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.

Coffee Alternatives

I love coffee! Those magical beans that when you roast them, grind them and pour hot water through them, transforms that water into a delicious, dark, bitter elixir of life. Add some frothy milk and I’m in heaven.

Unfortunately coffee is not my friend. It gives me fake energy. I think I can do more than I can and it drains me. I use it medicinally – if I have a headache that will not shift with anything else, coffee usually works. I also drink it before a function like a wedding. I know I’m going to be stuffed anyway, so I might as well give myself the chance to fake being well! But I cannot have it everyday – or even every week. I very quickly get addicted, I need more and more of it to be effective and it interferes with my sleep and all my other fibro symptoms get worse. Quality sleep is difficult to get anyway – coffee just makes it worse. I think maybe, it feeds the Troll.

So what so I do? There’s a few other hot drinks that replace my morning coffee. I’ll have herbal teas, or a ginger and honey infusion. At least once a day I’ll have a turmeric latte (I will dedicate an entire blog post to this soon.) The one drink I’ve found that comes the closest to satisfying the coffee itch is Crio Brü. I alluded to this in my post about instant kettles. 

So what is Crio Brü?

I’m glad you asked! Crio Brü is a drink made from 100% cocoa beans. They are roasted and ground and you prepare them in a similar way to coffee. I make mine in this cup.

crio bru But you can use a French press or just boil it on the stove and sieve out the grounds.

It’s delicious hot or cold. I take it without milk or sugar, although you can add either or both if you wish. I will sometimes add some cinnamon or cloves, a mint leaf, some vanilla, or a strip of orange peel depending on my mood. It’s rich, dark and emotionally satisfying. Crio Brü does contain theobromine which is similar to caffeine, but negligible amounts of actual caffeine. Theobromine is toxic to dogs – so make sure you keep it well away from them!

I am a self confessed chocolate addict. I have been known to eat an entire family sized block of dark chocolate in one day. While I don’t do this anymore, I do still like my chocolate. I have found that not only does Crio Brü replace my desperate longing for coffee, it also satisfies my chocolate cravings!

If you are looking replace coffee, or need a sugar and fat free alternative to chocolate, then I strongly recommend trying Crio Brü!

I get mine from here. Cheers!

Instant Hot Water

I’m going to talk about one of the things that make my life a little easier. First thing in the morning – regardless of how good or bad a day it is, I cannot lift a hot kettle safely. I simply do not have the strength and muscle co-ordination to do so. That means no coffee, tea, ginger drink or turmeric latte! Not even a Crio Brü! But don’t panic dear friends, my fantastic knight in tarnished armour found a solution for me.

It is an instant hot water kettle. We actually have two different ones, and we can’t quite decide which one we like more. One of them is from Aldi (as many of our favourite things are!). And the other was found on E-bay.

What’s so great about an instant hot water kettle?

Firstly, they have a reservoir of water. One holds 2 litres of water, the other holds 3 litres. This means I can fill it up (or my knight does) and let it sit without having to check it all the time.

Second, it only boils the amount of water you need at a time. This saves time and electricity. If you only need 200-250ml of water for a cup, why boil a whole litre?

And thirdly, and most importantly for me, I don’t have to pick it up to pour into my cup. I just pop my cup underneath the nozzle, press the button (or turn the knob) and boiled water will come out directly into my cup. No fuss, no risk of spilling boiling water on myself or burning my hand by touching the outside with my other hand. It’s fantastic.

Ambiano Kettle from Aldi.

This is the Aldi one. It holds 2 litres of water in the reservoir. At the push of a button it boils 1 cup of water and then dispenses 200 or 250ml of water (depending on which side the switch is pointing at). It goes straight into your cup and if it’s getting a little too full you can stop it quickly and easily by pushing the button.

 

 

 

“Decent” brand kettle from E-bay.

 

And this is the one my knight found on E-bay. We find it amusing that the brand is called “Decent”. It is decent, but doesn’t really sell itself very well! The reservoir on this one holds 3 litres and also has the option of choosing different temperatures. Which is great for green tea, or if you just don’t want to wait until your cuppa cools down enough to drink. This disadvantage is you do have to watch it closely and turn it off BEFORE your cup is full, as it continues to pour out a little water after you turn it off.

 

On the whole they are both great. If you don’t want to buy one from E-bay, then keep an eye on the Aldi catalogues, as they often repeat their popular items and I’m sure they’ll come up again. Otherwise, you can find instant hot water kettles here.  This is not an affiliate link. I’m just being helpful!

Terry the Dragon

 

This is Terry.

Terry is my cranky old kitty. He is 16 years and 10 months old. He bites people if they touch his belly, but he loves to show it off. I have to gas him with anaesthetic gas in order to get blood out of him, or really do anything invasive. (It’s ok, I used to be a vet, before the Fibro Troll took that away.)  He doesn’t like cuddles, but he likes to hang out next to you, or lean on your leg while you are sleeping. He is aloof, contrary and he might have been a dragon in a past life and I love him to bits.

He’s got hyperthyroidism (overactive thyroid gland) and his kidneys are failing and he needs medication twice a day and special food and has worked out a new level of demanding. He knows he gets tin food with all his medications, so he refuses to eat his regular dry food. He also expects you to sit with him and feed him little bits of food until he is full. He is underweight, so I can’t just use tough love and walk away. But that’s ok. He is my fur baby and I doubt he’ll make it to 17. So he gets (almost) whatever he wants.

He likes helping me sew. And by helping, I mean getting in the way while I try to cut fabric and expecting pats.

