Parts Of The Road To Finding My Disease
A few years ago I was sat on the sofa watching a top twenty-five of the best auditions worldwide on the telly and little did I know I'd hear the voice of a strong woman that would come to support me in the toughest times of my life. I immediately went online and bought her album Heaven. One year later I found myself in a clinic, having doctors and other professionals throwing different diagnoses at me as if they were on sale. That's why I had the lyrics of Run Free stuck to the door of my wardrobe closet, so every morning when I'd get up to get dressed I had a reminder everything was going to play out and I would find what's important to me and find what makes me happy.
Instead of making a video, I'm writing down my story. English isn't my first language, as I'm Dutch, so I'm a little awkward and nervous speaking it. The lovely Rebecca invited me to tell my story, but unfortunately in this case I live in The Netherlands, so I couldn't make it. Nevertheless I'm so honoured to share my story with you.
Next Monday I'm going to be twenty-five years old and to be honest, I'm having a hard time wanting to celebrate it. Almost every hour of the day I have to remind myself I'm worth it, I've come so far. I deserve everything good in life, and I'll be able to handle all the bad that may come across. While I'm writing these words down to assure myself, I hope you, the one reading this, are hearing it, too.
When I was just a little child I would be fine on my own. I loved playing with my classmates and friends, but I could spend hours all by myself in my bedroom, too. Reading books, colouring and painting, and even write my own little tales to disappear in a fantasy world where everyone was happy and safe.
My parents have had it hard and rough with my oldest younger brother. He was early diagnosed with Attention Deficit Hyperactivity Disorder and was told he wouldn't be able to even finish primary school, so my parents made sure he got the best help they could afford and he would. Thank God he did, and even better yet. He not only finished primary school, he also graduated high school and is now following his dreams attending a music school, playing as a drummer in not one, but two bands.
Although it already did take a huge toll on my youngest brother and me, we would get bullied for having a "strange" brother at school. Later I would get bullied for being "fat", too; looking back and seeing old photos I never was.
In my last year on primary school I would often get ill, had to miss out on a lot of fun stuff, which bummed me out. For some reason things changed that year. We grew stronger and all became friends, teachers told us it was amazing to witness. All of that makes me look back with a smile.
High school was a horrible time for me. From being late on the first day to being officially excused from attending the last few weeks of my third year on the first school, then surviving my last year on the second, in a totally different town. All because of bullying. I still don't know why to this day, but it ended up with rumours being spread across a few towns that I would've tried to kill myself. Parents of other kids, attending different schools, would walk up to my mum at the supermarket asking her if I was doing okay. That was exactly the reason why I was excused by officials, it was a terrible experience.
This all resulted in me being home more ill than before. Not even school sick, like being nauseous and having headaches, but actually being incapable of doing anything. One time I was sleeping so deeply, I didn't hear my mum knocking on my bedroom door and being all hysteric, because I had locked it. She had to call my dad home from work and he kicked the door out. I was so intensely tired, indescribable. What I remember from that evening was that both my parents woke me up and I started crying, because I had fallen asleep while I still had to make my homework for my geography class. Now looking back, that was ridiculous.
Also looking back through my medical records, I visited our general practitioner multiple times. Each time he told me he couldn't do anything for me, that it was just the normal stress from high school. He did send me to a social worker to talk about the bullying that had happened. So I even ended up getting Eye Movement Desensitisation and Reprocessing therapy, talking about traumatic moments I could hardly remember, till I wasn't sure what I remembered.
After high school I didn't really know what I wanted to become, but I did know I would want to help people, and so I signed in on an education that had five directions you could choose from in your second year; roughly said a choice between class assistant, social work or working with mentally as well physically challenged people.
Things were going so well for me at this school. I really had a great time, made new friends and could finally be myself again. At the end of my first year I remember crying at my evaluation, because my mentor had asked me what I had learnt that year and I answered: "I found me again".
Unfortunately the second year wasn't going to be easy. My second internship was at a daycare for elderly and I can still remember the moment I "collapsed". We were water colouring Autumn leaves for on the theme board in the common room. Out of nowhere I felt I broke on the inside, I just wanted to cry my eyes out and for my mum to be there. Somehow I managed to get up and walk to the staff room to sit down for a few moments, to then once again force a smile on my face and pretend everything was okay.
But I wasn't. I was far from okay. At first my parents brought me to and picked me up at my internship because it was convenient, but soon it happened because "they had to". All day long I would give everything I had, to then at the end of the day walk up to the car with heavy legs and sit down, without being able to speak. I just couldn't bring myself to move my lips. So just like in high school I would do everything I had to succeed outside the house, to then make my homework and go to bed, sometimes without having dinner, because I just couldn't stay awake.
