Coma

People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.

Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.

Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.

Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.

Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.

Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).

My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.

Chris

#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#RaynaudsPhenomenon #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

In April 1999, I started getting extremely ill, getting very tired and loosing lots of weight. After a few days of not really understanding what was happening, I lost consciousness and was rushed to hospital. I woke up in the emergency room, with needles pocking out of my arms, tubes everywhere and doctors and nurses trying to talk to me, but it all felt like a weird dream. I was later told that I had had a diabetic coma and that I was diabetic type 1. My first autoimmune disease: I thought my world had ended. Accepting my diabetes was very hard for me; it took me years before I truly accepted it and let it stop controlling me.

I will never forget the first doctor who treated me for my diabetes at this hospital in Marbella; he simply had no compassion. When I gained consciousness and my mother arrived at the hospital, he showed me insulin and syringes and told me that I would have to inject myself three times a day and simply walked away. The next morning, I was checked out of hospital although my physical condition was still very poor. I came back home faced with this new sickness I didn’t understand anything about. I knew I had to inject myself and that was it, I didn’t understand why, how, or what was happening to me. Fearing needles since I was a kid, I had panic attacks whenever blood was drawn from me did not help with the acceptance of my diabetes. The first few weeks were a nightmare for everyone, I didn’t know how to inject myself so my mum had to; she would run after me before every injection because I wouldn’t let her touch me.

We finally decided in June that I should go spend some time in a hospital in Paris where both me and my parents would get to understand diabetes. I went to Paris for 10 days and got educated on diabetes but to be honest understanding what was happening to me made me resent my condition even more.

The next year and half were complete disasters. I was angry at the world; I couldn’t understand why I was so different. I was outraged that my diabetes required me to be responsible when every kid around me was just the opposite. So, I decided that the best way to express my anger was to self-sabotaging. The clearest way to me was to neglect my diabetes, and that is exactly what I did for a year and half. I wouldn’t do my injections, or I would eat tons of sugar when I wasn’t meant to. This resulted in me ending up in a near diabetic coma in hospital almost every three weeks. The hospital room almost became my second home, to the point where the local joke was that I should decorate the hospital room to my liking as I was spending more time in there than in my actual room.

At the age of 16, another doctor sat me down and caught on with my self-sabotaging. He calmly looked at me and told me straight up, diabetes today can be very well managed, you can live a very normal life with barely any complications if you decide to get your act together and start taking care of yourself. Or you can continue this self-sabotaging of yours and die a very slow painful death where no one will be able to take you out of your misery. You see the thing is with diabetes, is that neglecting treatment doesn’t cause immediate damage, it takes time, it hurts, and your body slowly gives up bit by bit. That speech changed me and although it took me another 10 years to really start taking care of myself properly, something changed that day and I stopped the conscious sabotaging.

It took me 10 years to properly understand that diabetes took discipline and that if I incorporated that discipline in my daily routine, the steps I needed to take every day where like brushing my teeth, taking a shower, and getting dressed. It was a matter of understanding that I needed to use insulin to live, to change my eating habits without completely depriving myself from everything and to learn that the more I moved even if it was just walking the better. The day I realized all these things, I realized I didn’t need to fight diabetes, it could become part of my daily routine.

With that realization came so much peace and came so much gratitude. I finally felt comfortable in my body, I finally felt healthy, and I finally felt like I was in control again.

23 years on, I almost forget I am type 1 diabetic. Injections are part of my daily routine, eating a healthy diet and allowing myself from time to time to have dessert has never been easier and moving my body to feel better has never felt so right. Had I been well informed and to a certain extent well coached when I first found out I had diabetes, things would have been so much easier. I advise people who first get diagnosed whatever their age, to read a lot about it, to ask their doctors as many questions as they want, to see a good nutritionist that will guide them through carb counting and healthy eating and to get into a sports routine with someone that has a minimum of an understanding of what diabetes is. Doing too much exercise and not eating enough for example is a recipe for a hypoglycemia which is not pleasant at all.

If I had one wish, is that I had met other diabetic kids when I was younger, maybe that would have helped, and I wouldn’t have taken that long to regain power. If I had had better doctors who instead of forcing information on me, listened to me and had been a bit more understanding it would have also helped. I would have probably not taken so long to gain control of my body. I am extremely lucky 23 years down the line and now with numerous other autoimmune diseases that have been diagnosed, that my diabetes is so well controlled I almost forget I have it. My HbA1c varies between 6 and 7, I have no diabetic complications despite having other serious health problems which is a miracle! And I am grateful that getting diabetes thought me discipline and gave me strength that I may have not gained especially that I have used it to face many other health challenges that came as I got older.

My two cents on the topic are the sooner you accept something the simpler it becomes. Of course, this is easier said than done, but it’s quite straightforward really, when you don’t have a choice, it all comes down to accepting. #Type1Diabetes #ChronicIllness #AutoimmuneDisease #autoimmune #dailystrugles