Abilify and M.E. Part Three: Down and Up

 

The second blog in this series I published in September 2022, but I had actually written it in July 2022 and so it wasn't reflective of how I had been for the whole of August and into September. I said in Abilify and M.E. Part Two: Moving forward:

“I am still pacing and being overly careful. But life is for living and after 15 years of being ill, I think I deserve to have some fun. I could relapse from doing absolutely nothing, so I want to try. I want to try and spend August doing some fun things. I want to make some memories, see my amazing friends and go on adventures, even if that is just going on my mobility scooter”.

 

Sadly I misjudged my newfound energy levels and recovery time. I pushed too hard and after a few days out with friends and family, I came crashing down. I was so unwell,, all my symptoms worsened again and it was very bleak. I was so upset. I had my memories from what I had managed at the end of July and the beginning of August but they seemed fleeting. 

 

I've crashed many many times and each time has caused me to relapse long-term and not recover to where I had been before. However, after I had been stuck in this relapse for several weeks my symptoms had at least balanced out and were similar each day so I decided to up the dose of Abilify to 1.05ml (from 1ml) and after the initial side effects, which I talk about in my first blog post about Abilify, I started to slowly make some progress again and by October I had regained the strength and health that I had achieved before my August crash. This was simply astounding to me. I had never experienced a good recovery from a crash and after nearly 16 years of chronic illness, I could safely say this was not a fluke but one hundred per cent down to the increase of Abilify.

It did remind me of a very powerful lesson. Not to overreach or overstretch myself just because I can. The crash was truly miserable and very scary, and I am not willing to risk it again. Every time I feel like pushing myself just that little bit more to do something I remind myself of what happened and what could happen, just because I got out of it last time with the help of the medication is no guarantee it will work again.

Getting Away

So in the spirit of not pushing things but still trying to enjoy my new found decrease in symptoms I endeavored to move onwards and upwards to better things. I managed a week's holiday in Cornwall with my mum to visit my brother and his girlfriend. I even tried out some great allergy food options which I have written about for this website Cornish Vybes. I was careful to rest before, during and after and although it was a stretch, I remembered not to push once I was starting to overly suffer and I avoided any kind of relapse.

If you would like to see my trip to Cornwall I made a Vlog all about it:

Two Great Days

In November I had another two key moments which were more small markers of improvement for me:

1. I had a day where I felt better than I had done before an operation I had had in August 2021.The operation had knocked me into a bad relapse that I had gotten stuck in before starting on Abilify
2. The second key moment was, with a little help, I used my bread machine to make some Gluten-free bread. I had not been able to do for about 16 months. In 2021, for about 3 months, I had been able to use my bread machine once a week without it causing me too much exacerbation of symptoms. So to be able to do this again was cause for celebration. 

These two things were big markers for me to indicate that I had made a sustained improvement on the Abilify. I was incredibly happy with my progress, sure other people on the drug had made faster improvements but equally there was no guarantee that this medication would of worked at all. I have been on so many medicines over the years that we had high hopes for and none of them had made such a significant difference, even the improvements I had with the FMT treatment had been much less compared to Abilify. This post takes us up to the beginning of November and I plan on writing part four to document my progress from November 2022 to April 2023! Spoiler alert- there is more good news to come!

 

Abilify and M.E. Part Two: Moving Forward

The last blog left off in a place of hope and positivity. The initial benefits were small but significant to me. However, I have tried many medications that have made small improvements to my quality of life but have not progressed much further, so it's always an emotional roller coaster trying a new medication, especially one that comes with the potential of huge recovery but also only small improvements.

July Update

I am pleased to be reporting that alongside easing my daily symptoms, and apparently reducing my post-exertional malaise and delayed post-exertional malaise, the Abilify allowed me to go on a day out with my friend. To explain what a momentous occasion this was I have to take you back two and a bit years ago first. In 2019, it was the first year that it was easy to apply for wheelchair tickets for the Wimbledon Tennis Championships. So I applied, hoping that if I won tickets, I would have made some health improvements by July 2020. Sadly my health continued to decline and when I found out I had got the tickets I was pretty sure I would be unable to attend as I had become completely housebound. Then covid struck and luckily for me the tickets were re-issued for July 2022! When I was offered them again in February 2022 I still was not sure if I would make it but I bought them knowing I could return them if I needed to. Fast forward to May 2022, I tentatively asked one of my best friends if she would like to go with me. I was still at the beginning of the Abilify and was a bit all over the place! Slowly but surely, as you saw in my last blog, I started to feel a bit stronger and by the time I got to the day of my tickets, I had rested up in preparation and felt like the Abilify was working well enough to let me go. And so, I did!

