My own fault

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One of the things that I struggle with regarding my chronic illness, is the perpetual feeling of guilt. Specifically, because there are so many little things that I can do that, more or less, influence my health, I also always feel like I could have done more.

That I could have stopped myself from scratching; that I could have prevented having a rash at all. That I am perpetuating a vicious cycle that would not be there otherwise. Secretly, I actually believe that it’s my own fault that I am struggling with my eczema.

Unconsciously, this idea is being supported by my environment. Though well intended, people KEEP giving me the unoriginal advice that I should not scratch. Of course, I should not scratch. Of course, I have to keep myself in check. Like I don’t know that… Unfortunately, this also gives me the unintended signal that it’s my wrongdoing that got me into this horrible situation in the first place. And over time, this thought got deeply ingrained into my brain.

But it is not true. I am not the cause of my misery. Of course, yes, scratching my skin until it breaks has a negative impact. Yes, it makes the itching worse. But that’s all of it… it makes the itching WORSE.

Now that the MTX finally enables me to actually influence the severity of my disease, I managed to end up with a completely clear skin a few times. In combination with my hormone creams my skin is so calm that I can keep myself from scratching long enough for all the wounds to heal. Amazing!

But then inevitably, I end up on a hormone-cream-free day and will have a minor setback. The difference these times, however, is that I enter these unprotected days with an undamaged skin. Which means that I can finally find out what the actual effect is of the disease, without the added effect of the rash.

And what gives… it itches. My skin itches. On its own… the whole time… spontaneously… without a cause. Even if my skin is in perfect condition, I am stuck with fucking itchiness.

And that realisation is… extremely validating! Because it takes so much pressure off the whole situation. It means that it’s OK to be sick of the perpetual maintenance, that it’s OK to just really hate the disease. That it’s not my fault, but that it’s just a shitty situation that I happen to be in.

Because sometimes… sometimes it’s just really great not to be able to do anything about it.

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Too good to be true..?

Lees deze post in het Nederlands. This post is part of a series. Start reading here!


Slightly bewildered I shoot upright, flooded by the same uneasy feeling that’s had me in its grip the whole week. Like someone is pranking me and I cannot trust my own senses. Like even if I am not being fooled, this will be over soon. It feels too good to be true and that keeps me from feeling as happy as I should.

I run my hands through my hair and stroke my soft, rash free neck. The effects of years of scratching are still noticeable, but the wounds have disappeared. I expect to feel a wide array of things, but I don’t. No itch on my shoulders, no pain in my hands, no tight scalp. It reminds me of phantom pains. If you are used to experience your body in a certain way for years, it is hardly possible to accept a radical change like this. I just can’t get used to it.

One month ago, I took the first dose of Methotrexate. Nervous for the effects, aware of the weight of my decision and desperate to get rid of the itches. A day went by and then a week, but nothing happened. I knew it was a slow drug, but the fact that I was still struggling and using tar ointment after two weeks was a bit of a downer.

But eventually the effects came, obviously, the negative ones first. An upset stomach, a bloated feeling –read: farting– and a major deviation in texture of my stool. These would later prove to be permanent guests. Then I noticed that my skin was calmer and the itchiness was not as intense. Until I woke up today and, for the first time in years, the eczema had disappeared from my neck. Shocking!

Regular check-ups in the hospital showed that my liver and kidneys could handle the medication, so I could continue to take the pills until the three-month-point on which the effect should be optimal. It is obvious that this does not mean that the medication is not dangerous; the cramps I’m having are no child’s play. I am also retaining water, which explains the abrupt weight change of three kilos.

But hey, my skin is REALLY A LOT BETTER. It almost felt like my eczema slowly melted away. Especially the fact that I (almost) got rid of all the itchiness makes an enormous difference! No scratching means healing wounds, means a stronger skin, means less itching. The right kind of vicious cycle.

What is also epic, is that my big and small coping mechanisms (keeping the house dust free, wearing the right kind of clothes, avoiding negative stimuli, washing the bedlinen, etc.) finally really have an effect. For years, regardless of doing my utter best, I could only hope for less itching. Now I am still spending a lot of energy in avoiding negative stimuli… but at least then the itchiness completely disappears for a short while. And that makes it so much easier to keep up!

Less itching also means less time spent on maintenance, better sleeping and literally spending less energy on scratching, which means that I am also figuratively more comfortable in my own skin. There’s just a fuckton of energy left that I used to spend on being ill. And this gives me the space to really recover; physically, but more importantly emotionally. Finally.

