There are probably many different ways to start this blog post that would be better than this, but I know no other way than to say that 2018 was one of the worst years of my life. Yes I know, it’s not how one usually begins any kind of inspirational post, but when I am done, I hope to have instilled some sort of hope in your heart, especially if you are struggling in life.
This will be a very long post, but there is no way around that. I need to write this for myself and for everyone that might be struggling in their life. For the rest of you, thank you for reading however long you have the energy to keep going.
”The greatest accomplishment is not in never falling, but in raising again after you fall”
I want to be honest, this year has really put my mindset, my body, my relationships and my faith in myself to the test. The plans I had for this year were many, and my expectations were high, but as the days passed along I had to watch my dreams disappear in exchange for illnesses, struggle, anxiety, empty bank account, a bottomless sorrow and lack of hope in my heart.
I have had to wait a few months, some of you have read between the lines and others follow me on Instagram and is hence a little bit more up to date with my current ”situation”. But I have been a little bit lost in life, and lost for words as well, and that my friends is not like me at all.
But, when you hit rock bottom, things change and you can find yourself behaving differently, thinking differently, talking differently…or in this case, not talking at all. But the great thing with hitting rock bottom, or what feels like it, is that the only way is up. I mean, things can of course always get worse *knock wood* if you want to look at it from the negative perspective. Happily enough that means that things, whatever it is that you struggle with, can also get better.
If I were to tell you all the things and all the struggles this year, it would become at least half a book and also include and involve people I do not wish to involve, so here is what I can say about this year.
At the beginning of the year, we started what was suppose to be a surface deep renovation. Nothing major really. Knocking down a wall, painting over some wall paper, that kind of thing. But our ”renoation” quickly delveloped to what can only be described as an avalanche of hidden mold and construction errors so huge that it mean that the roof in some parts of the house could suddenly collapse on us if we did not do anything about it. And from there, the avalanche of house and health problems just got bigger and bigger. To spare you all the details I will sum it up by saying that we could have bought a smaller house for the money this has cost us and the amount of mold was unlike anything our carpenter had ever seen. At one point we actually had to leave our house du to all the mold and the amount of hidden damages in and on our house was out of control.
As a cherry on to of the cherry I started becoming very ill. When spring time was here, I had to treat my eyes with laser not to become blind and at the same time I started to become very dizzy and could not stand up at all. I was at a doctors appointment the first time it happened and could barely get home without fainting or throwing up. I struggled with dizziness for a longer period of time, sleeping and resting in bed many days but was finally rushed to the hospital. After some testing and keeping me for observation for a few days they diagnosed my problem with ”dizzyness migraine” which to my surprise, there seemed to be little or no remedy for. It came and went like it wanted to and I tried everything to make it better but nothing worked.
During my stay at the hospital they found, instead of a solution to my dizziness migraine, a heart murmur that needed medical attention. They asked me question like ”do you get tired and out of breath easily” and I nodded a silent ”yes” to all their questions. It was nothing urgent since my oxygen levels were good, so they sent me home with a promise of further investigations at a later stage.
2018 was the warmest summer in many years and the events in our lives had lined up so that at that point, we had no insulation in our house to keep the heat out. No working AC due to the renovation, and our Swedish houses are built to keep the heat in and not out (hello Nordic weather. Due to the heat wave the shelves echoed empty of anything that cold help us get temperature slightly cooler and the temperatures both outdoors and indoors was extreme. The heat added to my dizziness and exhaustion and when things was at it worst, I could barely move or work. My existence was mainly sleeping and resting in the shadows. I had no energy to meet anyone or do anything.
I went for one quick dip in a lake close to us during this summer and hade one little ”mini road trip” with Magnus in our neighborhood, and that was it. The times we had company was a struggle to act and look normal, not that I couldn’t or wouldn’t tell anyone. It was just that I wanted and needed those ”normal moments” in life to lift my spirit and heal me a tiny bit mentally from everything that was happening. At this point our house missed window, doors and even walls in some places and money was becoming a problem. The carpenter told us that 1/10 of the mold we had in our ”bedroom” was enough to close down a school or daycare and i some places the ceiling/roof was so full of mold that it was as if there were ”spots of ceiling” between the mold and not the other way around.
But I still had my hopes up, because I know that in the darkest of places there is always light to be found. It’s been my mindset ever since my childhood and it kept my head above the water many times in life. And I still felt that there were happiness and beauty and summer and flowers and cool ice cream to enjoy even with the lack of health I was experiencing.
My ”big birthday” was closing in and even though I did not feel my physical best, and somewhat tired mentally and emotionally, we made it so that I could enjoy it anyway. We rented a ”Motorhome” that had space enough for us and all my medicine, photo equipment, a kitchen with refrigerator and a large bed. And off we went!
Unfortunately we did not get far. After the first hours of driving something happened to me, and without going into all the details of all the illnesses, my body reacted to my medicine like it had 10 times the power and effect in my body. The thing is, Insulin is what keeps me alive, without it I die. But there is also that little thing that if I get too much, I also risk dying. It’s a powerful hormone that no one can live without. But when your body starts reacting to it differently, than it has the previous 30 years with Diabetes, it becomes problematic. And that was basically what happened. To make a really long and excruciating story short, we had to turn back home.
