My Achalasia Story – or: “About the Foodie that couldn’t eat”

Being the daughter of a chef, and the eldest of three siblings, my life has been influenced a lot by really good food at our family table and during whatever kind of social event. As everyone else in my family, I cherish and love good food, the cooking of and eating it, of course. Food is such a social aspect in our lives. Living in a country in which social interaction usually takes place outside, in bars, cafés and restaurants, instead of within your own or your friends’ four walls, I am pretty used to eating out or having my coffee outside while working inside a tranquil café. I’d even say it’s nearly impossible to take part in social life if you don’t go out, here in this country. And I’m loving it! The quality – price ratio when it comes to eating out is really good here in Barcelona: when you know where to go, you can lead a really healthy, according to the Mediterranean diet, life style. And the produce of local origin is just unbeatable. So to sum it up: I love to eat – at home and outside. I love to eat good, prime quality food. I love to eat healthy.

When I was a teenager I’d eat loads and wouldn’t gain weight. This changed drastically almost overnight when in a timespan of 3 months I gained so much weight that I just didn’t know what went wrong. It turned out back then, that I was suffering, (as many of my generation, and some blame this on Chernobyl), from hypothyroidism, which resulted in a drastic gain of weight due to the fact that my thyroid gland wasn’t able to produce the adequate hormones the body needs for a correctly functioning metabolism. I never ate bad, unhealthy food. I have never been a fast food fan, except for a real authentic Italian pizza, some chocolates, or winegums once in a while. No diet would work. So I was upset accordingly.

All this changed in August 2009. I was 28 years old at that time. I had just moved to Barcelona, Spain, and my new partner (later to be wife) was currently travelling Canada. I was at home. Alone, when I suddenly experienced stabbing chest pains. My first thought was: ‘I’m 28 years old, I am alone and I am suffering from a heart attack. There’s no one nearby that could help me, and I can’t access a telephone.’ I dragged myself to the armchair, hoping for the best, and expecting the worst. A couple of horrifying & immensely painful hours went by, and finally the spasm-like pains seemed to disappear slowly. I was rocking back and forth. Not knowing what to do, crying in vain. I couldn’t think straight. After that experience I spoke to my partner about it, and decided to go and see a doctor. After a few medical respiratory tests, it was decided I had asthma. It didn’t feel right though.

Time passed by and the painful, heart attack like spasms and pain crises would become more frequent. They’d hit me out of nowhere, from behind, at night, in my sleep. I also started regurgitating food without wanting (at a table during a business dinner, or with friends, etc.). Sometimes waking up coughing my lungs out, because fluids, (and now I know that it’s been rests of undigested food) would run up my esophagus and into my lungs. I have always suffered from a lot of respiratory illnesses (including three times pneumonia up until now) – now I know why. During the next year I’ve suffered these increasing pain attacks, and they finally paired up with not being able to eat. By November 2010 I had already lost about 10kg. Sometimes – while eating – I would just turn reddish and pale at the same time, with my eyes almost bursting out of my skull, trying to swallow food that had gotten stuck in my throat. I went to see my GP again, and she still insisted on me suffering from asthma. I asked for an endoscopy and her answer was that I ‘was too young’ to suffer from a disease of the upper digestive apparatus. My answer was: ‘Well, I can breathe, but I can’t eat!’ Then one day in December that same year, I just couldn’t eat or drink anything anymore. For five long days. And I ended up in the emergency room of a private hospital where they finally ran the necessary test. After the endoscopy, they suspected a rare disease (that only occurs in 1 out of 100,000) called Achalasia. My private health insurance, upon finding out about the suspicion the specialists had (no confirmed diagnosis up to that point!), refused paying for the medical test and cancelled my health insurance with them immediately. So I was depending on the Spanish State Health Care System again. I was able to change my GP (stating a language barrier as the reason, which wasn’t the real reason at all, but I knew if I gave them my real reason they wouldn’t have accepted it). The suspected rare disease had yet to be confirmed by a barium swallow (in which the patient has to swallow contrast gel while being constantly x-rayed – it’s like a x-ray movie, and I believe I glow everytime after having it), and through a very painful test called manometry, which measures the pressure of the esophageal function (peristalsis).