And yes, it is still a very dangerous drug with a lot of risks and a big impact on my life. For example, I am absolutely not allowed to become pregnant, up until six months after I stop taking the medication. Moreover, drinking alcohol is strictly forbidden… like… not at all… which I find a lot harder than expected, especially because I was never a heavy drinker. Something about freedom of choice. And of course, the long-term effects on my liver are still unknown.

But if you don’t mind, I prefer to not think about these things for a while and first enjoy this newly found carelessness.

-Alcohol free- Cheers!

Hanne


Header image by Hanne Kause, portrait by Abel Planting.

Time for desperate measures

Lees deze post in het Nederlands. This post is part of a series. Start reading here!


So, where were we? Oh, right, my skin has been misbehaving for years, I have tried a tremendous amount of creams and finally, in agreement with my physician, I drastically changed my diet three months ago. Now my skin is better moisturised, but my eczema is still really severe and my desperation even more so. Glad to have cleared that up… But yeah… damn… what now?

Back to the hospital once again. After a long journey, during which my dermatologist continued to be hopeful over and over again, in vain I might add, he finally caved and agreed we could not continue like this. So, he started suggesting other options.

I heard about it… nobody talks about these things in my world… but there are always… Options.

Though no one managed to develop a treatment method that actually cures eczema, symptom suppressing medication is available. Or to be more precise, immune suppressing medication. Because, in fact, eczema is nothing more than a side effect of an immune system that takes its job significantly more serious than necessary. But since the immune system is unbelievably complex, and because it influences processes all over your body, it’s hard to develop a drug that effectively suppresses eczema without it having dangerous side effects.

See, again with these stupid trade-offs

For example, I have been taking antihistamines for a long time to keep my allergic reaction under control. Although this drug has very little side effects, the effect is way too superficial to really do anything against eczema. Of course, there are also less innocent drugs that work much deeper into the immune system, but these come with serious side effects. The most prescribed are Prednisone, Cyclosporine (Neoral®), Azathioprine (Imuran®), Mycophenolic acid (Myfortic® and Cellcept®) or Methotrexate.

My dermatologist gave me two options: Cyclosporine and Methotrexate. Cyclosporine is a drug that works quite fast, but you can only take it for a limited amount of time. Methotrexate takes a bit longer to be effective, but in theory I could take it as long as needed. Both medications are terrifyingly poisonous. To give you an idea, these are the most common side effects:

Cyclosporine: High blood pressure; fluid retention; headaches; muscle pain; increased risk of infections, which could lead to fever, flu, coughing, sore throat, severe shortness of breath and tinea; a light tremor in the hands; stomach and intestinal problems like, nausea, vomiting or diarrhea; risk of liver and/or kidney damage; increased hair growth, especially in the face; burning sensations of the skin; inflamed and bleeding gums.

Methotrexate (MTX): Upset stomach and intestinal problems, like nausea and vomiting, or diarrhea; gastrointestinal inflammation; headaches; rash; slight hair loss; increased risk of infections, like flu, UTI, pneumonia, tinea; disturbed blood supply; shortness of breath and coughing; risk of liver damage.

Shit… these are no Smarties…

You can imagine I was not jumping on the chance to take these. Choosing to take medication like this is a serious decision and I did not want to do it unless really necessary. So, I kept having doubts… for a Really Long Time. I had taken the flyers home months before and had read them numerous times. Again, and again, I decided that my symptoms were not serious enough, that I could wait it out, that my skin would probably improve in the summer, that my diet would hopefully be enough… and time after time, I sank away deeper and got more convinced that the time was right for desperate measures.

So, with a heavy heart, I called the hospital. My blood got tested, my urine inspected and my lungs photographed. Everything seemed in order, so I could start if I wanted to. After a lot of deliberation, I decided to choose Methotrexate. With a small voice, I asked my questions about side effects and interaction with my diet and other medication to the pharmacist. And with a big sigh and lots of hugs from my partners, I took the first dose.

Down it went…
On good luck.


Curious how this ends? Continue reading here!
Picture by Hanne Kause.

 

What the fuck do I eat now?

Lees deze post in het Nederlands. This post is part of a series. Start reading here!


I imagine you don’t read my blog because of the exciting plot twists, the thrilling action or the cliffhangers. But sometimes, as a writer, you need to build up the tension by explaining the problem, offering a possible solution, while withholding the results. Sorry 😉

Anyway, I imagine you must all be on the edge of your seats by now. The attentive readers will have noticed that my dietary adventure is secretly nothing more than a mission impossible that can only lead to a lot of impressive action scenes, drama and character building. At least, my initial reaction was:

I’m sorry, what?! What the hell. But… but… but HOW?!

