Home » This is ME ~ May 12th – International ME/CFS & FM Awareness Day

This is ME ~ May 12th – International ME/CFS & FM Awareness Day

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I love this little blog of mine, my own little corner of the Internet. Making beautiful food and taking pictures of it to share with you makes me pretty freakin’ happy. But despite this, I don’t post very often, certainly not as often as I’d like. If you’ve read my “about page“, you probably know part of the reason why – I have Chronic Fatigue Syndrome.

May 12 is the International Awareness Day for ME/CFS & FM, and I decided to finally write a little (ok, it didn’t turn out little!) post with my story, since it is one of the main reasons this blog exists in the first place, and because the more this little-understood, somewhat invisible illness is talked about, the better.

I never wanted to drown this blog with my health issues, so don’t worry, this is (and will always be) a blog about pretty, sweet food. If you’re only here for recipes, and you’ve started feeling a bit “omg if I wanted to read something depressing I’d read the news!”, then feel free to browse my recipes instead if that’s more your jam, but if you’re keen to know a little more of the background behind the blog, then keep reading.

This is ME - May 12 ME:CFS Awareness Day

(The bit where I tell you what the hell this illness is)
(If you don’t already know)

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) is a medical condition which has the main symptom of severe fatigue that is not caused by exertion and is not improved by rest.

It has many other debilitating symptoms including, but not limited to, muscle and joint pains (including Fibromyalgia, which is a condition on its own, but also common in CFS patients), muscle weakness, headaches, swollen lymph nodes, cognitive difficulties (‘brain fog’) and depression. Many CFS patients also experience cardiac and digestive problems, and many females with CFS also have endometriosis (as I also do). Physical or mental exertion generally causes a prolonged increase in symptoms.

To be diagnosed with CFS you must have experienced these symptoms for six months or more. There is no specific test for the illness, and it is diagnosed only after ruling out all other possibilities. At this time it is a relatively little understood illness, with no scientifically clear cause, no known cure, and no illness-specific medication. The only treatment is to attempt to manage and minimise the various symptoms. Most people attempt this with both pharmaceutical treatments, lifestyle changes and alternative therapies. Many people with CFS suffer the stigma of having an ‘invisible’ illness and are often treated as lazy or unmotivated because they “don’t look sick”. Those with severe CFS are often house-bound or bed-bound.

(The bit where it hit me)

I was a pretty healthy child until one year when I was at primary school and I caught a Glandular Fever-like virus. It knocked me down for a few weeks, but I was soon back to normal. However every year, during winter, I would get similar symptoms again, usually requiring me to have a week or so off school.

When I was 13, and starting my first year of high school, I found myself really struggling to wake up in the morning. I was exhausted all day and was regularly going home from school early because I simply couldn’t function. I couldn’t keep up with the work, and as a previously very high achiever at school, I couldn’t understand why I had suddenly ‘got stupid’ and could barely follow what the teachers were saying. I also developed an intense, migraine-level headache that was there almost constantly for several months, which only began to reduce in severity once we made the decision for me to have some time off school, and not have to force myself to be awake in time.

My mother had taken me to the doctor, concerned that I was depressed. My doctor, having known me all my life and therefore knowing what a smart-arse I usually was, could see that I was too exhausted for our usual banter and told me he suspected I wasn’t tired because I was depressed, I was depressed because I was so tired. His initial diagnosis was Post-Viral Fatigue Syndrome, which, after six months (and after tests to rule out other possible causes, including a visit to a neurologist to rule out other causes of the migraines) was diagnosed as Chronic Fatigue Syndrome. Anyone who has struggled to get a diagnosis for an ‘invisible’ disease like this will know how lucky I was that he picked it up almost straight away.

I don’t fully remember much of the following couple of years, but my general state was that of complete and utter exhaustion. Despite being so incredibly tired, I struggled to sleep, most nights I sat up until 3 am, my poor mother sitting up with me so I wasn’t alone. Once I eventually got to sleep, I would sleep for at least 12 hours, sometimes many more, struggling to wake up even though I knew if I didn’t it would be harder to sleep that night.

When I say I was ‘tired’ I feel like the word is so ridiculously insufficient, it’s like saying a tsunami is “a bit of a wave”. I wasn’t just tired, I was, without a word of exaggeration, so tired that I wanted to die. There are many causes other than CFS for fatigue like that, but no matter the cause it is difficult to explain to someone who hasn’t experienced it. 

My legs felt as though they each weighed as much as an elephant. My brain struggled to give any part of my body instructions for moving. Some days I couldn’t make it the ten or so metres from my bed to the toilet without help. I had to have a chair in the shower, on the days when I was even up to having a shower. My mum had to wash my hair for me. My body ached as though I had run a marathon and then been beaten with a baseball bat. My brain felt as though it was made of porridge (I later learned that the commonly used term is ‘brain fog’).

The depression got worse before it got better. I hated myself for not being able to function. I hated not being able to do the things that a ‘normal’ teenager should be doing. I lost contact with most of my friends, who couldn’t understand what I was going through. At the time I was angry, that they ‘gave up’ on me, although now of course I know it wasn’t their fault, how could they understand what was happening to me when I didn’t even understand it myself? Instead of doing those normal teenager things, I was trying medication after medication to try and control my list of debilitating symptoms.