X-Ray Momentum of my Barium Swallow (pre-surgery)

Soon Achalasia was confirmed and I sort of felt betrayed: having a rare disease is like a nightmare-like lottery win.

First of all it’s rare: as a patient you are like a guinea pig and doctors rarely ever heard about your rare condition, and if they did, it’s been treated in one of their lectures without focussing on it. A rare disease is not cancer (I want to indicate at this point that I am not comparing Achalasia with cancer here; I am not saying one is worse than the other, nor anything similar). It doesn’t have a lobby. So there’s almost no investigation, (and almost no specialists), due to the lack of funding. Then no one can tell you what to do and how to deal with it. Turns out that for almost every Achalasian, although they suffer from the same symptoms, other remedies work (it seems like each and every Achalasia patient has their own ways of dealing with eating and spasms, etc). What might alleviate one, will make the next one worse. Then you can have some treatments to improve your life and eating quality, but there is no cure, and treatments are sometimes more and other times less successful. In my case I’ve had surgery (the Heller Myotomy with a Dor Fundoplication), and since that one didn’t make it better, they also did a balloon dilatation of the esophagus. By the time of the Heller Myotomy I had almost lost 30kg. Due to the first surgery, and the accordingly developed scar tissue on my esophagus, the posterior dilatation wasn’t successful as they couldn’t dilate much (in order to prevent me from suffering the life-threatening risk of perforation). Now I take some medication, (that is not specifically for Achalasia, but relaxes the nerves and therefore might soothe the muscle spasms), from time to time when I get these pain crises and my esophagus closes up completely, leaving me unable to eat for a couple of days. Usually this type of medication provokes that I am unable to function in my all-day-life. It makes me super tired and I feel like in a daze.

X-Ray Momentum of my Barium Swallow (post-surgery – unsuccessful Heller Myotomy)

So how do I live now? What is life like for an Achalasian? I try to eat whatever I like to eat. I know, I can’t eat a lot of things (like red meat, rice, acidic foods, fibres, fruits, raw veggies and salads, etc. – the list is long). Easier are: cakes, cream tarts, pudding, bland foods, soups, etc. Every time I am eating, the food piles up in my esophagus and I try to push as much of it down as possible with the help of drinking up to 2l / meal of water at room-temperature (cold or warm water, and drastic temperature changes can cause the earlier described painful spasms) directly after an eating period. I basically feel when I need to drink – I’d throw up otherwise. Just imagine having something stuck in your throat. Your first and most normal physical reaction would be to throw up. It’s a bodily function. With Achalasia throwing up is not that easy anymore. At the end of each day, before I go to bed, and in order to prevent rests of food from flowing up into my lungs (reflux), where they could cause serious infections (even pneumonia) and other diseases, I throw up. I don’t throw up stomach contents since the LES (the entrance to my stomach, or also known as Lower Esophageal Sphincter) is closed off. This is why my esophagus looks like a glass of sparkling wine: wide at the beginning and sort of very narrow when it comes to entering the stomach. Sometimes I throw up in the middle of meals. Imagine what kind of image this causes during your lunch break at your work or business dinners! I’ve been asked if I had bulimia and anorexia by the braver ones, but the cowards would bull-eye me when they thought I didn’t realise and then look away. Can you imagine what kind of pressure this puts on you in your working and social life? Can you understand the impact this has? Even if you’re dealing with the situation, there might be others that start spreading rumours about you, that might have a negative impact on your career. People that you considered trustworthy suddenly turn away from you in social relationships.

