Author: Sonja

One woman’s journey as she comes to terms with living with Fibromyalgia. Living with her knight in tarnished armour, with a small flock of chickens, and pair of Tawny Frogmouths and a homicidal Butcher Bird in the backyard.

Metabolic Balance – Phase two (Plus bonus recipe!)

A couple of weeks ago I started my latest dietary program called Metabolic Balance. I was a little apprehensive about it as I mentioned in my first post about it here.

I successfully navigated Phase One without dying. Although by the third morning I did think that was a possibility. If anyone doesn’t believe that food can affect mood, then I challenge you to just eat vegetables and ZERO fat or protein (yes I know that many vegetables contain protein, but I mean eggs, dairy, meat, legumes, nuts, seeds, etc.) See how you feel by day 3. Then have some protein.

For me, it was like night and day. Within 30 mins I was feeling brighter, my headache had receded to a manageable level and I no longer felt nauseated. By the end of that day, I was even feeling happy.

The next two weeks I settled into Phase Two – the strict conversion phase. Phase Two is where the Metabolic Balance Rules come in. There’s eight of them but they aren’t too difficult to follow most of the time.

I also had my personalised meal plan. My plan includes a lot of things I very much like, and a few that I don’t. There’s a fair amount of variety, which allows me to be creative.

One of the things I am grateful for – something I became more conscious of after starting my gratitude practice – is my ability to cook. My parents encouraged me when I was young to bake and cook. By the time I was 7, I could make a chocolate cake from my kids cookbook (Mum or Dad would put it in the oven and take it out) and by the time I was 11 or 12, I could do simple dinners. I made a god awful mess when I did it, but it’s a skill I am grateful to have. (I do make less mess now, not that the Knight thinks so!)

That skill has allowed me to be quite confident in coming up with creative ways to prepare the ingredients in my plan.

One of the meals I am particularly proud of (and have made more than once!) is a butternut pumpkin (squash if you’re American) and blackberry tart. Sounds a bit weird – but it’s super tasty! You could add a bit of maple syrup or honey if you wanted it sweeter, but I’m not allowed them, and I found it sweet enough as is. I’m sure you could substitute other berries, but I would go for sweet ones like blueberries or strawberries.

I hadn’t actually planned on this becoming  a recipe post, but sometimes you get unexpected bonuses in life!

Butternut Pumpkin and Blackberry Tart

Ingredients:

  • 40g nuts and/or seeds
  • 2 tsp coconut oil (I omitted this in the first 2 weeks, but it’s better with it)
  • cinnamon to taste
  • 80g butternut pumpkin
  • 100g frozen blackberries (can use fresh, but reduce cooking time)
  • 1/2 tsp spice mix (I recommend my turmeric drink mix)

Method:

  1. Pre-heat the oven to 180°C.
  2. Grind the nuts and seeds in a coffee/spice grinder. You could also use commercial nut meal if you don’t have a way to grind nuts.
  3. Add 1 tsp of the  coconut oil and cinnamon and enough water to make a soft sticky dough.
  4. Line a small flan or pie dish with baking paper and press the dough into the bottom and up the sides. This is not a dough that will roll out – you’ll have to get your hands dirty.
  5. Bake in the oven for 8 mins. I didn’t bother with weights as the ‘pastry’ won’t rise.
  6. While the base is in the oven, boil the pumpkin until it can be easily mashed with a fork (if you cut it very small, this will take less time). Drain the water, but reserve some in case your pumpkin mash is too thick.
  7. Mash the pumpkin with the spice mix and the rest of the coconut oil, add some of the reserved liquid if required to make the mash quite runny. You don’t want soup, but it needs to be sloppy.
  8. Place blackberries in the tart base, spoon pumpkin mash over the top and give it a gentle squashing. Sprinkle with a little more cinnamon.
  9. Bake for another 10 mins.

Tip: You can pre-boil the pumpkin use it cold, just add a few minutes to the cooking time.

Serve on its own, or with a blob of cream or yogurt.

Enjoy!

Practicing gratitude

Folk rocker Stephen Stills sang, “If you can’t be with the one you love, love the one you’re with.” Now hold onto that ear-worm while I ramble a bit before I get to my point.

As I’m lucky enough to have found and married my soul mate (AKA the Knight in Tarnished Armour), I get to be with the one I love. But the song has a different meaning for me now.

So many of us FibroWarriors mourn the loss of our old lives. I know I still do at times. I miss being a vet – a job I loved and spent most of my life working towards. I miss having pain free days. I miss that when I got a cold or flu or injury that there was going to be an end to the discomfort.  I miss my independence. Most of all I miss my energy. I still hate having to ration my “spoons”. (If you aren’t familiar with “The Spoon Theory” by Christine Miserandio, then go here to have a read.)

But my psychologist has given me a challenge – to practice gratitude. To this end she recommended that I write a gratitude journal. But she gave me some extra guidelines. I have to write three things every day that are specific to that day and not worded in the negative.

