Recovering spoonies: lacking online representation

I have never really been one to use my blog for super deep retrospection or to advocate for anything in particular, yet this blogpost has been in the back of my mind for a while and well…. here it is.

Like most people I turn to social media for inspiration and motivation. This can be just daily motivation to keep me going through the day, or for inspiration with regards to wellness and leading a healthy life style. However, I have increasingly found myself dissapointed with the lack of representation for recovering spoonies like me. If you are not sure what a spoonie is, Wikipedia is your friend ;).

By far the majority of wellness and lifestyle influencers, vlogers and bloggers cater towards able people. They constantly repeat to you that for a healthy lifestyle you need to balance your food intake with exercise: it’s 80% food and 20% excercise. They stress that you need 8 full hours of sleep to be well rested to get the most out of your day. To stick to morning routines with yoga, medidation… all that jaz. They then post really delicous looking recipes that are “so easy to make”. And to encourage you to do all this, and to get to your own goals they post one picture after another that is a variation on the one below:

8 Motivating Tips for Weight Loss

Well, imagine seeing this everyday whilst having a body that you will literally make you sick when you exercise to much. As someone who suffers from Chronique Fatigue Syndrome I literally risk getting into a crash when my heart rate is elevated for a prolonged amount of time, which makes exercising extremely tricky. And when I say a crash I don’t just mean I get tired. It can cause a range of symptoms, including physical pain (joint pain, full body pain and throat ache <– or a combination of all three), less control over my emotions (mood swings are a bitch), nausea and dizziness, other flu-like symtoms… Yeah it’s a real doozy.

Moreover, one of the issues with Chronique Fatigue Syndrome is that even if I sleep I do not rest. So even if I sleep 8 hours a night, I still wake up tired. This makes sticking to a mourning routine quite hard, even though I do force myself to do this for as much as I can. It’s a bit hit and miss, but I just take every day I do get up at 6 as a win.

Which brings me to the great weight-loss recipes… Yeah they are great. Just not if you aren’t allowed to eat half of the ingredients that they have in them (because of intollerences… trust me, most spoonies have a bunch) and are too complicated for you to make, cause newsfalsh you are tired or in pain, or both… all the time.

And then it is topped off with the constant reminder that you need to try harder, despite the fact that you getting out of bed and doing the things you need to do is already part of you trying really hard. Literally for spoonies, recovering or not, just doing the things they do costs a lot of effort and sometimes the staple “get healthy!” motivational quotes just make you feel like you aren’t cutting it. Like the hard work you do for just “showing-up” (whatever that may mean for you) isn’t enough.

Even the recovered spoonies who are trying to help you recover trough their own experiences fall into the trap outlined above. They post pictures of themselves working out in the gym and keep chanting this mantra of pushing yourself. I realise for them they of course also want to share their achievements and you know what? More power to them! But do not pretend like showing a picture of yourself in a gym is helping your fellow spoonies get where you are, because let’s be real: it isn’t that easy. It seems that they have forgotten how hard it was to get to that point and that wesometimes you just need to give ourselves some freaking grace and acknowledge how hard we work to do the things we do.

So I have instead been following influencers that advocate for disability and spooniness. And they are great. They have taught me how to check in with my body, to be more accepting of how I feel on bad days and to not constantly feel like I have to push myself. Especially an influencer on Instagram called Kat Inokai has helped me so much in embracing my spooniness. If you are spoonie reading this, make sure to check her out.

However, these people advocating for disability and spooniness are usually people who suffer severely from chronic illness(es). They have not yet gotten to a point in their recovery where they can focus on trying to start exercising again or losing any of the weight they may have gained. They are off far worse than I am.

They cannot yet share in the struggle to keep of keeping a balanced diet where it goes well for a couple of days, but then you get to the point where you are so tired that your body just tells you to eat… a lot. And because you are so tired you don’t have the energy to cook anything. So you grab something that isn’t great for you. And you know this, but at that point you just don’t have the energy to fight the cravings, or any willpower left to resist, because you needed all of that just to make it through the day.

They are unable to display the struggle of doing exercises that are low-impact and the feelings and thoughts that those trigger. Like: is this really all I can do now? Surely I can do more than this? But if I do, will I get a crash? How much exercise is safe for me to do right now? Should I do this every day, every other day? Once a week? All of this with no guidance, as frankly: no one is figured it out yet!