 

I had tickets to Court One and saw all three matches. It was thrilling. I even managed to feel present and deal with all the flares of my symptoms in a fairly calm manner. Now, I cannot say there were no serious consequences. I could barely speak for several days and had to eat lying down, amongst other things like needing help to get to the bathroom! But the amazing thing was my worst day hit me on day 2. Day 3 was as bad, but NOT worse! Day 3 is usually when the delayed PEM hits the worst. Then from there every two days I progressively got better and exactly two weeks later I had recovered. To give you some context this was incredible because usually a day like Wimbledon would have taken a full 4 weeks to recover from and that had been the status quo for years! This recovery period is unheard of and I am still on a high from it.

 

But what happened next I hear you ask? Was that a fluke, can you repeat it?

Well, no, I couldn't then repeat such a long intensive day out just because I was fully recovered. I know from experience that boom and bust must be rarely attempted, and although my body had coped better than expected (I had laid aside 4 weeks to recover just in case), I needed to now see if I could build up my activity levels slowly after some rest time. The thing I did not expect was my body continued to feel a little bit better and 3 weeks after my day out I felt better than before I went. Enough that for a few days in a row I could lie in my chair in my room for a little while in the afternoon.

I call this indoor sunbathing!

 

After a couple of days I found I could also have my blind up a while too whilst I lay in my chair.

 

Instagram

These small 'wins' like lying in my chair and having the blind open mean more to me than my big day out. This is because they show real progress, adding these things into my weekly routine without suffering huge payback and having to recover is a true mark of the improvement I feel on Abilify. Five months in, I probably could not hope for a better outcome. So far, so good.

 

A small adventure

Well, after being on Abilify for such a long time and not pushing myself at all (apart from Wimbledon) and trialling sitting in my chair, my body felt strong enough to try my mobility scooter out again. Although I had tentatively planned to do it, I was only going to do it if I felt I could and well I did. My dad came over and we decided to take a trip to the local pub for lunch as I had a week and a half without any in-person, zoom or phone appointments. I could prioritize my social life and do something spontaneous for once.

Here are some details of my little adventure

💎Time on scooter: 10-minute round trip
💎Walking: A few steps with my sticks from my scooter to the outside table as there was no drop curb to the marquee area of the local pub. My hips suffered a lot, but only took a couple of days for the pain to subside (which is amazing).
💎Time at Pub: 2 hours
💎Recovery Time: On day 3 I was starting to recover!
💎Did I enjoy it: Loved it. I mostly loved the freedom of being well enough to go on my scooter and not be driven or pushed in my wheelchair.
💎Could I start to do more like this: Yes, absolutely, I hope so!

The amazing thing is I even managed to make a short Vlog about my adventures in July.

If you would like to check it out, here is my Youtube channel.

 

What now?

I have been weighing up how slowly I should build my activity. It has been 5 months, and for 4 of those months, I did NOT increase my activity levels even though my symptoms had eased. I had a year and a half of being so ill that I was completely housebound and then another 11 months of only leaving the house for an operation and subsequent appointments. Is there a risk of the Abilify stopping working in the future? By all accounts, yes, but I have not been one of the people that pushed and then ended up crashing as soon as felt some relief. I am still pacing and being overly careful. But life is for living and after 15 years of being ill, I think I deserve to have some fun. I could relapse from doing absolutely nothing, so I want to try. I want to try and spend August doing some fun things. I want to make some memories, see my amazing friends and go on adventures, even if that is just going on my mobility scooter. It is so hard to accept that I deserve this. I am so hard on myself, but I am learning to ignore that inner critic, and let myself do lovely things rather than using precious energy reserves on countless appointments. I will still have home appointments, phone appointments and video appointments for next month but I refuse to go too far away for draining in-person appointments for a while.

 

The dosage

I have stuck at 1ml for over 60 days. Not because I think this is my sweet spot but because I wanted to first make sure I was not suffering from side effects for Wimbledon and then I need time to recover. Then there have been some other things going on that have meant it has not been appropriate to go up to 1.05ml. I am doing well on 1ml but I feel soon I will start to build the dose again just to see what happens.