So I can’t just say I’m grateful for a roof over my head, electricity and running water – unless there’s something specific to that day, like a hail storm. And I can’t say that I’m grateful I’m not as bad as such and such.

Some days it’s easy. If I’m having a good day, then it’s much easier to see the bright side of things. But when I woke up yesterday in a mild flare, it was much more of a challenge. I sat down and did it anyway. I think I stared at that blank page for a good 10 minutes before the first thing came. It took less time for the second and by the third I found that there was actually a lot of little things that I was grateful for, despite the FibroTroll beating me with his club.

And what came out of it?

Well….

My pain stayed exactly the same. But I smiled. Just a little smile, but it was real and it made it that bit easier to cope. And I felt more motivated, I got in the bath and had a good soak in Epsom salts. I didn’t cancel my hairdresser (the lovely Anita from Ex-hair-lent comes to my house so I don’t have to go anywhere). After that, I went downstairs to cuddle my broody chicken Magrat. I’m not sure that she was grateful for that, but she probably forgave me when I dug some bugs out of the compost bin for her.

So what does all this have to do with that song?

It comes down to this. I can’t be in my old life, but I can do my best to love the life I have right now. I don’t have to love all of it. I can’t and won’t love all of it. But I can and will love some of it.

Why I don’t hate my body – even though I’m chronically ill.

Being chronically ill is hard. It’s hard to be in pain all day, every day – never having a single pain-free day or even an hour. It’s hard to have symptoms like fatigue, nausea, tender lymph nodes, IBS and thermoregulation issues without knowing if there is ever going to be an end to them. It’s hard not knowing how bad it will be when you wake up, or if anything is going to happen to make your symptoms worse.

It’s frustrating and annoying to not be able to be sure if you can make it to a function or appointment or even the shower on any given day. It’s embarrassing to lose your balance in public, forget your words, or completely forget what someone just told you 30 seconds ago.

It’s heartbreaking to do all the right things, eat right, take your supplements and/or medications, meditate, do yoga, do all the things that are supposed to help and then find that your symptoms are flaring up anyway. Or you do just one thing that a “normal person” could do and suddenly the FibroTroll is having a party and has invited all his friends.

When this happens, it’s easy to hate your body. You feel like it’s somehow letting you down. You compare yourself to all the other people in their late 30’s having kids and working and still managing a household and social life and you feel betrayed by your own body.

But I don’t hate my body. At least not anymore.

My body is amazing. Sure, it’s gotten a bit squishy since I haven’t been able to exercise as much, and I’ve lost a lost of muscle strength, and I could stand to lose a couple of kilos, but it’s still pretty amazing. If I cut myself, within seconds my body has started the process it needs to heal that cut. If I bruise myself, it will breakdown all of those escaped red blood cells and process them so that the bruise heals and fades with time. If I were to break a bone – the doctors and surgeons would set it and/or do surgery on it which would put the bone in the position where MY BODY would repair that bone back to (in most cases) full function.

So I choose to trust that my body is doing the best it can right now. No-one knows for certain what causes Fibromyalgia. There are lots of theories – autoimmune disorders, neurological disorders, peripheral  nerve disorders to name a few. There may even be an as yet undiscovered virus, bacteria, parasite, fungus, prion or other type of organism that is causing it. Whatever the cause, my body is trying.  It has a dysfunction of some form and it’s doing the best it can to function with the crap hand it got dealt.

I do what I can to help it along. I feed it good food (right now that means strictly following my Metabolic Balance plan), I meditate, I do yoga, I have regular Epsom salt baths, I get in my HBO2 chamber most days and I have recently started both a gratitude journal and positive affirmations. (I’ll write more about them later.) And when my body flares up in pain or any other symptoms, I try to give myself the compassion I would give to someone else.

I won’t lie. It’s a work in progress. It’s frustrating and difficult when I suddenly need to lie down on the floor because otherwise I’ll either vomit or fall down (or both), or suddenly being ridiculously cold to the point where I am shivering under an electric blanket, or my personal favourite – be achingly cold in the legs and nauseatingly hot in the upper body AT THE SAME TIME! At those times its very hard to stop the negative self-talk.

I am working on acceptance with my psychologist. I’m still struggling with separating acceptance and surrender. I refuse to give up trying to get well, but over time I am reaching the point where I can acknowledge that my body is fighting an invader that I can’t identify and that it needs my help – not my hate – to get through whatever symptom my body is throwing out. So instead of allowing that internal voice that says I hate my body when it’s flaring, I’m thanking it for trying and assessing what I need to do to help it right now.

And on this cold, rainy day, it’s telling me I need to go have a bath. So that’s what I’ll do!

 

 

 

Metabolic Balance – Phase one

I mentioned in my previous post I am embarking on a new treatment protocol in my journey to kick the FibroTroll’s butt. It’s called Metabolic Balance.

The blood tests required ended up being a little more involved than really necessary because the lab missed a couple of crucial tests. Partly because they aren’t covered by medicare, except in situations which don’t apply to me (even though I signed a form saying I’d pay for them anyway!) But finally we got what we needed.

