Hello.
This post is somewhat special in terms of having no or very little musical content. I just want to talk about something personal that's been on my mind for a long time that I haven't shared with anyone except a handfull few. I think it's time to come clean about it.
DISH - Forestier's Disease!!! Familiar with that? No??? OK, that's what I thought. I wasn't either until I was diagnosed with the disease in late 2022. I don't like to talk about health related issues because that's not very rock ‘n’ roll. Besides, it's boring and people do not want to listen to a person complaining about shit like that. To a certain point, I agree so this will be the only post I will ever write and share about the topic. But WHY do I want to write about this thing called DISH? I often meet people on the street or at the supermarket and elsewhere and they always ask: Hey Alf, whazz up, you look pretty stiff today?? My answer is always “Yea, you know, it's just the gout giving me a hard time again". They accept it as a good answer. In the ”beginning" when people started noticing my “defects” and were asking me, I tried to explain the disease as what it is but they got bored within a minute and changed the subject so I had to come up with a simpler explanation for later encounters. The explanation simply became GOUT. That's not far from the truth but there's way more to it than that so let's get into it. I thought my artist website would be the best place for posting.
Diffuse Idiopathic Skeletal Hyperostosis - DISH aka Forestier's Disease.
*THE EARLY SYMPTOMS…
Since I was in my mid 20's and up until I reached my 40's, I suffered several returning back prolapses. I don't know exactly how many but there was a whole bunch of them and I'm not even sure they were all back prolapses. Some of them were bad enough but some of them almost put me six feet under. I'm not kidding, that's how bad they were. I had those breakdowns at least once a year between 1995 and 2017. Sometimes twice a year then they stopped. I call them “breakdowns” because that's exactly what they were and felt like. I thought it was a bit strange because I was relatively young and none of my friends at my age had issues like that. In the years that followed I went to see several different doctors but they were all less interested in what I was dealing with and (excuse me) highly incompetent and thought I was mostly acting and just wanted a sick leave or something. I told them I wanted to know what was wrong with me and I wasn't there for a sick leave. They had no idea how to treat me and/or what to look for. Go home and take some painkillers and your symptoms will probably soon go away. That's the message I got.
*NIGHTS WITHOUT DREAMS…
After a while I noticed a deterioration in my conditions. This must have been sometime between 2014 and 2015. I was dealing with sleep disorder or lack of sleep because of extreme back pains at night. I just couldn't get enough quality sleep and sometimes I almost passed out from exhaustion because of that. I remember the pounding headaches and extreme sweating. Only three, maybe four hours of sleep at the most each night and perhaps twenty minutes here and there in between hours if I was lucky. There were weeks and months where I can't recall having any dreams at all. Just a thick dark fog before my eyes. Sometimes I thought I was not going to make it. The doctors recommendations on painkillers didn't do any good for me so when the pain was at it's worst I used to down two or maybe three LARGE glasses of single malt or Cognac and wait for 30 minutes to see how it worked and it did. My living room recliner became my favorite spot for those activities. I actually believe that big, ugly, stinky and dirty grey chair saved my life more than once. I kept it a secret until now. 2014 was also the year I frequently started visiting hospitals for MRI and X-RAY examinations but they found nothing but a couple of old and dried up prolapses. I went through at least 6 examinations here i Norway but they found nothing of interest. 2014 was also the year when my mother passed away so it was truly a dark year.
*MY WORK PLACE…
The deterioration got even worse with time and I didn't do very well at work. I was a health worker for 10 years taking care of people with drug related issues combined with mental disorders. Work was not the right place for me to be at that time but what was I supposed to do?! I needed a steady income like anybody else. This was around July 2018 and I was back at work again after a long-term sick leave lasting from November 17, 2017 to June 1. 2018. By then the “classic” DISH stiffness had developed fiercely over the years and even the simplest things were becoming hard to manage. Still battling sleep disorder, I was having a hard time getting out of bed and be headed off to work in the morning. Sometimes I couldn't and I had to call in the sick. Not very popular at work because I was needed there. Countless times I was completely unable to put my socks on until a couple of hours after I was out of bed. Getting out of bed was also very problematic. The morning stiffness was so bad it sometimes took me over half an hour just to prepare myself for the job. I had to slooowly roll over on my left side, sloooowly get up on my knees, stretch a bit and slooooowly crawl backwards out of bed. It was impossible for me to sit straight up and walk out of bed. It continued like that for another one and a half year. I was becoming completely dysfunctional. The stiffness and pain was terrible and so in 2020 I hit the brick wall. I often fell asleep in a chair or a sofa at work. I just couldn't keep my eyes open. I was pretty ashamed of myself but my colleagues knew I was struggling with something so they weren't bothering me with it. They were great and my boss was just phenomenal. She knew I was dealing with a broken back so she confronted me with it in a most professional way. She said; Alf, I think it's time you start taking care of your health and I knew she was right. I couldn't work there anymore. It became impossible and I realized I wouldn't be going back any time soon if ever. I lost my job of course, my colleagues and my wage was cut in half as I ended up on welfare. It was not the happiest of times in my life to say it least. In all that misery of mine, I had started dating a girl the year before who would later on become my wife. It was all crazy and I kept on rolling on pure iron will. Until this day, I don't know how she managed to put up with me.