Tips

In my first blog about Abilify, I had a section on tips. I stand by all of them but I have two more:

💎 Buy your Abilify from Dickson Chemist. After being ripped off by boots at their self-proclaimed competitive price of £130, I sent my next private prescription off to Dickson Chemist and I got TWO BOTTLES for £23.61! Make sure you send it by recorded or signed for delivery as my first prescription got lost in the post!

💎 Spread the dosing out even further, this is a marathon, not a sprint and taxing your body with constant side effects too close together is not going to help your recovery!

My very first Vlog

This is a really quick blog post to let all my lovely readers know I have started a Vlog.

It is uploaded onto YouTube onto my channel Creating Rebeccah! I would be so grateful if you could watch it. If you enjoy it please share it, like and subscribe! It is a montlhy Vlog and follows my adventures from July 2022.

 

 

Abilify and M.E. Part One: The Beginning

I am going to start this blog with a spoiler! I am still trialing this medication and building up the dosage but I can confirm I have seen some improvements, which I have talked about it more detail further down this blog

What is Abilify?

• 💙 Abilify is the trade name for Aripiprazole is usually used as an antipsychotic drug and sometimes used to treat irritability linked with autism.
• 💙 Abilify affects the levels of dopamine and serotonin transmitters in the brain and nervous system.
• 💙 It is thought that low doses of Abilify has a pharmacological effect on brain chemical transmitters to enhance dopamine production. and that this could have a beneficial effect in ME/CFS. There is no clinical trials or large scale scientific evidence at present to support this theory in ME/CFS.
• 💙 There was retrospective Stanford study which analysed the symptoms of 101 patients before and after using a low dose of Abilify. The trial was not placebo-controlled, it cannot be used as clinical evidence to tell how effective Abilify is in M.E. However, the results were promising and could provide the basis for a more rigorous trial as 75% of patients reported they experienced :
• - less fatigue
• - less brain fog 
• - improved PEM 
• - improved sleep 
• 💙 Abilify is the drug that allowed Whitney Dafoe, one of the most well known and severely affected M.E. patients, to communicate for the first time in years.
  

What my doctor told me?

It was suggested to me that I take 0.1ml every day and more up by 0.1ml every 5 - 7 days. The maximum dose I could take is 2ml. However, lots of patients foundnd their sweet spot before hitting 2 ml, so to stick at the dose that works best for me, everyone is different. He found that in his patients that had trialed it two thirds had seen improvements and out of that half of that figure had made significant improvements (so 33.3% of patients had gone on to have huge changes in their quality of lives and activity levels). One third of his patients had made no noticeable improvements but no-one had found it made their M.E. worse.

How I am trialing it?

I suffered some side effects for about 5 - 8 days every time I moved up the dose by 0.1ml. This was initial advice from my consultant. The aim is to build up to a maximum dose of 2ml, but there is a possibility that my ideal dose, or sweet spot, is lower. However, although the side effects were manageable and faded after several days, they were very disruptive and not that fun, so I decided to try moving up by  just 0.05ml a time the side effects became much reduced and easier to live with.

I tend to move the dose up approximately every 10 - 20 days depending on my reaction and how I feel generally with my health and what else is going on. By day 70 (ish) I realised it as much better to move up much slower. So decided to go to a schedule of at least 20 days depending on how I felt.

At the time of writing this I am at day 100 and have been on 0.9ml for 11 days. Last night I still had some small side effects so I am going to wait many more days before moving up to 1ml! Sometimes the side effects come and go with a day or two in between, so if this happens I find it best to keep on each dosage nearer the 20 day mark just to make sure my body has adjusted.

As this is a fairly new way to try and treat M.E./CFS I was nervous about trying this without having access to other patient stories or clinical trials. However after quite a lot of internet searching I found a great group I found on Facebook called Abilify for ME/CFS that is full of stories and advice. The biggest takeaway from the group I learned was that do everything slowly and that moving the dose up every 15-20 days rather than 7-10 days was what most people found beneficial too. I really wish I had found the forum to read thoroughly before starting on Abilify. I urge anyone to do the same as it is really helpful in helping you find the right treatment plan. These are the tips I found on the group that I wish I had read before starting:

🔵 Do NOT rush it

🔵 Increase the dose slowly 

🔵 Increase the amount in very small increments

🔵 Keep baseline activity at usual levels for about 3 months

🔵 If you need to take it every other day, or every few days, because you struggle with the side effects that is perfectly fine, it has a long half life

The overall experience from the group suggested how incredibly important it was to heed this advice even if I felt better before this time. That is the advice because people who have felt an increase in energy before 3 months have pushed it too far and have ended up crashing. These people have had to start building their dosages up slowly all over again. Dr Bonilla from Stanford University has advised his patients that the people that get the best outcome are those who keep their baseline activity the same for at least 3 months when starting the Abilify. I stuck to this advice.