(The bit where nothing helped)

In the following years, I tried what felt like every ‘miracle cure’ known to man, from dietary changes, vitamins, minerals, herbs, various ‘miracle supplements’ to biofeedback. I tried doing absolutely nothing, and I tried pushing through the tiredness, which would result in an even longer period of being completely unable to function.

I tried ‘telling’ my body that it was healthy, trying to limit my negative thoughts in the hope that I could fake it until I made it. It felt like everyone we spoke to had a brother’s uncle’s cousin with this illness, “and this is what they did and now they’re cured!” Whether that was true or not, they didn’t work for me. Some things helped for a short time then stopped. Some things made me worse. Most of them made no change at all, except in my parents’ wallet.

I collected more health issues, I was diagnosed as having endometriosis, I developed gallstones when I was 16 and needed surgery to remove my gallbladder. A couple of years ago I started having problems with my heart, which would suddenly speed up to a terrifying rate, and just as suddenly slow down. This lasted for months, making me feel like I was constantly running, and causing anxiety which in turn made my heart race faster.

After having an electrical study done on my heart (including having my heart slowed to a stop, the weirdest thing I’ve ever felt!) it was diagnosed as inappropriate sinus tachycardia. The various medications the cardiologist prescribed didn’t work, but after a long wait our application for me to try a drug not readily available in New Zealand was approved, and that slowly began to control the racing. Each new health problem and surgery set me back, exacerbating the CFS symptoms to varying degrees, and leading to many of my worst relapses. 

Aside from medications to help the main CFS symptoms (drugs to help my sleep cycles and stomach issues) the only thing that truly helped me function was to know my limits and not cross them. Pacing myself and being careful what I spend my energy on has been the best treatment for me.

Sometimes I push my own boundaries and I pay for it – with days, weeks or months afterwards in which I relapse and am almost back to square one. I know now that it is up to me to choose whether whatever causes that is worth the aftermath. Without knowing it when I started, I was using ‘spoon theory‘ and learning to “spend my spoons” as effectively as possible.

I have been incredibly lucky with the people in my life who I am closest to, doing their best to understand what I was going through, and to help me cope. But I’ve also encountered people who thought I was just a lazy teenager, whether they said it to my face or not, it’s been there.

There were people who didn’t believe I was unwell because (despite my initial drastic weight loss from being too tired to eat, my pallid skin and dark circles under my eyes) I “didn’t look that sick”. There were people who accused me of doing it for attention, like a teenage girl wants to fake needing help to get to the toilet, wants to pretend they’re too tired to go out and do fun stuff with their friends, all for the purpose of getting attention. There are other, more effective ways to get attention, and as a reasonably intelligent, previously high-achieving girl, I could have come up with a million other ways.

There were people who insisted that if I just forced myself to wake up earlier then I would be able to get to sleep earlier, or if I just went to bed earlier then I would get to sleep faster. Those people have no idea how much I wish that would work, it would have made things so much simpler. But they don’t work, and it’s a waste of energy trying to convince them of it.

For the first few months after I stopped going to school, they would send work home for me to try and keep up with. After a while, I began doing correspondence school, as it allowed me to work when I felt up to it. I actually really liked correspondence, although I still struggled with the brain fog. Often my brain worked best in the middle of the night, so I would sit up and finish an entire maths workbook in a few hours. Sometimes weeks went past and I couldn’t manage anything.

Once I was old enough to decide for myself, I chose to stop doing correspondence as I wasn’t getting enough done and the guilt and disappointment were too much for me. I figured that at that stage I was unlikely to ever go on to university level study, though for most of my life I had assumed I would.

A couple of years later I decided to do an Open Polytechnic correspondence course in business administration, with the thought that if I could never work for someone else (who wants an employee who may need months off work at the drop of a hat?) then maybe one day I could start my own business. As well as the course certificate, I received NCEA credits, which, when combined with the credits I had received while doing correspondence, meant I was able to finally achieve NCEA Level 1 (the lowest level of high school achievement in NZ).

(The bit where the cakes come in)

A few years after I first got sick, and not having any money to buy birthday presents for my family, I began baking them birthday cakes. As my health gradually improved, I could spend a little longer working on the cakes, and I discovered how much I loved decorating them. It was something I could do to bring happiness to the people who I felt I had only brought misery to for so long.

People other than family soon began asking if they could buy cakes from me. I began tentatively making the occasional cake for the cost of ingredients, and more and more people started wanting them. Eventually, I realised that it was just too much for me, the time and energy spent making them, the long nights when something didn’t go to plan, and the stress of trying to get cakes done on time was too exhausting.

Obviously, I was also doing what many cake decorators do and selling cakes from our home kitchen, and while I was terrified I would get in trouble with the council I knew I couldn’t make enough cakes to cover the cost of hiring a registered kitchen. This was around the same time that I had developed the tachycardia, and it was exacerbated even more by stress. So I made the decision that I would only do cakes for friends and family.