And with good reason.

Keto flu

What my friend suggested is actually an adapted version of the low-carb diets that are popular amongst people that want to lose weight, like the Atkins and kego(genic) diet. Interesting fact: the ketogenic diet is also prescribed to children with severe epilepsy. The primary goal of this diet is to force the body to (mostly) burn fat instead of carbohydrates, which results in the production of ketones (this is called ketosis) that replace glucose as the source of energy for your cells.

Although your body is perfectly capable of making this adaptation, switching to this kind of digestion is an enormous shock to your system. After your glycogen reserve (which serves as an energy source when the levels of glucose in your blood drop below a certain threshold) is depleted, it takes a while before your body gets used to accepting ketones. This period of adaptation is called keto flu. And oh my… that name is no joke! For almost a week, I was suffering from nausea, sleeplessness, fatigue and a very, very foggy brain.

So that sucked.

Oh, btw, did I already tell you that I am an enormous foody, that I get extremely hangry and managed to successfully couple happiness to good food somewhere in my childhood? Let it be clear that I spent the first few weeks walking around with a couple of murder eyes that scared my partners to death.

Eeehm…

Aside from the physical side effects of my new diet, I also entered the two-month phase to which I lovingly refer as “The What The Fuck Do I Eat Now?! Phase”. Obviously, I knew it was going to be a challenge to survive on a low carb diet within our food culture. Almost everything we eat is mostly carbs –not to mention added sugars in meat– and especially finding a suitable lunch when eating out is simply impossible.

But I did not panic, I just had to start crowd sourcing! Thus, I started looking for food blogs, read all of the nutritional information on products and asked friends and acquaintances for advice. And this is how that went down:

Low-carb expert (enthusiastic): Don’t worry, it might seem tricky in the beginning, but all you really have to do is start your day with an omelette and vegetables! Totally delicious and surprisingly satiating.
Me: Ehm… I have an egg allergy.
Low-carb expert (slightly less enthusiastic): Oh. Well, just eat a big bowl of Greek yoghurt. That’s also full of protein and fat, you’ll need that anyway.
Me: Yeah… I’m not allowed to eat any dairy :/
Low-carb expert (worried): Oh.

Right… that’s tricky, indeed… eehm… oh, well, just eat a lot of nuts, right?
Me: That would literally kill me.

So… thát was a treasure hunt. My initial conclusion was that I could only eat vegetables (no fruit!), mushrooms, meat and fish. But after a long search and many experiments I am now living on tahini, soy yoghurt (the one without sugar), hummus, carrots, Atkins crackers, avocado, sausage, pickles and lots and lots of broccoli and cauliflower. And when my cravings for baked good become unbearable, I will indulge and slice up a pumpkin, bake the slices and tell myself they almost resemble sand cookies. Seriously, this is a thing ❤

When I discovered that I can also eat sugar free candy and chocolate with 99% cacao (in moderation), my quality of life improved significantly. And seriously, lying awake until 3 AM because cola zero is literally the only option next to water… I would not wish it upon my enemies. So, when I found out that there are light versions of tonic (and I can secretly mix myself a G&T), you could hear my sigh of relieve in Oslo.

So, it’s a diet…

Although I started this mess purely for medical reasons, I can’t deny that this eating pattern was designed to lose weight with relative ease. Or put differently, it is quite a challenge to eat enough calories. Which I noticed… I lost almost ten kilos in the last three months.

The pressure, especially for women, to be a certain size can be enormous and I can’t deny that these societal expectations have their influence on me. I am not unfamiliar with feeling insecure about the way I look and although I try to manage these thoughts in a healthy way, I definitely do not always succeed.

So, if I’m completely honest… I’m happy I lost some weight. I enjoy my improved confidence. I enjoy having less kilos to carry with me when I’m doing sports and I enjoy the significant improvement of my running abilities. I enjoy the many compliments about the way I look. And all of this motivates me when I just can’t anymore and want nothing more than quickly eat a cheese sandwich and get on with my day.

But at the same time, I realise that this focus on weight in our society is extremely destructive. And I wish my confidence was not so directly influenced by my body. But what I find most difficult is the way other respond and the assumption that losing weight is my main objective, even though it was never about that.

I don’t want to be the hyper-healthy-foody who is better than you, because I manage to lose weight. I honestly do not judge others because of the food they choose to eat and I definitely don’t think that everyone should eat like me. It’s a personal choice, for medical reasons and at the moment my only hope.

What about my skin?..