So again I find myself lacking representation. I find myself wondering why the “wellness” industry isn’t incorporating us in their narrative? There are so many of us, so why ignore us? Are we scary, because you don’t know how the advise you give us may affect us? Well, newsflash the advise you are just producing on “default” now sure ain’t doing much for us either.

And where are we ourselves? Where are the spoonies that are still in the midst of recovery? The, as I have begun to refer to myself, “high-functioning spoonies”? Are they just as lost as I am? Are they not showing themselves/ not advocating for our experience of spoonieness, because our lives are kind of boring? Do we feel like our lives aren’t interesting enough to be put on social media, because it is a repetition of the same thing over and over again, as we don’t have the energy to add anything new into the rotation? Is it because we are so desperately trying to hang on to be able to do the things we can, that we don’t have much energy for anything else, including advocating for ourselves?

I have reached a point where I am seriously considering becoming this advocate myself. Despite my life being boring and me perhaps not being the best example of a recovering spoonie. As I said, I am pretty high functioning, which may make it hard for others to relate to me. I have a fulltime job and am trying to finish a PhD: not the easiest to relate to. But then again, if there is one thing I have learned from CFS, it’s that everyone’s experience of it is different. Everyone is affected differently by it. So why would my experience of it be less valid? And maybe there are people who will find confort in me fighting to maintain my “boring” life, because they are doing the exact same? Maybe it will inspire others to share their story as well.

What do you think dear reader? Should I step up?

And so it begins… Tun tun tuuuunnn!!!


Yes that’s right… A second blogpost in one week. It’s a Christmas miracle lol. I thought it would be nice timing though, as I officially start my weight loss journey again today.

Now I’m not going to share any before and after photographs or measurements, as I would like to keep those private. However, I will share with you my starting weight.

This morning the scales read: 77.2 kg (170 lbs)… which is apparently the same as 513 Guadeloupean banana’s!

Picture taken from Weight and Things

All joking aside though, that’s almost 3 kg heavier then when I started this weight loss blog last time. It’s the heaviest I have been in about a decade. Not a proud moment, I have to admit.

How did I gain all that weight you ask? Well let’s just say that lockdown and stress eating are a pretty lethal combination. Since Covid has apparently decided to stick around for a while, I cannot do much about the lockdown part. However, that does not mean that I cannot take better care of my body.

So, time to set a new weight loss goal. For now, I want to focus on getting down to 71kg (156.6 lbs), as this would put in within a healthy BMI range (I’m 169cm). So I have to lose 6 kg (13 lbs) or 40 bananas lol.

Having been here before, I know how important it is to have the right motivation behind weight loss and I thought I’d share with you all my reasons for wanting to lose the weight (again). In the previous post I mentioned wanting to fit into my clothes again. And yes, that’s a really good motivator. However, the most important reason is health related.

As most of you lovely readers will know I have Chronic Fatigue Syndrome. Apart from a lack of energy this chronic illness brings with it a lot of other issues for me, including digestive issues and joint pain. Both are aided by pursuing a healthy lifestyle. Eating only those foods that my body can digest properly and that nourish my body will result in more energy: the less effort my stomach has to put into digesting things, the more energy it can spend on other things. And for the joint pain: more weight equals more strain equals more pain.

Ergo, for me to feel the best I can with my illness I need to take proper care of my body…. I know: shocker! And yet, the past couple of months I have not really been doing that. In part that was because of me just getting complacent and part of it had to do with the stress of finding a new job during a global pandemic. Having found the new job though, there really is no excuse for me to continue stuffing food that I know is not necessarily doing me any favours down my throat… I’m looking at you chocolate digestives…

So that stops now. From today I am back on the weight loss train and my lovely coach Kim has sent me a handy week planner to track my food, water intake and healthy snacks. I will also be tracking my calories and macro’s again using myfitnesspal. It’s easy, it’s cheap: what’s not to like? lol

I have also been considering doing the 1 gallon of water a day challenge that everyone and their grandmother is currently doing. But gosh that is a lot of water. 2 litres? No problem! I do that everyday. But 3.7 litres?! That is a struggle (I may or may not have tried it already lol).

Nothing ventured nothing gained though, so bottoms up and see you in the next blog ;).

Thought I’d throw a cute pic in here of our cute little Biscuit.