Coping With A New Diagnosis


There is a reason why I haven't been able to work on my blog or shop as I used to. And that is simply because of my health. I always tried to avoid talking about this topic because I'm still learning to deal with this myself and searching for answers but why do I have to wait till I can handle the situation? Why not just open up about it now?

That's one of the reasons why I started blogging about my health: to help others who are going through the same. To be a voice for those who cannot talk about this. And writing has become some kind of therapy for me. A place where I can honestly talk about subjects that I have a passion for but also about issues I'm struggling with.

Late Spring, beginning of Summer I started experiencing new symptoms. The first time I woke up in the middle of the night all sweaty and shaky. I had no idea what was going on. I first thought it was just a nightmare so I decided to get up. I couldn't. I felt drawn to the ground and my heart started pounding really fast. It felt like there was sweat dropping off my whole body but it didn't. Totally freaked out I called for my mom who luckily was there to help me get through it. She wetted a towel and put it on my legs, opened the window, put the fan on and gave me some salty chips and water. It faded away after a while but the next day I felt extremely exhausted. Most people would think this was due to dehydration but I drink plenty of water. What was going on?

This happened again a few times. Not only at night but it could happen any time as I was sitting, standing or laying down. As a chronic illness patient it's hard to know when something is a flare from your illness or when it is caused by something else. I've fainted in the past and I struggled with dizziness multiple times before but never to this extent. And most of the times I could prevent it from happening. I never felt so dizzy out of the blue, it usually happened when I overdid things or pushed my body too far. I needed to see a doctor.

My blood got checked: my vitamin B12 and iron levels were frightening low. Another thing that got tested was the active standing test. If you don't know what that is, it's basically getting your blood pressure and heart rate measured when you immediately stand up after laying down a few times. It showed how my blood pressure would drop low after a few seconds and my heart starts beating faster to compensate.

My doctor diagnosed me with orthostatic hypotension (a form of dysautonomia) that is caused by my other chronic illnesses: myalgic encephalomyelitis and fibromyalgia. Please considerate the same illness may affect people differently or the same symptoms may be caused by different illnesses.

After about six injections of vitamin B12 and two of iron combined with homeopathic oil for low blood pressure I noticed a difference. I got another attack after a physical activity but it didn't happen anymore while sitting or laying down. While I'm writing this I'm going to my doctor later today to get my blood checked to see if my body is taking up the vitamins. I still have a ton of questions that I hope to be answered.

The thing that scares me the most is, when this happens at public places. On my way to visit a friend I threw up because of dizziness in a packed train. Last weekend in Brussels the dizziness and nausea hit me again but I luckily got home in time. It worries me and those around me.

You would think I'm getting used to health problems now right? But the thing is, just when I thought I found ways to manage life with chronic illness, new things come up. I feel like I have to go through everything all over again and it sucks. It makes me insecure about the future and I hate losing that little control I had.

Right now I'm still searching for answers and finding ways to live a 'functional' life with these new symptoms. I've been adjusting by eating more salty, but small portions, getting more hydration and making sure I cool down. Heat really affects my symptoms. I bought a mini hand fan that I can always bring with me and I use my ice pack almost daily.

I'm more than happy if one person out there reads this and feels less alone in their fight.

Lots of love,

xxx Kirsten

#chronicillness #dysautonomia #orthostatichypotension #fibromyalgia #chronicfatigue #ME #chronicpain #invisibleillness

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