I got a bit impatient and convinced Juanita (my wonderful naturopath) that I could start phase one without the plan. I have a welcome back to the country & family birthday dinner coming up this week and I either wanted phase one out of the way before then or I wouldn’t be starting until after that.

Phase one is a cleansing phase. It’s enough to give you the shits. LITERALLY. It goes for two days. There’s a few options – fruit only, potato only, vegetable only or rice only. Now I know too much sugar attracts the FibroTroll, so fruit only was out. I LOVE potato, but without being allowed any form of fat, it was less appealing, I haven’t eaten rice in about 18 months, so I didn’t think my intestinal flora would be very happy if I chose that. So vegetables it was to be.  Together with the veggies, I also needed to take high doses of magnesium.

Day one: It really wasn’t too bad. Only a little daunted by the prospect of eating 1.5 kg vegetables over 3 meals, I set to making it work.

I started with a sweet potato and carrot soup – which was rather nice, and I wish I’d written down the recipe. I just sort of threw 500g of different vegetables into my Cuisine Companion with some water and herbs and pressed ‘go’ on the soup function. Here it is together with a black tea and my double dose of magnesium.

 

Lunch was a big bowl of steamed veggies with some herbs and salt sprinkled on for flavour. It was a little boring without any fat, but I got through about 450 g of veg easily enough. Throughout the afternoon the high dose of magnesium was beginning to make itself known. I’m glad I was alone at home, as it’s possible that I might have gassed someone to death.

Dinner was pumpkin soup – not as nice as my usual one that I make with chicken or turkey stock, but it was good enough. I didn’t bother with a picture, because frankly – it looked much the same as my breakfast soup. I couldn’t manage 500 g, I got through about 300 g before I called it quits.  So I managed to get through about 1.25kg of vegetables. Plus another double dose of magnesium.

Day two: Today was a lot less fun.

Sometime around midnight, those four doses of magnesium became a whole lot more insistent. So I was up and off to the toilet. Then again at around 5am, then just before 7am. For the next hour or so, I hovered close to the toilet. I struggled to get through my breakfast of pumpkin soup – not because it was hard to eat, but I had to keep getting up to rush to the loo! One more dose of magnesium – which I drank with some trepidation.

Things settled down after around 8 am. I pottered around the house, doing a few odd jobs in little bursts (I have a post about pacing housework here.)

 

For lunch I had some baked sweet potato and zucchini (again, not quite as nice when made without fat) and some raw veggies and salad. Again, I managed around 450 g or so. There really is a limit to how much vegetable matter you can squash into your stomach in one sitting!

 

Throughout the afternoon I got progressively more miserable and cranky. I had a headache, my guts were grumbling. My wonderful Knight In Tarnished Armour came home and we played a card game (Star Realms this time – incidentally I kicked his butt for a change!) and that helped my mood a little, but not the headache.

Things weren’t helped by having to contact the Doctor’s surgery multiple times over the last two days chasing up the last missing blood test results.

Pretty soon I was hungry again. But as I needed to wait 5 hours between meals, my Knight suggested I head off to my HBO2 chamber. (I think there’s a chance he just wanted my cranky, miserable face hidden away for an hour or two!) But it did me a world of good as it usually does.

More pumpkin soup for dinner, with a chaser of cucumber as I really wanted something crunchy. Thankfully, no more magnesium with dinner. Especially as the morning dose was making itself known again with several more trips to the loo!

We finally had everything we needed for the lovely Juanita to send my details off for analysis. Which I was grateful for, as the prospect of another day of just vegetables was not making me happy. My headache was not responding to pain relief, so I headed off to bed.

Day 3: I’ve decided I might live. It was touch and go this morning.

Another midnight dash to the loo, then hanging around the loo from 5:30 am until about 7 am. I had a pounding headache every time I woke up and I felt awful!

One of the recommendations of metabolic balance is to eat within 30 mins of rising. Now I wasn’t going to hassle Juanita at 5:30am to see if my plan had come back and given that what was coming out of me looked much the same as the pumpkin soup, (sorry TMI!) I just couldn’t handle pumpkin soup for breakfast again. So I tried some steamed veggies. This did not go well. I got about 200 g in before I wanted to vomit – but I was still hungry! My head was still pounding and all I could manage was some black tea.

So at about 7 am I sent an sms to Juanita. She rang me back within 15 mins which is an impressive feat when she has a little one at home! She really is an amazing woman. My plan was back, and although it wasn’t quite the way she likes to do things, she emailed it through to me so that I could eat something!

So I had some nuts and seeds and an apple. You wouldn’t believe the difference. My headache has receded and I’m feeling a whole lot brighter. Now I’m still a bit hungry, but not so terribly nauseated. I’m looking forward to lunch (still 3 hours away as I write this) but no longer feel the need to curl up in a ball and cry.

This afternoon the Knight will take me up to see Juanita, so we can go through the plan properly. And, being the awesome husband he is, he’ll also go shopping to buy any of the things from the plan that we don’t already have.