On my next evaluation I knew it wasn't going to be a good one. My school mentor came to my internship for the chat and just like my parents they were worried about me. In all honesty I later told my mentor I couldn't even write my stories anymore, something I had shared with her as the one thing I absolutely loved to do. She then advised me to quit school, which I did with a stinging pain in my heart, because I found what I loved doing for a job finally, too.
After a year being stuck at home, not feeling that much better, I was done. My general practitioner told me I had a burnout, so I thought a few months of rest would be good enough for me, then. I had felt so useless, so I contacted my mentor I wanted to come back to school. She put in a good word for me in a conversation with the school staff and so I got signed in again. Once again I was determined to succeed, I was going to do them proud, not just me. They had faith in me, so I had, too.
I found an internship I loved even better than the ones before, I got to work with as well mentally as physically challenged children at a daycare and half a year later with adults at their home, in a little "village" build just for them. Even though I loved it, I had start calling in ill more than I wanted to. Luckily I had the best mentor at my last internship, because somehow she felt my pain and saw me struggle, without making it obvious, so I felt really comfortable working with her. When I was struck with a pneumonia I didn't want to stay home - again, but she told me: "nothing of that, you're staying in bed". Sweet as she was, she even offered to make my projects for me; I always declined, but I will never forget her kind words.
One day at the home, having brought the clients to their daycare and starting on my schoolwork, I got a phone call. It was from my new school mentor, telling me my first school mentor had passed away; she was diabetic, got a hypo and drowned in the bathtub. My internship mentor excused me for the day, but I wanted to stay to get my mind off of it. Later back home it hit me hard; someone so kind and loving, so full of life, and most important to me, still believing in my, even though I wasn't her pupil anymore, just vanished like that. Just because of that I wanted to push back harder, wanted to fight twice as hard whatever was going on, but I was all spent. I gave it my all, but it wasn't enough and for a second time I had to quit school.
Sat in the chair at my general practitioner again I begged for him to send me to a clinic. Every time things were going well for me, it slipped through my fingers. My body just kept breaking down on me. At times I was even scared I was doing it all to myself, that something in my brain was making it all up. So I begged, because either way I needed help.
The general practitioner prescribed me antidepressants while I had to wait on the list for the clinic, to lift my mood and hopefully shut off all the sounds I couldn't bear hearing anymore. Every little sound sounded so much harder than they actually were and my ears wouldn't stop ringing. Unfortunately the antidepressants gave me the worst nightmares. People were getting abducted, chased, killed or raped; it was better not to sleep. Sometimes I would dream so livid I had to ask my family what was real and wasn't. After like five or six weeks I gave up, that creepy shit wasn't working for me.
I had to wait a few weeks, but then got into a clinic. There I stayed from Monday to Friday. Being told I was shy, I was quite nervous the first day. One of the counsellors slash supervisors asked if I needed his help meeting the other people and I thought I did, but soon realised I didn't. That was an eye-opener. It was the first step to believing in me, believing my own thoughts and not the ones other people were putting there. Who ever decided I was weak?
The days there went by very quickly and I know it must sounds weird, but I had the best time there. I learnt so much about myself, grew stronger in my faith and that was only the beginning.
They checked a lot of stuff. Mostly mentally, unfortunately. I got diagnosed with Autism, A.D.H.D. as well, and Post Traumatic Stress Disorder. Once again I asked the people why, that I didn't understand why I was so immensely tired, but they didn't have the answer. Some of them tried to explain it away with "you've got so much on your plate to deal with", but that wasn't it; I never thought of it as much to deal with, anyway.
Each morning I had trouble getting out of bed, feeling like I hadn't slept enough hours, if I was lucky to have slept at all, even with the prescribed melatonin. I forced myself to participate the program the clinic had for us, even added extra hours of sport with one of he caretakers. He was surprised that with the lack of energy I had, how easy it was for me to move. That's just it, I gained weight through the years because I didn't eat and slept a lot, not because I was lazy.
Once again I gave it my all, I wanted to fight whatever I was fighting. I tried to believe the diagnoses I had gotten and ignore any signal my body was giving me; it wasn't there, it was all in my head, right?