…because that’s what all of this was about. Well, the answer is actually twofold and before I go into details, I first want to explain what I mean when I say that my eczema is bothering me.

When I am talking about eczema, I am usually talking about the rash (the red skin with a different structure that is covered in small wounds), the allergic reactions and the enormous amount of inexplicable itchiness. However, another problem that is caused by the disease is the fact that my skin is utterly inapt in moisturizing itself, even the parts without the rash. Seriously, my skin is so dry it regularly cracks for no apparent reason. So, in the rest of this story I will distinguish between the eczema, the rashy parts, and the rest of my skin, extremely dry but otherwise healthy.

So, the first part of my answer is: Yes, my skin is a lot healthier and most of all… fat(ish). For example, the dessert-like phenomenon on my shins completely disappeared and the areas without eczema on my back genuinely feel like the skin of a baby. It is obvious that my body manages moisturizing a lot better and, whether it’s because of finally eating necessary nutrients or leaving out carbs, I even have pimples! Jep, that is something I celebrate. This means that my maintenance routine is considerably shorter because I don’t have to apply my basic creams as much as I used to.

On the other hand… the eczema itself did not improve at all. Although I did not measure this quantitatively, I would not be surprised if it’s even a bit worse than before. The impacted areas are just as large and just as irritated, allergic reactions are intense and the itch STILL FUCKING SUCKS!

So… am I calling this experiment a success? I don’t know. It is clear that this diet improves the overall health of my skin, but it just does not influence the disease at all. I’m still dependent on hormone creams, tar creams, bandage shirts… And the relieve I was hoping for? Never came.

Nevertheless, I am convinced that healthy skin is a good basis for disease management, albeit indirectly. Because let’s face it, even at the worst times my eczema covers at most 50% of my body and that leaves a lot of skin that I now have to care less for.

Because of that, right now, the large amount of energy that I am putting in surviving this diet is worth it. But the desperation about my eczema, the disease, is still very high. So, I need to find a solution. Fast.


Curious how this ends? Continue reading here!

Picture by Abel Planting, baked goods by Le Perron.

 

Carrying on

Lees post in het Nederlands.


Usually, the reason for me to start writing a blog post is because I need to vent. Writing is just a really good way to get rid of frustration. And well… let’s just say that recently I’ve been writing more than I care to. Actually, if I’m entirely honest, the last few years have been very tough, skin wise. There have been better and worse times, of course, but all in all the effect of eczema on my life is a lot more severe than, say, five years ago.

In the meantime, I put on a brave face and try to keep things under control. But even if I manage to stay focused for a few weeks and decimate my eczema with creams, the treatment and bandages are just as restrictive as the original problem. And that is extremely frustrating.

This is why it hit so hard when a relative made a remark about how incredibly persevering I am, all the time. Cause that’s kinda true, survival is my default state. And receiving his understanding and empathy felt really good. But even more so, it was eye-opening for me to realise that (this part of) life is just plain easier for others.

Because convincing myself every day that it Will Get Better, without any sign of improvement, just drains my energy. At the same time, constantly feeling sorry for myself or simply giving up is not going to make my life any easier.

Disclaimer: The point of view that feeling sorry for oneself is a bad idea, is the result of a well thought out cost-analysis. This is neither a reflection of the opinion, nor a realistic prediction of the emotional state of the writer of this piece. When meeting the writer in real life, or when interacting with another chronically ill individual, it is NOT recommended to provide this ‘comforting’ advise as reassurance.

So, I continue to invest energy in keeping courage and pushing through and ‘someday’. But I’ve been battling this illness for almost thirty years now and my experience and knowledge still prove to be insufficient to keep it under control… and well, frankly, desperation is near. And this desperation has made me more susceptible to taking other paths, because, well, there is no harm in trying, right?

That’s why, three months ago, I took the advice of a friend of mine who is a clinical nutritionist and started a new adventure. She recommended completely changing my eating habits to find out if that would improve my skin. Since dietary research is a topic I know little to nothing about, I’ll refrain from explaining how it could work. But that it’s possible for food to have an influence on your entire system, that I can get in to.

So now… I’m finding courage, again… surviving, again… a new journey, again… but this time I’m on a new path, holding a new map.

The plan? Low-carb (<100g per day), as little sugar as possible (so no fruits either), no dairy (noooooooooooo!!!!!) and plenty of protein and fat (especially fish oils). And yes, I am still allergic to eggs and nuts.

And I carry on.


This post is the first of a series. Continue reading here!

 

Trade-offs

In my field of biomedical imaging, we often talk about having to make trade-offs. The idea behind this concept is that reality is never perfect and you will always have to make choices between rocks and hard places.