Throwing up usually causes me spasms. If my stomach entrance is forced open through the force of throwing up (which happens once a week more or less), I will suffer from very vile spasms the whole night and during the next day. Sometimes I get spasms out of nowhere. If I catch them on time I find relief in drinking small sips of water at room temperature. I always carry a water bottle with me. For me it’s life saving medicine. It’s a matter of life and death because one spasm can intensify in such a way that I pass out and won’t get rid of it for days, having to go to hospital and worst case scenario: being ‘force-fed’ (something I want to avoid at all costs). I always carry my certified GP’s letter with me that specifies that I have to carry my bottle of water with me (even through security checks at airports and in other situations). I can only recommend getting such a letter if you suffer from Achalasia and know that water helps you. It’s widely accepted and most airports (especially international ones) are equipped with liquid testing machines.

I only go to restaurants that I know serve big jugs or sell big bottles of water. Usually I drink the water right out of the bottle as this helps me, because the pressure on the food in my esophagus is bigger than the one from a small glass of water. Plus I can drink a bigger amount of water at once. The eating success rate is higher that way. So water helps me eat and deal with my spasms. Whenever restaurant staff doesn’t understand my short explanation (‘I have a rare swallowing disease which prevents me from being able to eat food and swallow it accordingly. This is why I ask you to bring me at least 2l of water at room temperature. Thank you!’), I leave. I have no other choice as most places don’t accept it if their guest takes out their own bottle of water.

When it comes to medication, I take Buscapina and Adalat (in that order), if water fails to help. I try not to take Diazepam as it is just a very drastic drug to take in my opinion, but sometimes – during very bad days – I have no other choice.

So basically I eat whatever I like to eat (I know my body very well by now and usually know very well what it can handle). I still love food and I refuse to give up my love for food and my passion for cooking. I love writing my little food blog (although I must admit that I have been kind of lazy recently, but that has been due to other events in my life), and to post my foodscapades on Instagram every week (I tried eating 95% of what you can see in my pictures – except for when it comes to things my partner had and I don’t like – and I assume I actually swallow 75% of what I post on Instagram). Good food is a luxury good for me that makes me happy. I don’t depend on it, but I cherish it because I know the better I eat, the healthier I am. I like to pig out, and I like it even more when knowing that the ingredients are of km 0 (local) and organic origin, and that they were prepared with the utmost care, attention to detail and love. Ingredients that no cook should ever underestimate in my humble opinion.

My love and passion for good food also helps me overcome the other side effects of suffering from a rare illness (that no patient, doctor, therapist, partner, friend, family member, employer, colleague or bystander) should ever underestimate: suffering from depression, PTSD and anxiety due to Achalasia and my three herniated discs, plus the resulting sciatica. I know now that during a very long time I pushed myself and my body to its limits, and its natural reaction was to collapse (the result was me being unable to walk, sit, and stand up during almost 6 months last year). A very busy work schedule, an unfortunate work situation in general, paired with unhealthy eating at work, during business trips and business dinners, lead to the ultimate blow-up 1 year and 9 months ago.

My life has changed so much since then: I had no choice but to listen to my body and my deteriorating health. I had to drastically stop all I was used to, calm down, rest and reconsider all the choices I had made up until that point. I left a career, which I mostly liked, behind, started working regaining my ability to move and walk through physiotherapy and holistic health therapies (like acupuncture, auriculotherapy, kinesiology, Psych-K®, Reiki, homeopathy, Bach flowers & reflexology), started eating healthy and consciously, and tried to push through a morphine, Lyrica and Xeristar withdrawal which I had been taking almost for a year due to the elevated pain level and to the nerve regenerating side effects of the latter. It is unnecessary to mention that the combination between the spine problem and Achalasia have been quite a challenge. Throwing up is not funny – especially when it comes with such a force – when you have serious back pain. I don’t want to go too much into the back issue though.

