Diagnosis

ADDISONS DISEASE - ADRENAL INSUFFICENCY - CORTISONE DEPENDENT

ADDISONS SJUKDOM - BINJUREBARKSVIKT - KORTISONBEROENDE

It's hard to say when it started. I probably had symptoms for years but they were hard to detect and understand. Fatigue can be many things right? Scars that didn't heal in a long time didn't really get my or anyone elses attention. Stress coping got worse, but hey, burn out is a trendy diagnosis? Exhaustion can be due to stress and no apetite, well.. she must have an eating disorder or perhaps she has gastritis from all the stress. Training started to go very badly, I didn't improve, I actually deterioated. Weight loss, well as stated, no apetite and she probably have an eating disorder and a bad relationship with food. Low blood pressure and salt cravings, wierd taste in the mouth (the cutlery started to taste like soap). Well that's probably nothing serious and it will pass if she rests. There's nothing wrong with her physically they said, it must all be in her head....

I went to the Doctor a few times. She stated stress, that I needed to rest and said that my blood work was fine. I was physically fine. That I couldn't make the stairs at work or at my apartment, that I couldn't eat without throwing up, that I'd lost ten kilos of weight and that I was ALWAYS tired was just due to stress. "You need to slow down" everyone said, "you need to rest and take better care of yourself" was a standard phrase I heard and I got scolded at for not treating myself properly at the same time as it was stated that I looked very good and pretty at my new weight and with my nice tan (it was winter in Sweden and I hadn't been abroad).

I was going more and more often to naprapaths and massage therapeuts. My muscles were aching and I had problems with muscle cramps. I scarred very easily, I had a mark on my shoulder from carrying a heavy shoulder bag that didn't go away for months, but at the time who would have made the connection. 

The salt cravings got worse and worse. Protein was hard to keep down but carbs with salt... the dream. Popcorn with salted butter, french fries, McDonalds, chips. It was the only thing I could keep down. At its worst I slept on the bathroom floor just to be near the toilet in case of vomiting. Not that I had anything to throw up at the end, I was all emaciated. 

A few months before diagnosis I fainted at my date's apartment. I had never fainted before in my entire life and I got really scared. I was so weak when I woke up, shaky and exhausted. I went to the emergency room the day after when I still felt as weak and shaky. They took a lot of tests. EKG/ECG, urine, blood, pregnancy tests. No results, nothing was wrong with me once again. A bit low in sodium but I wasn't really eating properly, right. Of course my blood pressure was a bit low too but it probably just came from my lack of salt and inproper food intake. So they sent me home with the advice to eat more salt, which sent my roomate through the roof since she had seen my nasty habits of salt intake and no longer ate the food I cooked due to that it was too salty. Yeah, and side note, I never had another date with that guy again. He ghosted me for a month after the fainting incident then dumped me. 

At one time my house Doctor wanted to perform a gastroscopy due to my stomach pain and no apetite but I declined. I was fairly sure I didn't have gastritis since I had experienced that before and this was not that. I'm very thankful today I turned that examination down, it could have sent me into an Addison crisis and killed me.

In February 2016 I got the flu. I was floored, now living alone, nothing was functioning at my home. Dishes were not made, no cleaning, no showering, no brushing my hair or grocery shopping, no nothing for a couple of weeks. I had a friend over once to shop and clean a bit for me otherwise I was stranded in bed and could barely get up so nothing got done. I was in some kind of delirium now and I didn't understand that my life was in danger or how sick I actually was. I just wanted to be left alone and sleep, at the same time I was experiencing night terrors and was really scared of being alone at night. Friends to my family got worried and called my parents who live about 20 miles from the city. They jumped in the car and went to pick me up. I've been told I was not a pretty sight when they arrived and they took me back home directly to the emergency room. I remember saying that I wanted to shower and clean myself up first but I couldnt make it. I just sat there in the shower on the floor and couldn't even get the energy to clean up. It was phsyically impossible.

The car ride (about 1 hour) was a nightmare cause I could barely sit up straight I was in such bad shape. I couldn't sit, I couldn't walk, I was barely concious. These are fuzzy memories but I think my Dad supported me/carried me inside and after some fuzz at the reception due to me being of age and not talking to them myself (my Mom tried to explain and get me in) they were reluctant to let us in at first. I remember walking (yes walking myself, probably a very nice zombielike walk) into the emergency room where FINALLY a male nurse said that "Wow you don't look so good, maybe you wanna lie down?" and got me a bed. I was at this time puking constantly but nothing came up, just air and I was looking very hot as I was mostly skin and bones with a large tuft of hair on one side of my head. Here however, thankfully, they very quickly determened and told me that I wasn't crazy and it was clearly something phsyically wrong with me and that they were going to help me. I cried. I can't describe it well enough so anyone that haven't been there can understand how horrible it is to be distrusted for YEARS in regards to your own body. There are no words. After a while you start believing what people are telling you. Maybe I am crazy? Maybe there is something very wrong with my mind. It's scary and very frustrating when you deep down feel a very strong sensation of something missing, something being physically wrong. So these very nice people telling me that I wasn't insane, insuring me that they were gonna help me, made me cry and I felt relieved.

I was so dried out that they had severe problems hooking me up to an IV. After assistance from the narcosis staff I finally got some fluids then had to move to a hospital closer to home for admission so again, another car ride. At arrival I got to ride in in a wheelchair and here is where the emergency call Doctor finally diagnosed me with Addisons disease and saved my life. It was a very close call and I'm forever thankful for his calm manners and professional approach. He called me a textbook example, yet noone before him had connected the dots. I was at the time just annoyed by all his questions of my relationship with food and if I had been abroad, again, all I wanted to do was sleep and be left alone due to fatigue. But after my treatment started and I could use my brain again he took the time to have long talks with me and answer all my 1000 questions that mostly touched base on everyday life like training, sunbathing, dosing and if I had any prohibitions. I wasn't so worried about dying as I was about quality of life. I was hospitalized for one week and the first days I got solu cortef injections which later was phased out to cortisone pills. The feeling of energy shooting back into your body after just one injection is indescribable. It was like getting pure life sent in to your blood stream. One injection, life, back. Amazing. I was of course (being me) bored like hell very quickly but even though I felt healed fast I was still very ill and in very bad shape so I had to stay for observation, information and tests, tests, tests.

The journey back has been LONG and getting dosages, medications, everyday life routines, training and work into place has been challenging to say the least and the work never ends. It's a never ending story to find balance, decrease stress and manage all the symtoms, risks and what-nots that Addisons brings to the table. I do however live a good life now and I've been a hard working student. A student of me. Symtoms, how to dose, stress management, triggers, training, food, supplements. I'm not gonna lie, it takes a lot of effort but it's all worth it when you have mostly good days and a strong, solid base to stand on. I still end up in lows from time to time but I haven't had any crisis since diagnosis. I've learned to say no, plan my time and foremost plan recovery. I still fail and fail again but every failure teaches me something about me and how my body works so I see failures as lessons and an information source which makes them somewhat a win anyway. 

Almost losing your life changes you, and it changes your perspective, but I believe this change is good. It might have come with losing some people in my life, with challenges to constantly battle and obstacles to overcome but it has also brought a lot of good. Like getting to know myself better, to get my priorities and values of life straight and to just let go a little bit of all the silly things that don't really matter in the end. Perspective. What is really important to you in life and why? When you've been there, with death breathing down your neck, the answer might surprise you.

//Kehlan