Side Effects

🌀 Agitation
🌀 Bad/weird dreams 

🌀 Extra sleepy
🌀 Heightened anxiety
🌀 Headaches
🌀 Heightened adrenaline making me feel jittery and overly-energised
🌀 Stomach ache

🌀 Nausea
🌀 A small weight gain  (but monitoring that, it seems to be a big problem on the Facebook group for people)

These side effects were worse at the beginning when I was increasing by 0.1ml at a time. However, when I switched to 0.05ml increases they were much reduced and much more manageable.  

Benefits

I can confirm that it is making a difference. I have definitely felt some positive improvements which I have listed below:

🔹Graduated improvement in general energy

🔹Almost immediate improvement with my brain fog, concentration and mental clarity

🔹Improved sound sensitivity (found I can listen to music much more easily)

 🔹Improved delayed PEM. I have found that after big activities, such as appointments, the worst PEM is kicking in on day 2 rather than my usual day 3 and the PEM is not quite as bad as it used to be. In other words day 2 is my worst day and my body starts to level out and recover on days 3 and 4. This has not happened for the majority of my illness.

🔹General feeling a bit more “weller“. I feel a difference in my body, it feels different at almost a cellular level (if its possible to feel that!)

 🔹Small improvement in sleep quality

🔹A lot of basic things I do in my day, like brushing my teeth, are just a little bit easier! In fact, I usually cannot brush my teeth more than once a day but recently I have been brushing them twice several days a week

My Top Tips 

1. 🔵 Join the Abilify for ME/CFS Facebook group. They are very friendly and there is lots of helpful information available.
2. 🔵 Shop around for the best priced Abilify. I found that the group advised to send my private prescription to Dickson Chemist as it is much cheaper, in the region of £30 for some people, where as my local chemist was £150! I will be sending my next prescription to Dickson Chemist!
   
3. 🔵 Keep a diary or symptoms and change. It is easier to track and work out the correct dose and time frame best suited to you before you modify your dosage.
4. 🔵 Leave at least 20 days between dose changes and move up by 0.05ml at a time!
   

A Note Of Hope

A Note of Hope was created from a community of wonderful women who are chronically ill. Ellie, got us all together and for the past couple of years we have been supporting each other. Now, Ellie has created an Instagram account @a.note.of.hope as a supportive place for people with chronic illnesses to connect with each other through hope, shared experiences and to develop friendships.

I volunteered my story to be added to the Instagram account in its first month. If you would like to read my story and how it relates to hope please check it out here. There are multiple other stories on the page too and more will be added in the following months. If you would like to share your story please DM @a.note.of.hope and if you would like some support and hope in your life please give the account a follow. It will bring you great joy. Ellie is working hard to make it a hopeful place with all sorts of content. More projects are underway and the first has already launched which is a monthly book club run by Jess which you can join by simply asking to be added to the book group chat on Instagram. 

Ellie is incredibly passionate and motivated by this project and developing community and I think her words below sum up what A Note Of Hope is all about

"It is my hope for this project to become a safe space for people who are in the position I was 7 years ago…focusing on building friendships and promoting positivity when possible. I want to share stories that show not only peoples struggles but their passions, hobbies, interests…everything that keeps them going through the hard times, with the goal to inspire and give others hope. We are so much more than just our health." (Ellie, 2022)

How I write my blog with extreme fatigue, brainfog and dyslexia!

Why do I write my blog?
I really struggle with writing because of having dyslexia, constant brain fog, extreme fatigue. Also, it doesn’t bring me that much pleasure, so it may seem odd to have paid for domain and a beautifully designed blog especially when I don’t publish many posts. However, having M.E. has made me often feel like I have lost my value or my voice. The restrictions of my condition means that expressing my thoughts is often not possible and I find this difficult to cope with. My blog allows me a safe space to be able to feel a bit more part of life. Creating a blog is a way of being able to share my experiences with others, to provide information for those who do not understand the illness, and possibly help others that also have M.E. 