It became too dangerous for me, as dangerous as can be if one wants to living, and we had to realize that there wwere no other options than to go home. To be closer to civilization, hospitals and a proper internet connection. I stood in the sunset, on a hill beside the road in northern Sweden, with soft raindrops falling on my face, the sky burning as the sun went down as I took the decision to go back home. I cried for hours, and we sat in silence most of the drive home. Hubby drove all through the night while trying to be as comforting as he possible could.
I couldn’t sleep or eat, or drink. I felt that it was just too much. I struggled with my mindset and felt that the world was unfair, it was all unfair. I had barely been able to function this summer, could I not just get a moment of piece?
We went home but due to my problems with my reaction to my medication I was suddenly in a state of something called ”Keto acidosis” which is, shortly described, a state where you’re poisoned from your own body du to lack of insulin. It can get very dangerous very fast and due to me having problem breathing, I immediately called my medical team for support. At that point they told me to go straight to the emergency ”asap” and as I talked to them over the phone, it felt like my life was spinning faster and faster. Like a tornado of illnesses and stress were I wasn’t even able to to take care of myself.
”We cannot do anything for you anymore”.
It calmed down a bit the coming weeks due to my dad moving in with us as a support for me case something would happen. We live a bit off, with no close neighbors and since I work alone no one would notice if anything were to happened with me.
A few weeks after that, Magnus and I went to see the chief physician/Endocrinologist to see what could be done in terms of helping me. His answer was simple but the consequences of it was daunting. The words ”We cannot do anything for you anymore”, still echos in my head.
What does one say after receiving a message like that?
One of the future ”possible solutions”, or more or less the only solution, that he still did not wanted to recommend due to high mortality during procedure – among many negativ aspects, was a Pancreas transplant. I buried my hands in my face and didn’t want to listen anymore. I just wanted to press pause and give myself some room to breathe.
Somehow I had ”managed” to develop a ”state” in my body that can best be described as ”brittle Diabetes”. On top of everything else (oh yeah here’s a shot list of the major illnesses); brain injury with chronic fatigue and dizziness due to Stroke, dizziness migraine, chronic pain from Whiplash injury, ”regular migraine” from whiplash, nerve damages, hypothyroidism, Diabetes type 1 – not something you can cure no matter what crazy people tell you, several ”stomach/intestine” illnesses which includes lack of enzyme, IBS and a nerve damage to name the big ones and then now, this brittle Diabetes ”syndrome”.
The ”brittle Diabetes” makes my blood sugar jump down, or up, as it feels like for no apparent reason. To out it shortly, sometimes 5 units of Insulin is sufficient, sometimes it’s lethal. The only way to make it better, is to make the blood sugar more stable, which is catch 22 since it is almost impossible to make it stable when it’s in this state of ”doing whatever it want’s whenever it wants”.
Just to make it more understandable. It’s like going from 50 km/hours to 350 km/hours in a blink of an eye just by slightly touching the accelerator. And then, when you’re just slowing down to make an exit from the highway, it’s like you hit the brakes with full force. But then the next day, the car runs smoothly as normal and everything works. But you never know when it’s going to work as it should and when it’s not because there are no warning signs to tip you off. And to have this unstable Diabetes shortens your life with many many years, not just 1 or 2 years, but with 20 years, and the quality of life being low during the years you have left.
So what do you do with that information?
I’ll tell you what you do.
You break down, and you feel like you cannot take it anymore and that life has no meaning or value at all. And you cry, a lot. And you wonder what has become of you and your dreams. And you lose control and feel detached from everything. And you feel like you are missing out, and that who you are inside is something that is not meant for you. That you are trapped in a body that do not function properly. And then you wish that someone could come and rescue you and just fix things, because it can’t be possible for one little human to sort this out.
But then it slowly and gradually sink in, what you knew all along. That there is no one coming to rescue you and that you are pretty much all on your own. And when that hits you, the raw truth that there is no one coming to rescue you and that it’s all depending on Y O U, it can either break you or make you realize that if it all depends on you, no one else can fuck it up either. And you might become angry, or even furious and raise up from the aches with all that you have and decide not to quit. Not to give up. You’re not giving up today, not tomorrow and not any other f*cking day in this life that you have been given.
And there I stood, literally, in what felt like the ashes of my dreams. And I felt weak and vulnerable but strong and fierce, all at the same time. And I decided that it was enough, that I had to put up a plan, a strategy to do what is almost impossible. I had to fully embrace the fact of dying early, the fact that if I can’t sort it out that transplant might be my future. I just had to figure it out and to the impossible, to beat my ”catch 22”.
”But it always seems impossible, until it’s done”
So for the last weeks, nay Months, I have been planning, praying, talking, thinking, estimating and searching for answers, tips, tricks and anything that you could possibly think of. To do what feels impossible, but it always feels impossible until it’s done.
And that my lovely friends is where I am at now. I do not know how this will end, but I know that at least I can say that I didn’t give up. I always had some kind of belief, or trust, that it will all turn around and become better from now on. Every time I have shared about my health problems I have always thought that ”this is as worse as it gets”, but then new health problems have added to the mix. I have been hesitant to share details about it all, because I do not want you to feel sorry for me. If anything I want you to feel inspired.
If you are thriving, I am so happy for you, be thankful for that and do not take it for granted. If you are struggling too, remember that you are not alone, do not lose hope and do not start doubting your self worth or your ability to make the best out of the life you have been given.
If you have read this far, I am forever grateful for your time. If you want to watch this in video format, there is a video below. Much love,
Puss & kram /Maria