The day I left I took down the laminated lyrics of Run Free from my wardrobe closet. I went over to a friend of mine at the clinic. She has been there for months and still wasn't done with her treatment. I handed it over to her and just like me she got tears in her eyes reading it for the first time. She was ever so thankful and gave me the biggest hug. Just like me she was going to hang it up to see it every day there.
Back home I continued the E.M.D.R. therapy I was once given years ago. According to the counsellors at the clinic I hadn't processed all of the bullying yet. I even went to the police station to report the school for not protecting me, to get "closure". They also gave me lessons in Autism and how it all works.
Eventually they wanted me to talk about that by then both my younger brothers were diagnosed with A.D.H.D. and that my youngest brother tried taking his own life. That was what the hospital wrote down, not what actually happened. My brothers got medicated with Ritalin, which worked great for my oldest younger brother, but not for our younger. He got so depressed, because it numbed all his feelings, so they gave him antidepressants when he was a teen; one day he'd had enough and took it all, not to kill himself, but to make it all stop. When he didn't feel okay, he alarmed everyone else in the house and we rushed to the hospital.
Don't get me wrong, therapy can be a treasure of help when you need it, when you want to talk and maybe even when you don't. It's good to get it all out. But by then I've went over and over things and it drove me crazy. All I wanted was to move forward, get myself going again as I didn't feel my pain and struggle were hidden somewhere in my passed. I've tried their ways, I truly did, but it got me nowhere.
Nothing helped. The weight wasn't lifted from my shoulders and all the puzzle pieces didn't fit, it didn't do anything for me, really. Was it because I was doubtful? So I forced myself to deal with was given as facts; this was it, this was what's going to be my life from now on.
That was three years ago now. I still remember the feeling of being so lost, being so disconnected from myself. I felt like my body, personality and soul were split apart from each other. My frustration grew and I lost it often. Little things that went wrong would bring me down hard, but sometimes even crying took too much energy out of me.
Simple things like going to see a film with my friends began to take too much effort. I would look forward to it, it would be the highlight of my ever so boring week of staying at home in bed, but the night before I would cry myself to sleep. Cry, because I didn't know how I was going to be able to take a shower, to get dressed, put on make-up and do my hair, walk to the train station... Whenever my parents could drop me off at the train station I would be so thankful, because it would make my evening so much easier, it would save so much energy.
At the same time I was still being so hard on myself. I still tried looking into other schools, because I didn't want to let my parents down. They were still hopeful for me, hoping that the diagnoses I had gotten were eventually going to sink in and I would start being my old self again. Even though I felt it wasn't going to, I still did try to keep my act up. Fake a smile and go.
In April that year I went to see Rebecca Ferguson and that was the start of a change, now looking back on it. I saw her with my mum and friends I made at the clinic and we had a wonderful evening. Their support act Daughters of Davis got to me with their songs. They sounded so full of joy and happiness singing about their faith.
So I met the lovely girls after the show, bought their album and had a nice chat. I remember I even felt comfortable enough to take off my shoes that were killing me, haha.
I can't exactly remember how it went, but a few months later Adrienne sent me this wonderful song called Footprints a few weeks before their second album came out. Probably because I had tweeted a little something on Twitter. It was a song about never being alone and believing. Honestly, it was the right song at the right time. What I do remember is that I cried uncontrollably in my mums arms. I'm forever thankful to them.
My faith grew once again stronger, the worse things got. Weird stuff started happening to my body. Every now and then I couldn't even remember my own age or name. I started struggling with speaking, like I accidentally made up words and didn't make any sense.
Back in the clinic I started walking right into walls, being sure I was walking straight and that started happening more often. Only when they tried prescribing me some kind of amphetamine for treatment back then, I was able to read books till those scary nightmares came back, but now I couldn't even read the back of products at the supermarket. Then even going to the supermarket was too much. And other strange little things would happen, like my eyes started twitching and I'd have the worst headaches and lose so much hair, hands full of it.
Another year went by and things had gotten way worse from the first time quitting school, while it was supposed to be just a "simple burnout". I was supposed to be graduated, have a full time job, maybe even start a family, just like my friends. All of that got further and further away from me. I didn't recognise myself anymore.
Then one day I fell to my knees and prayed right before my bed, like I do every night. With my face wet from tears I asked for God to help me out, because I know it's a sin to take away my own life, but I didn't feel like I was living one anymore and I wanted it all to end. For the first time I selfishly asked for Him to heal me, because not only did I feel ill, I felt so intensely broken.