How did my blog develope?
The first few years I just made do with a free domain and a bog-standard template. This did not give me much inspiration to express myself, and although I knew that my posting would be very sporadic, I wanted a proper website to make my mark in the world. Myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS) is classed as an invisible illness because its symptoms aren’t always apparent to the naked eye. Sadly being housebound can make one feel physically invisible too, and having a piece of the internet that is mine, even if I don’t use it much, has helped me feel a little less invisible.

How did I design my blog?

These days it is really easy to find people online to buy a blog template off or get a bespoke design for a small amount of money. Luckily for me I had a friend who is not only a whizz at website design but also a brilliant artist so I got in contact with her to see if she could upgrade my blog with blogger into looking more professional and pleasing on the eye. And, well, I love the finished article. She did such an AMAZING job! She asked for examples of other websites I liked and a list of my favourite things. She found a blog template, which we bought, and then went about drawing the artwork around my love of my cat Twinkle, the seaside, baking, my passion for acting and of course referencing my health. I spent a lot of time thinking whether I wanted to include myself in a wheelchair as I was still feeling pressure from the stigma of being disabled, but at the end of day it is my reality that, when I leave the house, I use a wheelchair. The blue ribbon is also a nod to my health as it is the offical symbol for raising awareness for M.E.

I would like to give her a shout out as I highly recommend her work:

Leonie Creates

Graphic Design and Illustrator Website: www.leoniecreates.co.uk

Buy her beuatiful prints at: https://hellosquid.co.uk/

Buy her cards at: www.thortful.com/creator/hellosquid 

Email her at: design@leoniecreates.co.uk

Instagram: @leoniecreates

What do I write about?
This blog is in no way about work or having a brand. I didn’t have a particular focus in mind when I started it. I wanted it to evolve naturally and write about the topics I felt I wanted to write about at the time. The whole point was to give me space in the world and I didn’t want to restrict that. However I realised quickly after writing a few posts, that really, the type of content I was creating was just about my life and lifestyle. It is just a small reflection of my own thoughts, feelings and experiences of the world. It is no way supposed to be an aspirational or educational blog because everyone’s experiences are different. At the end of the day it is just a place for me to not be so invisible and express myself about things I do, my opinions on culture and my health experiences, when I feel well enough.

How do I write notes?
I have probably written hundreds of blog posts in my head, most of them will never appear as I do not have the energy to create them. Sometimes though they make it out of my swirling vortex in my mind and they tend to come out in different ways. Sometimes I speak straight into my devices, whether that be a tablet, phone or laptop, that converts my voice to text. Most modern devices and software do this very efficiently. I do also occasionally jot down a few notes in whatever notepad I have to hand. These notes are usually a stream of consciousness or sometimes as bullet points, or as poems. The finished article is always me speaking into my laptop and then doing edits by hand a.k.a typing! I find this is the quickest and easiest way to make my thoughts and ramblings that I have recorded or written down and put them into some sort of readable hopefully enjoyable format.

 

Tips

Although this is not a how to blog, I thought I would include some quick tips if anyone reading this wants to start a blog but is feeling overwhelmed!

1. Get some help either use Grammarly, the basic free service checks basic spelling and grammar, or ask a friend or family member to check it over.

2. Use whichever platform you find the easiest to work with. 

3. It does not have to be a paid for domain and have fancy graphics. If you want to get your word out there just start with a free template on whichever free platform you're using. 

4. If you do not know where to start look on Youtube for videos that cover how to start a blog. I recommend Meg Says. She is a fellow chronic illness sufferer with a successful blog and YouTube channel which she started from her bed! I have included her too How To videos on starting a blog below.

 

How To Start A Blog: Step By Step For Beginners | Meg Says

 

 

Top 5 Tips For Blogging Beginners (From A Full-Time Blogger) | Meg Says AD

4. As lovely as photos and graphics are if you do not have the energy to include them, then it does not matter. It is tempting to only put beautifully illustrated posts out but when you are limited on energy this can be a step too far and will prevent you from ever getting around to publishing anything.

5. If you want to include pictures but you are too tired to be able to take any then you can create graphics for free. I use Pablo by Buffer and the free parts of Canva.

My thoughts after writing this post
I nearly did not publish this blog because it felt so insignificant. However, now I know to not to press publish, would be to validate those feelings of invisibility and I do not believe anyone with a chronic illness is invisible and that should include me. I feel insecure about every blog I publish. I worry it is not good enough or I have made a mistake or even revealed too much about myself. At the end of the day though it is first and foremost a space for me, then a space for others with M.E. or chronic illnesses and other people. The only opinions that matter are my own and every time I press publish I am proud of myself for achieving something, and that is the most important thing.