If you are about to embark on a Metabolic Balance journey, I strongly recommend waiting until you get your plan – and ensuring you have the right foods ready and waiting for breakfast on day 3. I’m sure things would have been a lot smoother for me if I had done so!

 

 

 

More on food and Fibromyalgia.

I’ve talked about food a few times. Obviously it’s an essential part of life, but there is no single diet that is perfect for every person. There are many arguments about the ‘best’ diet for FibroWarriors and I’ve done a lot of them.

As I’ve mentioned before, I was doing GAPS. I did it for a little over a year and while it helped me A LOT, I feel like it’s not quite right. I played around with The Wahl’s Protocol and it resonated with me a lot, but I quickly got distracted by the ketogenic diet. At first I was a little disheartened with the attitude of some people in the keto community. Many people are so focused on their macros, that they fail to look at the quality of the food they are eating. I refuse to believe that a food-like substance full of artificial sweeteners and flavours is better for you than a banana. But there are options for whole-food keto. People like Dr Wahls, Leanne Vogel  from healthful pursuit , and Dr Will Cole  all promote whole food keto diets (Dr Cole even does 100% plant-based versions, if that is important to you). So I gave it a go.

At first I was doing well on keto, but I found it wasn’t fantastic for my mental health. Not being able to simply eat a piece of fruit was driving me a little batty. Also, monk fruit and stevia both taste disgusting in my opinion. I can definitely see how it could be very good if done correctly for some people and maybe in the future it will work for me. So I went back to a combination of Wahls (but only on level 2 rather than the keto version) and GAPS. By this, I mean I follow Dr Wahls’ guidelines, while still having my bone broth and fermented foods that are recommended on GAPS. I finally cut the dairy back out (which was tough, because I LOVE cheese) and eat sweet potato regularly (and occasionally potato – OMNOMNOM!).

While I’m relatively happy doing this, and it seems slightly better than straight GAPS for me, I still feel like I’m missing something. So I’ve decided to try something new.

It’s called Metabolic Balance. From what I know so far, it starts with a comprehensive blood test and then a tailor-made food program is designed for you. I’m a little apprehensive about it, I’m worried it will be too restrictive and difficult. I’m concerned that there is a pantry and freezer full of food that I won’t be able to eat and I hate waste. It’s expensive and I’m scared it won’t work. That I’ll do all of this weighing and restriction (having flashbacks to keto) and at the end of it I won’t be any better.

But on the other side of this, is my naturopath. Juanita from Red Suva is an amazing woman. She really wants to help me get well. I’ve been seeing her for years and she has helped me with my PCOS and dysmenorrhoea, and the haemorrhagic cysts I got from the Mirena IUD. She put me onto GAPS, which has significantly improved my digestion and IBS and my skin has never been clearer. I trust her. And one of the reasons that I do trust her, is her willingness to say, “OK, that isn’t working, let’s stop and try something else.” She knows that there isn’t a cure (yet!) for Fibromyalgia and doesn’t claim to have all the answers. What she does, and does well, is care. She supports and encourages, sympathises when things aren’t going well, and on occasion kicks my arse (gently).

So because she thinks that this Metabolic Balance thing might help me, I’m going to give it a go. This morning my fantastic, long-suffering Knight in Tarnished Armour got up early and drove me to have my fasted blood test. Then he drove me home and made me breakfast. The blood test results will be back in a day or two, then the lovely Juanita will send them to Metabolic Balance for analysis, and then she will help me with the next stage.

Wish me luck!

I’m still around!

I haven’t posted anything for a while. It’s taken some time to work out why. Then once I did, it took a bit longer to start the steps needed to resolve the issue.

I was a member of a Facebook support group. I still am a member of other support groups, but I say was a member as I finally followed through on my decision to leave this one particular group. I won’t name it, because it’s a great group and some truly wonderful people are members of it.

Some months ago, I had an interaction which triggered an anxiety attack. All because I linked this blog in response to someone’s question. Now the situation was resolved and the response that triggered my anxiety was removed and I did get an apology. But anxiety is an arsehole and its good friend depression likes to follow it around like the Big Black Dog metaphor it is known as. I tried snoozing the group for 30 days.

At the end of that 30 days, I’m pretty sure no-one had noticed I had been gone. Within a couple of days a post appeared where someone linked a blog and nothing was said. I felt hurt, as though I had been singled out and made an example of. I’m pretty sure that wasn’t the case, but that’s how it felt. So I snoozed the group again.

The next time the 30 days were up, the first several posts were people venting. I’m ok with people venting and a support group is EXACTLY the place to be doing it. But some of the stories made me cry. I really feel for people who have no support at home or who have a dangerous home-life in one way or another. While it made me even more grateful for my Knight – I realised I wasn’t strong enough emotionally to handle their pain right then.

