fats) are increasingly linked…

via Misery guts? How your sugar habit could be ruining your gut health — I Quit Sugar

  • Here’s a fantastic post from sarah at I quit sugar – think I’ll be getting rid of maple syrup soon too!

Busy times and a ‘flare up’

I’ve struggled with writing this post; not because I’m fatigued but because my food ‘miracle’ turns out just to be half a miracle. I felt great, on top of the world for a month. It’s the best month I’ve had in four years. Don’t get me wrong, I haven’t fallen into an inescapable hole with smooth sides…well anyhow, let me explain. 

Last week: 

LOTS of marking essays – I actually enjoy this part of my job, yes it’s intensive but it gives me some insight into what the students have learned, but also when there are obvious gaps or problems that reappear essay after essay, I get some insight into where I need to put my energy. 

A trip to Sydney for my stepdaughters birthday party (2 hours drive each way), as well as preparing food to take, took from 10 am – 8 pm. I had my 7 year old granddaughter with me and as it was so late she stayed at our place. All up it was a HUGE day, then I woke up at 4 am to finish marking the essays due that day and then… ID-10053229

Well, it wasn’t quite that bad! I didn’t get a migraine that had me sobbing, but it was a 6/10. Tuesday and Wednesday I didn’t do a lot, just bits and pieces around the house and rested a lot too. By Thursday I was starting to feel better and from then till now I’ve had low level fatigue and pain. However, I did spend Saturday morning grocery shopping and running errands, then unpacking all the groceries and then I did some sugar/grain free cooking (check the sugar free pages on the menu to see what I got up to!). When sunday arrived I thought ahhhh rest day! Oh….that’s right, my granddaughter has a gymnastics comp today! Off I went on the 40 minute drive and spent from 10-3 out and I’m tired but still ok. 

So what does this all mean? 

The food helps, yep, but it isn’t going to ‘fix me’. You know what? I knew that before I started but my results were so good I was super hopeful! Alas, no miracles here, but even though I know I’m in a flare up, it’s nowhere near as bad as it once would have been, YAY! I’ve needed panadeine or panadol every night since last Tuesday, but that’s OK 🙂

Well, I’d best go post those recipes and pictures!