A few days later my mum read an article on a vitamin B12 deficiency, she could check all my strange, vague symptoms on the list. So we went back to our general practitioner and asked for him to run a blood test on this vitamin. He sort of laughed, said it was a hype, to which I responded it couldn't hurt. Literally he told me "some people are just more tired than others". It hurt me, because this guy knows me since I was a little child. When I was diagnosed with Asthma as a kid, he made it able with medication for me to run again at school. Didn't he understand I was still that little girl, wanting to live as freely as any other person?
I never wanted to spent my early twenties bedridden, staring into the dark of the middle of the night, wondering what if would be like if I wasn't ill, if I was normal. Would I love the city life and maybe live in Amsterdam? Would I have already met the man of my dreams and even have children? Would I have finished my first book? Or maybe do charity work, maybe even in another country? Instead just day by day went by and nothing changed for me.
But then the results came back and I did have a vitamin B12 deficiency, and finally my general practitioner took me serious. He asked me if I wanted tablets or injections, and since I had already read up on the illness I knew tablets don't work if you don't absorb the vitamin from food, so I got injections.
A woman who is trying to spread the word about this disease, Addison-Biermer, told me to read the files made by doctors with the some goal. Too many doctors are missing the signs and don't check up on this vitamin when running blood tests, just like happened to me by my general practitioner and at the clinic. Of course they ran all sorts of tests, but forgot about this one and it caused a lot of damage.
This woman also told me that after the first few injections it would get worse. It did, I remember clearly, as it was my nan's birthday. My system had been doing without this specific vitamin for so long and had to do an entire cleaning of the body. At my nan's birthday party my right arm started hurting worse than before and soon it was shaking when I tried to use my hand, my muscles; it was working.
My friends and I were supposed to go to London a week later and I don't know how I did it. We saw Hunter Hayes in concert and have been on a shopping spree. Of course we had fun, but I knew I shouldn't have gone, because the week after that I spent in bed. I literally couldn't walk anymore, when I tried standing up I'd collapse to the ground.
That was really scary for me, because it had never gotten that bad. I must've asked myself many times why I got punished like that.
But then it got better again. I could go for a small walk when my mum was walking our dogs. Silly enough I was so happy when I could do the dishes again, without breaking anything due tremors in my hands. After all this time I learnt the smallest things are the most important ones. What's normal to most anyone, can mean the world to someone else.
Doctors at different hospitals couldn't find the reason for my deficiency, but looking back over the years it's been going on for a long time. We can't erase what's happened, but I hope doctors everywhere in the world learn from cases like mine. That's all I can hope for, that all my hurt wasn't for nothing, because it's not that uncommon.
I'm not there yet. I still have a long way to go, because something big can still take away all of my energy and then I have to start all over again.
Like at the beginning of this year, when my dad took me to Egypt to see his family there. For one week I gave all, because I hadn't seen my nan in eleven years and it may have been the last time. To make sure we made as many memories as possible, whatever the cost.
Once again the cost was high. It took me almost three months to get back to where I was, but it was so worth it. Even though it was for one week, with a lot of injections and naps, I felt alive again.
A few weeks ago I got the flu. It's really not that bad, but the recovery takes weeks. That's things I've got to get used to, I guess.
Most importantly, it may have been a hard lesson, but I learnt to trust my body, my mind. I hope to give that with you; trust yourself.
Over the years I have lost most of my friends. Simply because I wasn't fun anymore, I guess. If you have to keep cancelling on people they soon have their judgement ready. I'm not saying it doesn't hurt, I do have shed tears over them, but at the end of the day you're better off without the negative comments on how you should lead your life.
Honestly, I wish it was as easy as to get out of bed. If that were the case I would've thrown out my bed and pillows altogether a long time ago. Sporting at the gym, which I have tried after getting out of the clinic, put me even further back. All I can do is eating healthy and take baby steps, learn my boundaries.
Last year I took care of my nan after she got out of the hospital, as I'm her only grandchild without a job, and I did just fine for a few days. Then I had to take a step back, because you have to take care of yourself first, before you can take care of others. Not that I'm saying it is that easy and it went without tears, because I love my nan so much.
But like I said, baby steps.
It's really the simple sayings that are true.
Trust yourself, you're always right. Your body and mind are always giving you signs, you just have to listen and see.
Never doubt yourself, because even people you love or professionals can be wrong. We are all human.
Please, take care of yourself. Diplomas, meetings and work can wait, your health and loved ones can't.
Love as much as you can, tell the people you love that you do.
My nan always read me this little poem when I was a child: "never leave without saying goodbye, because what's there in the morning, may not be there in the evening".
All my love,
Written by Eline Mansi