I can’t specifically remember what happened to make me snooze the group for the third and fourth times. But when that last 30 days was up a few days ago, I didn’t snooze it again. I read some posts, participated in a couple of fun things, but just didn’t feel like I was in a safe place to actually help anyone or express myself. So this morning, I left. If anyone reading is a member of that group, please understand that this is within myself and I don’t blame anyone there.

Around the same time as that initial interaction, I had to have a growth surgically removed. It turned out to be benign and I recovered relatively well from the surgery, but extra stress never helps anyone, and especially not when you have a FibroTroll hanging around.

AND then, I had a stall at a market (my mother helps me run a little hand-crafting business) and didn’t sell a damn thing. It was incredibly disheartening to spend a large amount of time and energy to hold a market stall and end up with negative money.

So the Black Dog made himself comfortable. And I stopped doing the things that help. I stopped mediating, I hardly did any yoga, I stopped writing. I can’t even tell you what I did for most of May or June, I can’t remember achieving a single thing.

But my psychologist Julie (http://psychologyconsultants.com.au/) helped me get back on track. And slowly but surely, I’m getting back on top of things.

But the big catalyst for starting to write here again was a letter from my cousin. This particular cousin lives in Denmark and he is one of the handful of cousins that I’ve met more than once! I first met him when I was 15, and again in my mid-20’s in Australia, then once in Denmark when the Knight and I were on our honeymoon, and then again 2 years ago in Oz again. It’s funny to find that even though you’ve grown up almost literally on opposite sides of the globe (New Zealand is the antipodal point of Denmark – so pretty damn close!), that you can just simply get along with, and have the same humour and interests as a cousin you’ve hardly met. I know he’s reading this, because he said so in his letter. So Hi! And thank-you for your kind words. they mean more than you could possibly have imagined.

I realised that if my cousin on the opposite side of the world was reading my blog and found it interesting and inspiring, then probably someone else out there might also find it of benefit. So I sat down and started to write. And I was reminded of something that Jen from Healthy Moving said once:

“Failure is not falling down, but staying down.” 

So I haven’t failed at writing my blog. I simply had an unscheduled break, and I’m back at it now.

 

Pacing – household chores

Housework – definitely gets onto the list of most people’s least favourite things to do. I can tell you it’s on mine. But I also like to have a clean house, so it needs to be done.

I’ve mentioned before that my Knight in Tarnished Armour is fantastic. He is my main support person and does so much around the house for the general running of the house and in taking care of me – especially when I’m flaring.

However, it simply isn’t possible for him to work full-time, take care of me, do all of the household chores and have time for his own leisure and self-care. I’m a big believer in self-care and if the Knight gets too run down and sick, then we are both screwed, so giving that up is not an option. So I do what I can.

When I was first diagnosed, I was told I had to learn to pace myself and “stop before I got tired”. Honestly, that was, at the same time, both the most helpful and unhelpful piece of advice I have received in regards to my Fibromyalgia.

It sounds simple right? Quit while you’re ahead, that sort of thing. Except that it’s not. When the FibroTroll can come out of no-where and smack you with his extreme exhaustion club in the space of two minutes from feeling relatively fine, it’s very difficult to know when to stop. Doing nothing at all is not helpful either, because the less you do, the more muscle tone and strength you lose and the more unfit you become, so you get tired faster.

We tried having a cleaner come once a week or a fortnight. That seemed like a great idea, except that they wanted everything to be “tidy” before they started. So I had to pick up the baskets of laundry off the floor, wash and put away all the dishes in the kitchen, put away the random things that accumulate on bathroom sinks, or table tops or – let’s be honest here – any horizontal surface, and generally have the place tidy so they could clean. If I was having a bad run the day/s before, then that would use up all of my energy and some of the next day’s. If the knight had to work late the day before, then he couldn’t do it either. Then I found that their cleaning products gave me headaches – so I had to make them use my own. I also couldn’t relax while they were here. They would have questions, or I would need to move when they were vacuuming or any number of things. Yes, I had a clean house, but I ended up using just as much energy in preparation and tension that it simply wasn’t worth it.

So instead I’ve learnt to pace myself. This was (and still is) difficult to do. I have learned to listen to my body. Little hints, that the FibroTroll is waking up. You would think that pain and exhaustion would be obvious. But when you live with pain and fatigue every single hour of every single day, it can be a bit harder to determine.

For me, dropping things is an early warning sign. If I drop more than one piece of food on the floor while making dinner, it’s a pretty good sign that I need to get the knight to take over. Noise sensitivity and difficultly staying focused are other early signs. Dizziness, difficulty finding words, muscle twitches and shakiness are even bigger indicators that I need to stop. And of course, increased pain and fatigue. It’s best if I stop before any of those later warning signs start to happen. The only way I have been able to do this, is to pace myself or use a timer.

Sometimes I’ll break the chore down into smaller pieces. For example the bathroom. I break it down into: toilet, toilet sink, big sink, bath/shower, mirrors and shelves, and the floor. As I generally do the toilet twice a week,  I can just do one section a day if I need to. The bathroom cleaning products all live in the bathroom, so I can just do a little bit when I need to. Sometimes I can get it all done in a day, broken up. Other times, it takes me all week. It can be frustrating to not have a bathroom that is completely clean in one go, but at least I know that every bit has been cleaned so it’s hygienic.

