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:
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?
My mesologist has put me on diet that only includes foods that are easily digestible. So I cannot have gluten other than spelt, I can only have meager meats (such as chicken or lean beef), non-fermented cheeses (so that excludes mozzerella, brie and the like). Oh and I am not allowed to eat raw vegetables, so salads are out of the question.
This week somehow everything has made a 180 degree turn… Honestly, it has been pretty fab. Although my energy levels are currently not that great, I have been able to get a bit of exercise in and have been able to get my eating under control. Which is a miracle considering hell week is coming up, and I have the tendency to munch on anything and everything the week before. It’s like my body is preparing for a monthly week of hibernation and thinks it needs to stock up on supplies or something haha.
So, Mesology…. I am pretty sure the majority of you will have never heard of the term. Well, I honestly hadn’t come across it either until my boss brought it up. Apparently a friend of hers and a co-worker have made great progress with it. So she urged me to give it a try. As I currently have nothing to loose and everything to gain, I decided to give it a shot!
3. My body does not like rice. According to my mesologist my body cannot process rice very well so she has forbidden me from eating rice for the time beaing… Yeah… So hardly any potatoes and no rice. *Insert sad teary eyed face here*. This is basically what I eat with every meal, so that is going to be interesting. Thankfully I can have quinoa, bulgur. couscous, red lentils and sweet potatoes. So I have been looking up recipes with those ingredients. I have already tried a really nice broccoli, quinoa and cheese casserole by 
5. My digestive system isn’t in a much better state than my immune system. In fact, it might be worse (yeay!). When I went to the hospital because of my intense fatigue about 4 (?) years ago, I complained to them about being nauseous all the time. Since stomach pills alleviated the nausea, they concluded that I had too much stomach acid and prescribed stomach protectors. At that point in time they were unable to pinpoint the fatigue, because my bloodtests were good. During later hospital visits in which they focused on my fatigue, I suggested multipletimes that there might be a correlation between the nausea and my fatigue, but they dismissed this. These were clearly separate complains (which just happened to surface at the same time… right).
Now if only my digestive issues would have ended there. But oh no, there’s more! Apparently my small intestine is not working properly. To put it into perspective: if my intestine was working properly, my electro-acupuncture meter should have indicated at least 40, or preferably 60 and above… instead it read 12! So what does this mean? It means that my small intestine often fails to tell the rest of my body which fluids it needs to produce to get all the nutrients out of my food. Now, I have no problem absorbing the nutrients once they have been extracted, but because my food is not processed properly I simply do not get enough of them. As a result, I get increasingly more tired, as I am pretty much constantly undernourished. My mesologist even suggested that this might even be the cause of my intense nightmares.
Meaning I might be able to get rid of the majority of this mind boggling, draining, annoying fatigue yet! *insert Haleluja chorus here*. I swear, if she can help me get rid of this fatigue, I am buying her one massive bouquet of flowers (I would buy whine, but I have no idea if she likes alchohol).
Unfortunately, the diet has still left me struggling with fatigue big time. I have had a number of weeks when going to work three days a week was pretty much all I could manage. I actually had to drop everything else, because I was physically incapable of doing it or because I was so tired that the thought of it simply stressed me out.
Last Saturday I decided it was time to get my ducks back in a row. I did some Yoga, planned the upcoming week and was frankly ready to get back on track… And then I got hit by some kind of virus or bacteria. Which has resulted in me leaving work early on Monday and just sitting on the couch with a body that was just a trembling heap of missery for the rest of the week. My legs felt shaky and I got out of breath just walking from the couch to the kitchen and back: and that’s 30 freaking steps (I have counted them)…
When I decided to cut gluten, dairy and meat from my diet, I was not really prepared for the withdrawal symptoms that go with it. Last weekend I had a significant drop in energy levels. On Sunday I was particularly drained and had to deal with dizziness on top of one of my morning colds.
the anti-inflammatory fruitsies, veggies (think berries, broccoli etc.) and Asian mushrooms. The diet also requires you to eat lots of fish, beans, tofu and other biological soy based products. Your food has to be both dairy and gluten free. So, basically all animal products are out with the exception of fish (which makes it nearly vegan). Dr. Weil has published a really nifty food pyramid on his 
As the diet has helped a number of people with auto-immune deceases, I thought: nothing ventured nothing gained. Let’s give it a try!
I had initially decided to start the diet after my birthday. I really wanted to have cake before saying goodbye to gluten. Moreover, quite frankly I did not really look forward to having giving up bread or meat: I love both with a passion haha.
I will also be making my lunches, which will consist mostly of baked seasoned tofu, beans and brown rice. I might switch it up a little once I have found more recipes (and have the energy to cook more elaborate stuff). The tofu is going to be interesting though, as I have neither eaten nor cooked it before. ^__^” But here’s for trying new stuff!
Postively Mar 