What I want to underline with telling you a bit about my last year is that alternative (holistic) health therapies really worked for me (regarding Achalasia, the back problem and psychological challenges I am facing), and that it was so helpful to change my life even if I am at a point now at which I don’t know into which direction to turn into (professionally and personally), since I am far from being fine on one side but am also that clear again, that I have the wish to start something new. Something which has to be adapted to my physical needs, of course. I will never work a stressful job again. I won’t be able to work in a position that requires to be sitting or standing up most of the usual 8h and more working day. I can’t work in a job which doesn’t give me time to eat, (because I obviously need more time to eat than people without a digestive illness do), or which doesn’t accept that I have to go to hospital and doctors’ appointments much more often than the average employee. My work place needs to be able to accept my by the Spanish State acknowledged and certified disability, and that I will have surgery again. All these things are obstacles in the working world and aren’t very attracting to possible employers. So at the moment I am re-thinking, reconsidering my options and what I could and would want to achieve. I am sure I have a lot of things to offer (things I don’t want to specify here since this blog post is about Achalasia, and not about trying to find my perfect job).

I want to tell everyone that suffers from a permanent (rare or not rare) disease, to reconsider your life, the options you have (when it comes to the way you live your life, you eat, you exercise, your work life and personal life, your chosen therapies). It’s always good to explore new possibilities. And: if like me you suffer from a rare, incurable illness, the first step towards a happier life is acceptance. I don’t mean that you shouldn’t fight for raising awareness and following up new therapy options and the general research. No. What I mean is that; even if it takes a long time and is much easier said than actually done; the goal is to accept yourself and your body. I am currently at a point at which I manage to do that sometimes. There are other moments in which I am just mad and frustrated and sad. This is why it is also important to never underestimate the side effects that come with a physical disease, such as depression, anxiety, etc.

Finally to the people that are not ill: the worst you can tell a person that struggles with being ill, permanently ill, or even suffers from a rare, incurable disease, is to tell them to suck it up, that there are people worse off or – the worst – that they are just making it up. Every single one of us has their own burden to carry. If you cherish the person in front of you, you should never forget to acknowledge that. If you don’t understand what they are going through, you should ask them. And don’t forget to ask them from time to time how they are, if you really care for them – as you should do with every other human being you care about. When they cancel on you, don’t be mad at them if they do it last minute: it might mean they’re having a really bad day and they just don’t want to bother you with long, painful explanations. If they come to work looking as if they had partied all night, don’t make that stupid joke! Maybe they couldn’t sleep all night long due to their illness and summoned all strength in order to lead a normal life and to show up for work as everyone else. Try to look beyond and to understand that life with an illness – rare or common, permanent or temporary, curable or incurable – is already a challenge: ill people always run into misunderstandings, are judged negatively, suffer prejudice at work and in social life, and the according disadvantages and discrimination. And those are just the secondary challenges. The first one is always: they are the first ones that have to deal with this. Not you, not a doctor, a partner, or whoever. The patient is always the first one to experience an illness and this should be acknowledged and their story shouldn’t be questioned.

So this is my story. This is why (good) food is much more important to me than to a person that can eat normally. You don’t understand what kind of importance one apparantly normal thing has until you can’t do it anymore. Especially if it is something you need in order to survive. I want to ask every reader to cherish what they are eating. To be grateful that they can eat it, and to eat every bite of their meal consciously. It’ll create a much healthier approach to food inside yourself and will make you enjoy eating! And eating good food is love, and love makes you happy. Don’t forget that!

Thank you for reading.

A little list of useful links regarding Achalasia:

International:

Acalasia, Achalasie, Achalasy, Achalasia (closed Facebook group)

For English Speakers:

Martin Mueller IV Achalasia Awareness Foundation, Inc. (Facebook)

Achalasia Awareness Organization (Facebook)

Achalasia Research UK (Facebook)

Achalasia (closed Facebook group)

Achalasia Support Group (closed Facebook group)

Achalasie Forum (English version)

For German Speakers:

ARC (Achalasia Risk Consortium)

Achalasie.de

Achalasie Forum

Achalasie – Betroffene in Deutschland (closed Facebook group)

Achalasie-Austausch-Gruppe (closed Facebook group)

For Spanish Speakers:

Gente con ACALASIA y otros desordenes del esofago

Acalasia