Not every chore can be broken down into small bits like that. So most of the time I use an actual timer – the oven clock, on my phone or any other timer that counts down. If it’s physical and a task that is likely to take more than 10 mins, then I set a timer. The biggest challenge to this, is to actually STOP when the timer goes off. This is hard to do. I usually don’t feel too bad while I’m doing the task and I just want to get it done. But I have learnt that if I do this, I actually get more done.

I’ll give you an example. We needed to oil our deck. This involved giving it a good scrub, letting it dry and then painting on the decking oil in two coats. Now we have a huge deck. It’s about 8 m x 6 m minus the stairs and a bit where the kitchen juts out. To help you imagine this, our 12 seater table takes up less than half of the space. It also has wooden rails and privacy screening on both the short sides. It was a big job. So the knight and I got to work. I set a timer for 10 minutes and when it went off I lay down for 20. Then I got up again and did 10 more minutes. I did this over the course of the project. When I did, I found that I could do an hour or two of work a day and not trigger a flare. If I tried to do an hour of physical work like that in one go, I would have managed one hour and triggered a flare and been in bed for three days afterwards. I would do a couple of bouts of 10 or 20 minutes each day when the knight was at work and on his days off, he would do a few hours in a row and I would do my 10 minutes on, 20 minutes off routine. We got it done. Could we have done it quicker? Probably. I could have pushed myself and worked through the pain and fatigue and halved the number of days it took us to do it. Then I would have spent a week or more in bed, the knight would have had to do everything else, including coming home at lunch time to make sure I got lunch. For me, this system works.

 

I use it when gardening, cleaning, bulk cooking, sorting paperwork, etc. Basically any chore where I there’s a chance I’ll start and try to just get it all done in one go, I try to remember to set a timer. Sometimes, that timer is super annoying and I want to ignore it and just finish the job I was doing. But at the very least it forces me to be aware. If it goes off and I don’t have much left, I might finish off the job. Or I’ll stand for a moment and really tune into my body. Sometimes, stopping even just for that 10 seconds is enough to realise that the warning signs are there and I was just not feeling them. I have to remember that the pot that needs scrubbing is not that big a deal. Maybe soaking it will mean that in 30 mins it will take half the energy to clean. But pushing might mean that I don’t have the energy to shower myself later. So, I’ve had to learn to stop.

I’ve found a system that mostly works for me, but I’d love to hear what your tips are. Please let me know!

 

Easy, Tasty, Apple Crumble (GAPS, Paleo, Gluten Free)

I’ve been on the GAPS diet for about a year now. And there’s been a few things that I have been missing. I don’t eat dessert very often, but I do like a little sweet treat every now and then. So now that I can have fruit again, I came up with this tasty offering.

It’s everything a good dessert should be – warm, sweet, tasty, a little bit soft and a little bit crunchy. Best of all it’s simple to make and virtually impossible to screw up!

Apple Crumble

Ingredients:

  • 4 apples – granny smith if you want them to hold their shape, any other variety if you don’t care
  • 1/4 cup sultanas (optional)
  • Juice of one small lemon
  • 1 tsp mixed spices – I like cinnamon, cloves and cardamom
  • 1/2 cup nuts – I like a combination of hazelnuts, pecans, and walnuts
  • 1/4 cup coconut flakes (shredded or desiccated will do)
  • 2 tbsp coconut oil (melted if its cold)

Method:

  1. Core and chop apples. Peel them if you want to (I don’t).
  2. Mix apples, sultanas, lemon juice and spices directly in a casserole dish and spread it out fairly evenly.
  3.  Roughly chop the nuts  I use a mortar and pestle, but you could just chop them or pop them in a clean tea towel and bash them with a rolling-pin. Add coconut flakes and coconut oil and mix well. Add some more cinnamon if you like.
  4. Sprinkle the coconut mixture over the top of the apples
  5. Bake in a 180 °C (350°F) oven for 40 mins.

Serve with yogurt, ice cream or coconut cream(if you can have them) or just enjoy as is!

Tip: if you are making this ahead of time, stew the apple mixture in a saucepan first, then you can bake it at a higher temperature for less time!

Pacing – social life

You know you have a chronic illness when: You look back at your past month and realise that the only people you saw outside your family were your team of health professionals.

Now don’t get me wrong, I like my Doctor, Naturopath, Chiropractor and Physiotherapist. But a month where they are the only people I see apart from the Knight and maybe my parents is sad. It unfortunately happens far to often. But trying to have a social life when you have a chronic illness is hard.

Having a good chin wag and a laugh is so good for mental health. It is one of best therapies for depression and reducing stress. But going to a social function will have its toll. The FibroTroll will expect payment and I have had to learn how to reduce the damage.