P.s. I really hope there are not any glaring mistakes in this but I just want to get it out there now (as it has taken 10 months for me to be well enough to publish this)!

My Top Refined Sugar Free Chocolate

If you want chocolate that is as healthy and ethical as possible, I have quite a knowledge on the subject. I am constantly researching to find new brands that fit my following dietary requirements- they have to be free from: gluten, dairy, refined sugar, soy, preservatives, additives, fodmaps, unnecessary emulsifiers and IC diet friendly. I am also keen on ethically sourced ingredients and not using plastic. I have put together my current top three favourite chocolates that I enjoy.

Special Occasion Chocolate

Enjoy! Magical Mint Buttons

RRP: £4.99 for 96g

I have enjoyed all the products I have tried over the years from Enjoy! and they constantly seem to be improving and perfecting their offerings. However, I had never tried their mint caramel flavour until a wonderful friend gifted me a stash of their products for my birthday. And I have to say, even though I would recommend any of their chocolate or fudge, their mint caramel-filed chocolates are my absolute favourite. As a child, when I was just gluten-free, my go-to chocolate bar was Fry's Peppermint Cream, on special occasions I opted for After Eight Mint Chocolate Thins, and on very special occasions, Bendicks Bittermint (my grandfather would only really eat Bendicks, so it runs in he family)! Since having a multitude of complicated dietary requirements dark chocolate filled with liquid minty goodness has not been available. I've had the odd bar with mint oil, such as Montezumas Absolute Black with Mint, which I do love, but it is not the same as a silky liquid minty centre. Suffice to say when I opened the 70% raw chocolate buttons bursting with mint flavoured caramel, I was both eager to try them but also unsure whether they would live up to my peppermint fondant dreams. Let me tell you, they do! They are advertised as caramel, and I was worried they would be overly sweet with just a hint of peppermint, but I was wrong. The soft centre, was dark and oozing and tasted so beautifully of mint I could not believe it. I was thrilled and savoured every bite, being a chocoholic the packet only lasted the day but they took a while to eat as the depth of the flavour against the dark chocolate was so perfect each button was enough on its own. You can also now buy this flavour as a 70g Mint Caramel Bar, I am yet to try the bar, but I like the idea of the buttons as it is more reminiscent of a box of delightfully gooey minty chocolates from my childhood.

Get free shipping on your first purchase by using the following link:

https://prz.io/XgN3G0VCK

  https://joyofenjoy.com/discount/creatingrebeccahhttps://joyofenjoy.com/discount/creatingrebeccahhttps://joyofenjoy.com/discount/creatingrebEveryday Chocolate

Montezumas Absolute Black Chocolate Buttons

RRP: £3.99 for 180g

I have had tried most 100% chocolate I come across, although many brands are not affordable on a daily basis. I have not tried one I do not like. The great thing about it is I really cemented the fact that I was a true chocolate lover, and not just addicted to that sweet ultra-creamy stuff that we are surrounded by. Every bar has such a unique flavour, you can taste the difference in the cacao bean. The flavours are always rounded, full and complex. There are 100% chocolates that I might rate higher for me in terms of flavour, but the price point is just too high to eat every day, so my current everyday chocolate of choice is from the wonderful chocolate brand Montezuma. I have to say their Absolute Black range is excellent. They have even started to flavour some of their chocolates, which is such a treat for those of us avoiding even unrefined sugars! This also comes as a bar, but it is cheaper and more versatile as chocolate drops and we always have a large stash in our cupboard both for daily eating and baking. The amazing thing about this chocolate is that I have found from time to time the flavour changes, which proves how authentic their chocolate is. None of this “has to always be the same and generic or consumers won't understand” nonsense. Just properly made chocolate from the cacao they are sourcing at the time. I have two batches at the moment, one is a little more bitter, fruitier and has a slight alcoholic taste. The other is wider but flatter button and is sweeter and smoother with a hint of coconut. Yet both are purely 100% cacao! And I have to say I love both. You will happily find me munching away on a small number of buttons with decaf Nespresso at about midday, every day. I am a big fan of all Montezuma chocolate and used to enjoy their dairy-free ranges as a treat when I still ate unrefined sugars. Their truffles are superb. However, sadly these are not suitable for me anymore. But, recently they have expanded their range of Absolute Black and now produce delicious Christmas and Easter products too, at very reasonable prices, I particularly recommend the absolute black chocolate and coconut oil Christmas truffles! To top it all off there is no plastic in sight in any of the packaging!