*THE LIGHT IN THE END OF THE TUNNEL…
It wasn't just my back that was hurting. My DISH had spread to my hips, shoulders, neck and, believe it or not, my chest. It was like a cancer growing underneath and around my chest bone. There were a number of things I couldn't do anymore like walking in stairs, go for short walks, sitting in car seats longer than 20 minutes, getting in and out of cars, turning my head from one side to the other because of stiffness in my neck, lying flat out on the floor trying to get up without help and my toilet visits was……….. Well, you don't even want to know. My girlfriend (now my wife) forced me (in a good way) to contact a physiotherapist and I did. At that time I was almost walking chair-ready and I guess she noticed. I visited my physiotherapist regularly for about year or so and she was really helpful and utterly professional. She also understood was I was dealing with. She made me get up on my feet and walk properly again. She had many clients visiting her but she once told me I was the stiffest person she had ever treated. My girlfriend (still my wife) also had other plans for me. She is Polish so she made an appointment for me at a center for rheumatic diseases in Gdansk where I would undergo accurate examinations since Norwegian doctors was unable to figure out my physical ailments. When I got to CENTRUM MEDYCZNE ZDROWY in Gdansk, the doctor had a quick look at me and approximately 5 minutes later she said; Alf, I think I know what's wrong with you and it's called DISH but I need to perform a few more tests on you to be sure. All of a sudden there was this light in the end of the tunnel. I visited CENTRUM MEDYCZNE ZDROWY several times after that first visit for x-rays and more tests but after the third trip, when the results of the x-rays were laid on the table, the doctor was absolutely sure. Alf, she said; do you see those white lines going up and down along your spine? Yes, I said. Well, she said, they're not supposed to be there and they're everywhere. It's DISH, also know as Forestier's Disease. Thanks to Doc. Gałecka, I now have a diagnosis. I doubt it would have ever happened if I didn't go to Gdansk.
*THE AFTERMATH…
The fight wasn't over just because I received the diagnosis from the doctor in Poland. Oh no, it turned out it wasn't that easy. Norwegian doctors and the welfare state (NAV) are hard to convince. They're like; if they don't understand something and you can't provide them with hard evidence from doctors and specialists in Norway, then it can't be true and it's you making it up or imagining things. Yes, they tried that method on me but they didn't get through with it. After my DISH diagnosis was confirmed in Gdansk, they had to listen and take me more seriously. After a couple of heated rounds in the ring with NAV, they had to admit that I had become a victim for DISH. They couldn't deny the facts anymore. It was a triumph for me. Unfortunately, I've heard stories of persons who were screwed big time because they weren't as fortunate as I was. I honestly believe there could be thousands of people around the world carrying the DISH disease without knowing they are. They just know something is completely out of tune with their health and they're not feeling well. They're experiencing the same pain, stiffness, sleep disorder, exhaustion and difficulties as I have experienced but their doctors haven't even heard about a state of illness called DISH so they don't know what they should be looking for. They jump the nearest conclusion saying it's Bechterew's Disease or some other obscure illness which it is not. DISH is rare and different and chances are you will never get the right treatment if your doctors sets the wrong diagnosis. It would be like changing a kneecap when it's the cervical vertebra C3 that is the problem.
*PRESENT DAY - NOV. 2025…
So what about now? Well, I'm feeling better than in years. I'm not in a band anymore and I haven't been since 2015. I've tried a couple of times after I gave up touring and performing LIVE but it just wouldn't work. It's all because of fucking DISH. The stiffness is still there but the pain isn't nearly as brutally horrific as it used to be. I think I can live with that. I'm not on daily medication and my single malt/cognac days are over. Well, I must admit, I do like a few single malts and cognacs in good company with friends though. Maybe a good cigar as well. I love to travel and be visiting historical places but I have to be careful and not be pushing it too far. I can move easily and I can do stuff but I have to avoid heavy lifting, long demanding walks and hard work in general. Pushing the limits is not a good idea for people with DISH. You will have to pay for it sooner than later. Yes, and I have a lovely and most caring beautiful wife, a super duper son, a small but close circle of really good friends, food on the table and I have music. Lots of music. Yea, and I almost forgot Orion, our most beloved Breton Spaniel. That's all I need and if that ain't luckydom, I don't know what is.
*THANK YOU FOR READING…
Thank you for reading all this. I don't want people to feel sorry for me. That's not the purpose with this post. In fact, I don't like being pitied at all so please don't! This post is about raising awareness around a disease that's rare and very little known but is turning people's lifes into a mess of pain and suffering. I remember being briefed about a 24 year old girl from Poland. She had been diagnosed with DISH shortly before I arrived and she was wheelchair bound. 24 years old, my God. That's what DISH can do to you? I wonder if she is still alive because I really want to meet her. Anyways, thanks again for reading.
Check out the links below and get an insight in the DISH - Forestier's Disease.
DISH - Forestier's Disease explained.
https://www.arthritis.org/diseases/diffuse-idiopathic-skeletal-hyperostosis
Zdrowy Profil Medical Centre - Gdansk, Poland.
https://zdrowyprofil.pl/