When doing a heart scan, for example, there are a lot of requirements to take into account. Preferably, you would like to have as much detail as you can, so the resolution should be as high as possible. At the same time, you would like to have as much time frames as possible to give you enough temporal information. Also, you don’t want to put your patients in a large, noisy and claustrophobic MRI machine for too long. Sounds reasonable, right?

However, the problem is that it takes time to generate a high resolution image. Choosing a better image quality is definitely possible, but this will limit the maximum amount of frames and will force the patient to stay in the MRI machine for a longer period of time. Vice versa, you could choose to make the scanning time very short, but this means you don’t have enough time to scan in a high resolution or produce a lot of frames. In the end, as a biomedical researcher, you will have to choose what you think is the most important.

These kinds of decisions, of course, are not limited to technical problems, but arise everywhere in life. Although we like to think our choices are binary -good or bad, healthy or unhealthy-, almost nothing is! In fact, my favourite comedian wrote a song about this called ‘The Fence‘.

As you can imagine, eczema comes with its entirely unique and frustrating set of trade-offs. In fact, it can sometimes feel like I have to choose between being healthy, comfortable and sensible or uncomfortable, compromising my body… but happy. For example, going out and spending quality time with loved ones is basically a basic need. But other people don’t live in sterile homes, restaurants can be very dusty and pub owners have the horrible habit of supplying drunk people with peanuts. 

POISON EVERYWHERE!

Making the decision to prioritise not having a flare up over your temporary happiness sucks, but it gets even worse if you feel like you have to choose between two impossible options.

A clean house is paramount to good skin care, but cleaning a dusty room immediately triggers an allergic reaction.

Stress is the main cause for flare ups, so being unemployed is not the best situation to be in. Nor is writing perfect cover letters and hoping to get hired for jobs.

Sunshine is very good for my skin, it makes my skin much stronger and will help my wounds heal faster. So is tar ointment, except for the fact that it makes my skin extremely sensitive to UV. Like, go outside for 5 minutes and you are red. Oh, and the tiniest amount of sunburn will immediately trigger a flare up and of course increase the chances of skin cancer. The kicker? My skin is way too sensitive to stand sun screen. Seriously, I’ve tried all of the brands. Also, wearing too much layers when it’s hot out will make you sweaty, itchy and can cause an inflammatory response. But well… not covering yourself up when it’s 26 degrees Celcius and sunny… How the hell am I supposed to decide how to dress in summer?!

Of course the answer lies in balance. Much like a rope-dancer, the challenge for someone with a chronic illness is to figure out what is the right decision for you at this exact time, in this exact situation and for your exact state of body and mind. Of course you can’t reasonably decide to stay home every single time just because this is the safer option for your skin. Neither is it wise to throw caution in the wind and just stop cleaning altogether, have nothing else but pillow fights and adopt sixteen cats. Your decision has to be contextual.

But this can be quite difficult to grasp for people who are close to you. How do you explain to your good friend that you can’t attend their birthday because they have a cat, even though they know you spend the night at your parents house last week and they have two…? Or that you politely decline the allergy-proof food that they prepared specifically for you because you have a bad skin day and you prefer to skip dairy, but you just had ice cream together last week.

Well… you can start by writing a blog post about it 😉

 

We divide the world to stop us feeling frightened
Into wrong and into right and
Into black and into white and
Into real men and fairies
Into status quo and scary
Yeah we want the world binary
But it’s not that simple.

The Fence – Tim Minchin

Scratch that name

Two weeks ago my parents were complaining that I had apparently been keeping this blog more or less a secret. Which was not unfair.

I have been writing more or less frequently for about three years now and became a regular columnist at the magazine GAAF! about two years ago. Not something to be ashamed of, certainly. But somehow it had not really occurred to me to share the content of my work with friends and family. Luckily, this was not difficult to remedy; a facebook post definitely sufficed.

And the responses were great! Comments were nice, some family members were shocked that eczema has such a big impact on my life and people that I don’t know that well came up to me in person to tell me that they recognise themselves in my stories. So much validation!

Because of these conversations I decided to go a step further. I had been thinking about rebranding for a while now and even have some plans for expansion. And most importantly, I had been looking for a new name that’s more on-topic. I have been gravitating towards eczema and mental health topics and I wanted the design and name to reflect that.

So I got to work. I consulted my oracle for a good name, dove into the world of hosting and got myself an almost-perfect domain. This means that I stopped using Tumblr as my hosting service, although I will still be active there.

So without further ado, I present my new site: scratchthat.blog