Also around that same time, my Dad was diagnosed with Coeliac disease, and I began trying my hand at gluten-free baking. I worked hard to make them taste as though they were just any kind of baking, and soon people started asking me for recipes.

(The bit where I started Sweetness and Bite!)

Aaaand… this is where this blog comes in! I wanted to have somewhere to share my recipes, and some of the cake decorating techniques I had learnt over the years. People were frequently asking me for recipes and decorating tips, and I thought perhaps I should have somewhere to put them all. 

While my health has improved drastically from what it was when I first got sick, unfortunately, it still doesn’t allow me to work. I still need a lot of sleep and don’t know what I will be capable of from day to day. But with this blog, I can bake and photograph the food on the days when my brain and body are both working, write on the days when my body is tired but my brain is functioning, and obviously still do nothing at all on the days when nothing is working as it should be.

In 2016 I joined Mediavine and I’m now making a small income from the blog with advertising. It’s a pretty amazing feeling to be finally making money doing something that I love!

(Where I’m At Now)

I’m updating this post now in 2019 and it’s been over 17 years since I got sick, which is more than half of my life. I’ve been sick for longer than I wasn’t. Which is a horrible thought really, and I’m not going to try and spin some kind of “it’s been a journey, self-enlightenment, blah blah” crap. I don’t have the energy for that. It’s still a balancing act to try and keep myself as healthy as possible, and I do still have a bad habit of collecting new health conditions along the way. I still live with my parents, so I don’t have to be alone on the days where I can’t do anything. Luckily we all get along pretty well (most of the time ?).

People are often surprised when they find out I have this illness. I still don’t “look sick”, in fact when I have makeup on and I’m out and about, you really would never know unless I told you. Because if I’m out of the house, then I’m having a good day. Most people don’t see me on my bad days. The days where I have no choice but to spend the day in my pyjamas on the couch, with a cat on my lap, waiting for my body to decide it’s had enough rest so we can actually get something done.

I’m not a chronically positive person, in fact sometimes I pretty much have to convince myself not to be negative. Sometimes bribing myself with chocolate works, sometimes it doesn’t. Sometimes I hate the world and most of its inhabitants. Sometimes I don’t. I don’t believe I was handed this shitty-health card as part of some ‘master plan’, some kind of journey to enlightenment. I think it is, frankly, just really fucked up luck.

There is some good news though. I can function reasonably well these days. I’ve gotten to a place where 9-10 hours of sleep a night is enough to get me through most days with a bit of energy. Admittedly things would be better if I was starting those hours before midnight and ending them a little earlier, but no amount of getting up early or going to bed early will fix that.

I generally know how much physical activity my body can handle. I know the things that I am willing to push myself a little harder for, the things that are worth the dip in health that will inevitably come.

I LOVE having this blog. Being in the kitchen, on a good day, with my iPod blaring, my Mum rolling her eyes at my terrible, terrible singing, then getting to share the results with all the awesome people that read my blog is truly my happy place.

I still have a sense of humour, one of the things that I know has helped me get to where I am. I have what I like to think of as a delightfully dark sense of humour. I can, excuse my language, take the piss out of myself, including joking about this shit storm of medical misery that is my body. I’ve been known to shock doctors and nurses with my frankness about my medical history and my ability to laugh about some of its ridiculousness.

I have an awesome family, including my best friend and her family. I have some amazing friends, some of whom I have met through online cake communities and who have become so much more than just ‘cake friends’. Despite being an only child I have “collected” nieces and nephews (not like in my basement, I’m talking about my friends’ children) and I get to love and spoil them like crazy. All these people appreciate my energy when I have it and care for me when I don’t.

In 2018 I started attending counselling sessions to try and help deal with my depression and anxiety, both of which are inextricably linked to my physical health. It’s a long process, but understandable when I think about how long it’s taken to get to this point, and I’m hopeful that working on my mental health will help me deal with my physical health better. I’m still trying to learn to be nice to myself, which can be pretty hard when your body constantly disappoints you and won’t allow you to do the things you want to do.

There are now more and more studies on ME/CFS being done, links are being found, and hopefully, they will one day lead to better treatments, or better yet, a cure. So that we can all go back to doing all the things we want to do.

(The bit where I promise chocolate mousse for reading this)

If you’ve made it all the way to the end of this, then thank you. I appreciate it. Like most people with ME, I don’t need pity or sympathy, just a little compassion and understanding. If my story positively influences your future interactions with someone who has a chronic illness, then that’s great. If you have an illness yourself, and reading this has made you realise you’re not alone, then that’s the best thing I could ever hope for from writing this post (cheesy, but true).

Back when I first published this, I promised readers a super easy 3 Ingredient Chocolate Mousse recipe as a reward for making it through this my story, so head over there if you feel like treating yourself. Whether you’ve got the energy to make it from your very own chocolate that you’ve roasted and ground your own cocoa beans for, or whether all you can manage is to crawl to the kitchen and open a container of ready-made chocolate mousse, I know you’re here reading this because you love beautiful food.

And, after all, that’s what this blog is here for.