Good Old Fashioned Bar of Choc

Ombar 72% Chocolate Bar

RRP: £3.29 70g bar or £1.99 35g bar

Ombar was one of the first brands I came across when searching for raw, gluten-free, dairy-free, refined-sugar-free and soy-free chocolate a few years ago. I had pretty much given up on ever being able to eat a bar of chocolate again, so was thrilled when I found this brand. Over the years they have added to the range, and I can eat a fair amount of their flavours. They have brought out many more variations on their 35g and 70g bars over the years and I am partial to their centres range. However, sometimes I feel like deviating from my 100% chocolate bar to something more reminiscent of the type of chocolate bar I used to have from the tuck shop or no the way home from school as a treat, and this is where their plain bars excel. They do not contain added emulsifiers or preservatives or loaded with unhealthy fats and sugars. They are plain and simple, but not ordinary. My current favourite is the 72% Cacao bar, which is simply just unroasted cacao, coconut sugar, cocoa butter and live cultures: Lactobacillus Acidophilusis. Ombar describes it as “delicate and well balanced, with floral, jasmine-like tasting notes” and I have to concur. It has a lovely snap, which is often lacking in some brands of chocolate that have the same free-from ingredients, it is smooth to the taste, melts beautifully and is delicious enough to quench my desire for chocolate. This is my top go-to bar, at the moment, for a high-quality raw chocolate bar that hits that chocoholic spot time and time again! If you are after something sweeter and creamier I would recommend trying Ombar's Coco Mylk 55% or Ombar's Coco 60%.

My chocolate story (in a nut, or should I say cacao shell)

 

I always loved chocolate, especially good quality chocolate. As a tiny child, after being diagnosed as with Coeliac Disease, the only thing I could eat in a cafe was the chocolate truffles (if the cafe had them), and I was always allowed to choose two. Fast forward to a few years ago and my M.E. specialist directed me to some research that indicated a small amount of dark chocolate a day was helpful for fatigue in M.E. patients. I was very happy. However, I had already given up on chocolate (much to my dismay) because I could not tolerate sugar at that time. This led me down a route of adding cacao powder to things to tide me over while I looked for an alternative. Diabetic chocolate was not an option as I react worse to the types of things they add for sweetness than actual sugar. Eventually, I came across chocolate made with coconut sugar and started eating a little bit a day. I found I tolerated unrefined sugars like coconut sugar and maple syrup, that are low in fructose,  much better than regular white or brown sugars. This was mostly fine but there were some weeks I could not cope with it daily. Soon I was up to 90% chocolate and had to be careful with the unrefined sugar in that too. However, soon I came across 100% chocolate and was thrilled to try this. Now, even though I was used to very dark chocolate, initially I found a tiny bite very strong. However, I now love 100% chocolate and have tried many different brands and eat it every morning. I have come accustomed to it so much I could eat it all day long if I let myself. I also find it really helps my stomach calm down after eating most of my meals if I need it (sadly I can only eat it before 5 pm, so it cannot help me digest supper)! I still need to control my unrefined sugar intake and most days I save it for a homemade cake made with low amounts of coconut sugar or maple syrup. I still adore any chocolate, that meets my dietary requirements, and I thoroughly enjoy both chocolate that is 100% and not 100% cacao!

 

Oh little bird

Oh little bird I see, don't stop singing for me,
Your song is so sweet, it makes me feel so complete.
I need the tune I hear, so I won't shed a tear,
And, to protect my soul from the life that takes such a toll,
On my body, mind, and everything of that kind.
Oh little bird I see, don’t stop singing for me!

Oh little bird I see, don't fly away from me,
Your presence is calming, it stops the world feeling so alarming.
I need to see your feathers, oh so shiny to keep me tethered,
And, to make sure, I stay grounded and pure,
On my intentions and hopes, to not let happiness elope.
Oh little bird I see, don’t fly away from me!

Oh little bird I see, I must let you be free,
Your wings must flow,  so I must let you go.
I need to allow your flight, to share your beautiful light,
And, the joy you spread, to be felt by those who this earth tread,
On my honour I will not forget, the wonder your presence begets.
Oh little bird I see, I will let you go free.