Over time, I’ve worked out a few things. I can’t do an evening function unless I am in control of what I eat and drink, I don’t stay too long, I can sit down and I am able to do nothing for the next two or three days. This means I don’t do washing, I don’t have someone come for coffee, I don’t read anything that needs a lot of brain power. I need to be able to have a bath in Epsom salts, have a session in my HBO2 chamber, have easy to prepare or ready-made nutritious food that at the moment is GAPS approved. My priority has to be me. If it’s not, then I can be sure that the FibroTroll will invite the family over and I’ll end up with enforced rest for days or weeks because I can’t get out of bed.

When I have an invitation to anything, whether it’s a night function, or a birthday catch-up in the park, I have to pace myself. I decide if it is a priority. (I’ve got pretty awesome friends, so the vast majority of the time, then the invite is a priority.) This then means that nothing is scheduled for the day before or after. Depending on the time of day, I then schedule my bath and HBO2 time. I work out if I need to bring a meal, and what the other meals will be around the function. I work out what I will wear – checking if the venue will be air-conditioned or outside in the sun. I allow for travel time (even being a passenger is not rest – especially when your vestibular system is playing up). I decide which bag/s to bring based on how many layers of clothing I need and/or my own food. Finally, I battle with my ego about bringing my cane. Nowadays, I need it most of the time, especially when there’s a chance of stairs or uneven ground.

There is a common misconception that pacing yourself for a social function is just a matter of sitting down while you are there and having a nap when you get home. While those things certainly help, there is far more to it.

To help you out, I’ve made up an imaginary invitation to brunch at 10:30 am on a Sunday.

The week leading up to Sunday:

  • Call cafe/restaurant and see if they can cater for me
  • Cook extra meals during the week so there’s some food in the freezer
  • Order fruit and vegetable delivery or write shopping list for the Knight to do during the week or on Saturday
  • Sort out which loads of washing are the most important, and which can wait another week
  • Ensure any appointments are no later than Thursday (with the exception of my chiropractor, I find most appointments energy draining for a day or two afterwards)
  • Have at least 3 Epsom salt baths, and  5 HBO2 sessions
  • Ensure adequate sleep
  • Don’t introduce any new foods or re-try suspect foods
  • Choose outfit – check BOM (Bureau Of Meteorology) for weather predictions
  • Shave legs and underarms if outfit needs it

Saturday:

  • Let chickens out and feed them, watch their silly antics for a little while
  • Vegetable juice
  • Yoga/Tai Chi
  • Make and eat breakfast (Knight will probably make breakfast)
  • HBO2 session
  • Knight makes lunch
  • Keep energy usage low – both physical and mental
  • Make sure not to sit too long without stretching and change activities (TV, read, crochet etc.)
  • Have a soak in Epsom salt bath and wash hair
  • Knight makes dinner or use one of pre-made meals from freezer
  • Early night

Sunday:

  • Hope like hell that the FibroTroll is playing nice – despite all the prep, sometimes the Troll is just an arsehole.
  • Wake up the Knight in tarnished armour to let the chickens out and give them breakfast
  • Vegetable juice
  • Yoga/Tai Chi
  • Eat something light if the cafe can cater – because waiting until 10:30 or 11 am for food is not going to make the FibroTroll happy, a full meal if not. The fantastic Knight will make this while I’m doing my Yoga.
  • Wash and study face – good day and casual affair – no make-up because it uses energy.  Less good day – on goes the make-up so that people say “you’re looking well” instead of “are you sure you’re up for this?” Crap day – no point, because I’m not going to make it down the stairs let alone to brunch 🙁
  • Get dressed – now lets say its summer, so it’s hot outside and the sun is going to be coming through the window on the way there – too hot for jeans, but the cafe will be air-conditioned and due to my poor thermoregulation, within a few short minutes, I will start to freeze and then my pain levels will sky-rocket. So a long light dress and I pack 3/4 length leggings and a cardigan in my bag ( on the plus side – don’t have to shave my legs!). Enclosed flat shoes so my toes don’t get cold
  • Put band-aids on ankles and anywhere else the shoes might rub even if I’ve worn them in, in case the Troll decides to be the aforementioned arsehole and give me blisters anyway.
  • Pack something to eat if the cafe couldn’t cater (and make sure I have snacks anyway because sometimes they are wrong).
  • The Knight drives to venue.
  • Enjoy myself at function, hope that the noise isn’t too loud, that the temperature is ok and that they don’t feed me something that triggers my IBS.
  • Keep an eye on the time – super hard when I’m having fun.
  • Dance around the “How are you?” question.
  • TRY to leave before I hit the wall. – This is possibly THE hardest thing to learn to do as it’s really hard to predict. Loud noise and being too cold will significantly reduce the amount of time I can be anywhere.
  • Knight drives home.
  • Depending on what I could eat, I may need lunch.
  • Knight prepares the HBO2 chamber and I hop in for at least 90 mins. I do something that doesn’t require too much thinking and no noise (probably a game on my phone or crochet.)
  • Have a bath with Epsom salts.
  • Knight makes dinner or we have a pre-made meal from the freezer.
  • Maybe watch TV.
  • Early night.