 

 

 

And stealing my yoga mat. 

He does not like us to go away.

 

 

 

 

 

But he will happily sit in a masking tape square on the floor or in a box.

 

 

 

 

 

 

 

 

And he takes a mean selfie.

 

 

 

My Cranky old man only worked out how good laps are to sit on in the last few years. He only does it when it’s cold, and only if you have a blanket or dressing gown over your legs. It’s one of the few things I love about winter.

He hated our dogs, and only just tolerated our other cat, so when he became an only fur-child 2 years ago, we decided not to get any more pets. We did get the aquaponics fish pond (I’ll write about that another day) but he just thinks that it is an oversized water bowl for him on the deck.

And speaking of my endearing little dragon. He just walked past, gave me a very pointed look and headed outside to the deck. The deck is the only outside he gets these days, so I might head out and join him for some sunshine.

It must be nice…

One of the many frustrating things about Fibromyalgia is the lack of fun. I often have people tell me that it “must be nice” to have the time for a 2 hour bath or to read a book all day.

What they don’t understand is that those 2 hours in the bath, they are because it hurts too much to even lie in bed. So sitting in a nice warm bath where the water supports your body without too much pressure on it, might be the only relief you get that day. Epsom salts will help make that 2 hour bath give relief for a few hours afterwards as well.

Reading that book? Yes, I admit, I enjoy reading. But sometimes I do it to hide from the pain and fatigue that is preventing me from doing other things.

The Fibro Troll has taken a lot of thing from me. I had to stop doing the job I love. I spent my whole life working towards that goal, I spent 5 years at university, worked two jobs in my final year and somehow still managed to have a social life. I worked hard in that job, did all the normal things people do – housework, social life, etc.  Then bam! The Fibro Troll invaded my life and took all that away.

Now I have to make sure that there’s only one thing scheduled for a weekend. If I go to a BBQ or a birthday party I have to plan ahead. I usually bring my own food, I have to make sure I rest up before hand for a day or two and make sure I sit down a lot.

If I go to a wedding – and I love weddings – I know that the next week will be spent in bed or on the couch or yes, I will spend 2 hours in the bath or read a book. I won’t do housework that week. I’ll be lucky if I can cook dinner. So my darling knight has to take up the slack – again.

So next time you tell a person who is chronically ill, that it “must be nice to have time to relax” they’re probably thinking – “it must be nice to have the energy to clean your own house.”

 

Gut Health, GAPS and Fibromyalgia

One of the problems that is common in people with Fibromyalgia is gut issues.

In my case, multiple food intolerances and Irritable Bowel Syndrome. I’m not allergic to any foods, so I’ve been told I’m “just fussy” but that really isn’t the case. When certain foods cause your waist measurement to increase by over 10cm in a few hours (and the subsequent pain associated with that), or causes vomiting and diarrhoea, it’s more than being “just fussy”.

There is an increasing awareness of gut health in the general community. There is also an increasing body of evidence that many chronic health conditions may be linked to gut health. I am hopeful that Fibromyalgia is one of them.

As part of my Fibro journey I’ve been on multiple elimination diets, low salicylate diets, and low histamine diets just to name a few.
It’s been difficult and exasperating and disappointing. Trying time and time again to find a diet that didn’t cause unwanted side effects. A diet that resolved or even reduced the number of IBS attacks while still giving me the nutrition my body needs.

Discovering more and more intolerances and still having pain and bloating was heartbreaking. At times, I would just throw up my hands and say “F*** it!” and eat a whole packet of chips and some chocolate and have a cocktail or a glass of wine. I almost always regretted it. I was considering buying shares in buscopan, and I occasionally missed appointments or social events because I just couldn’t be too far from a toilet.

In April this year I started GAPS. The Gut and Psychology Syndrome diet was created by Dr Natasha Campbell-McBride originally for autistic children. I’ll talk a lot about GAPS as so far it seems to be working! I’ve been able to reintroduce eggs – something I haven’t been able to eat for years. I’ve introduced butter, yoghurt, milk kefir and some cheeses, without any unwanted side effects.

The success I’ve had with my GAPS journey makes me hopeful that my gut issues will one day be a thing of the past. In the meantime – lots of experimenting with GAPS legal foods to create tasty new recipes.

About The Troll

In mid-2012, I was diagnosed with Fibromyalgia.

It didn’t come as a big surprise as I had been unwell for some time. I was told that some people get better and if they do it is generally in 2-5 years. I was quite sure I would be one of those that got better. I cut back on work, I tried multiple medications and a few months later stopped work completely. 2 years went by. I spent much of that dealing with income protection insurance and dealing with the side effects of medications. 3 years went by, I kept trying new things, more tests, a new specialist, new health professionals, but I just kept getting worse. 4 years went by, same shit, probably even the same bucket.

It has now been 5 years since I was diagnosed. I’ve been through many of the stages of grief. Some of them multiple times. I am slowly coming to terms with the possibility that I’m not “one of those”. I may not ever be well enough to return to the job I love, or to go out drinking and singing (I use the term singing very loosely) karaoke until midnight or beyond. But maybe I can find another, different, just as meaningful existence. 

I’ve found some things that work for me. They either help me feel better, through reducing specific symptoms, increasing energy, or helping to make day-to-day tasks a little easier. I’ll share the things I’ve already tried. I’ll let you know how much they helped and in what way. I’ll try new things, and let you know how they go, and I’ll let you know what things make me worse.

I hope you’ll join me in this journey and if, in the years to come, I do become “one of those” who gets better, then I’ll host a karaoke party and everyone will be invited!