Monday (and possibly Tuesday): 

  • Knight gets up to feed chickens, make juice, make breakfast and take something out of the freezer for lunch and dinner and prepare the HBO2 chamber.
  • Sit
  • Lie down
  • HBO2 session.
  • Hopefully make my own lunch and I won’t have to make the knight come home to prepare lunch.
  • Sit
  • Make sure not to sit too long without stretching and change activities often (TV, read, crochet etc.)
  • If not too bad have a bath – otherwise wait for knight to come home.
  • Put pre-made meal in the oven.
  • Lie down
  • Sit
  • Maybe feel up for watching TV with the knight.
  • Try very hard not to feel guilty (this is a work in progress.)

If I don’t do this, I’ll probably manage for a day or two. I’ll do some housework, I’ll hang out with the chickens, study, research etc. BUT I have learnt from experience that if I don’t take the day or two I need to recover then I’ll almost always have a flare.

And that will mean lying in bed most of the day, needing help to and from the bathroom, taking the maximum amount of medication that I can and taking several days to a week or more to recover.

If I am disciplined and do follow the plan, then by Wednesday I should be back to normal energy and pain levels. Having one or two days where I only take care of me, ultimately works out better than having a week where I can’t even do that.

For people who work or have children or have dogs that need walking or any other commitments recovery is even harder.

Planning rest time and meal planning is your friend. Try to have nutritious meals in the freezer and try to take it as easy as possible. Can a load of washing wait an extra day or two? Can a friend walk the dog? Can you take 20 mins to soak your feet in Epsom salts? Recovery from any extra stress – including fun stress – takes longer if you don’t take it easy.

Pacing – it should be a four letter word.

Hands up FibroWarriors! How many times have you been told that you just need to learn to pace yourself? How many times have you told yourself that? And how many times have you failed miserably only to trigger a flare?

If you are like me, the answer to all of those questions is LOTS of times! While I am getting much better at it, pacing is an art form I have yet to perfect.

Before my diagnosis, I was quite firmly in the “just push through and get it done” mentality. Which is fine when you are otherwise healthy and getting the washing/dishes/vacuuming/painting (insert chosen activity) is your priority. But it just doesn’t work for someone with Fibromyalgia. I hated doing the dishes and not washing everything. Vacuuming and mopping seemed pointless unless I did the whole house. Going out for lunch didn’t mean that the housework shouldn’t get done.

Now, I’ve had to learn a very different approach to everything I do.

Gone are the days when I do a load or two of washing on a Saturday morning, do some grocery shopping and then head off to dinner with a friend, knowing that I’ve got a Sunday lunch catch-up the next day. For a “normie” (person without a chronic illness) that doesn’t sound like a particularly busy weekend. When you have to deal with the FibroTroll – that is a massive weekend. Realistically, I would have to choose between the two engagements. And I certainly wouldn’t be doing any washing or grocery shopping.

Learning to pace oneself is not just about reducing a project down into manageable chunks, it’s about reducing your whole life into manageable chunks.

You have to work out your priorities for everything. Every. Single. Thing.

Because the FibroTroll affects EVERY aspect of life, this post has ended up a whole lot longer than I expected. So I’m going to break it up into several posts.

The things that I have had to give up or change the way I do fall into four basic categories:

Work: One of hardest things I had to do was give up my job as a vet. I realised that I wasn’t doing the right thing by myself, by colleagues or my patients. My health had to come first. It was hard, and this isn’t an option for a lot of people. I will write more on this topic soon. To be honest, I am still not okay with it and I’m planning on focusing on this with my psychologist at my next appointment.

Social life: I’ve written about this a few times because it’s one of the hardest things in life to completely give up. Even introverts (with exceptions) need some human contact that is enjoyable. It’s often one of the first things that FibroWarriors start saying no too, but one of the most important to maintain to some extent. Humans are, by and large, social creatures. Without human interaction the risks of depression increase and the sense of isolation that this disease already imposes becomes worse. But the FibroTroll will expect his toll to be paid, so I have had to learn how to pace things when it comes to my social life.

Housework: Most people’s least favourite thing to do. But as I like having a clean house, clean clothes and clean dishes to eat from, housework has to be done. The Knight is amazing, but he cannot physically or mentally handle doing everything that need to be done to run a household AND also work to get money so that we have a house that needs cleaning, clothes that need washing and food to make the dishes dirty.

Adult responsibilities: Sometimes this vies with housework for least favourite things to do. It includes paying bills, doing tax, organising household maintenance and other such fun things that we never had to think about as children. But again, as I like to have electricity and running water, these things have to be done.

I know I’ve barely touched the topic of pacing, but if you stay tuned to the following posts, I will go into a lot more detail of the things I’ve found that work for me.

I got a bit carried away and forgot to set a timer for myself when writing this, so I’m going to be a bit of a zombie later. So no more thinking or writing today. I’ll let the suspense build with dramatic music until my next post (but not too loud or with too much base!)