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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

This following story took me a while to post it online, I was insecure about it, and I really needed to get out of my comfort zone for it. In fact I’m already 3 weeks busy with it to write it down. (Also my rheumatic pain in my hands aren’t helping to make it easier to type.) But this “story” is my story, and it’s not to be pathetic, or get people to feel sad for me, but I just want to raise more awareness about this disease and what it does. This is why I share my story, if I had my diagnosis 10 years earlier my life would be totally different, but hopefully if people read this and think they might have Lyme disease, get yourself tested and get the right treatment, because if you respond quick to it with the right treatment you’ll be able to fight it!

A lot of people have an invisible illness, and with that comes a lot of ignorance, and judging. On my instagram and my website : www.bijzondersmakelijk.com I try to raise as much awareness as possible, including pictures, which I think is scary as hell, because people can see you on your weakest moments, but the fact is, people can read stuff, but pictures makes an more effecting response.

It’s hard to hear from people: “Oh but you look good!” Uh yeah thanks, but from the inside I feel like crap! I’d rather have looked miserable on the outside and felt great on the inside. With some make-up you can hide a lot of things, and I always felt more secure, it was like I could put on a mask. Sometimes I ask myself, what does a sick person look like? Because people judge way too fast, and they think that you always need to see it when somebody is sick. And they think that you need to be in your bed the whole day, but it’s not the flu or something, it’s a chronic disease, and we have our ups and downs. And when we have our ups, we want to make the best of it, and try to do something! And those people judge you by that, but what they don’t see is that the day after you’re bedridden for a day or a week. Just because you wanted to be “normal” for one day or even an hour. Somedays I can’t even shower myself or walk to the toilet, and the other day I can do it. It’s just a day by day thing, and you get thankful for every moment that you can spend with people you love and all the little things! But so many people have invisible illnesses. (Ofcourse my family sees that I lost more than 60 pounds, lost a lot of hair, I even needed to cut my long hair off because of all the hair loss.) But a lot of people don’t know about Lyme disease, or what it can do to you. If people hear that I got 2 cysts in my head, or have pancreatitis, or got things with my veins then they’re like, “Oh that’s so bad!” Well, Lyme is bad! Normally I don’t like to talk about these kind of things, but I think it’s good to raise more awareness about Lyme and help other people who are also struggling with invisible diseases.

I’m already more than 10 years sick, the symptoms began with just some viruses, having every month the flu, then some back-pain, problems with my stomach and slowly there became more and more severe things with it, but I could still live my life. When I was 18 I moved away from home to start living together with my boyfriend, (I’m from the east, and he is from the south) So for me it was a big deal, I left my family, friends, and was trying to start a new chapter of my life, with a new school and job. But at that moment, just 4 weeks later my health escalated. We went from doctor to doctor, but nobody could tell me what was wrong with me. I could barely walk anymore, so they sent me to a revalidation center, but 5 months later it only went worse. So the doctors from the revalidation center told me, there is something, but we don’t know what.. So we continued our journey to find what was wrong! And finally we found a doctor who listened to me, and said.. Well, I think you got Lyme disease, so let’s test your blood, and in a few weeks we know more. And after a few weeks, I finally got my answer, I got lyme disease with 5 co-infections. First I was happy, I finally knew what was wrong with me, and I thought after some antibiotics that I would be fine. But after one and a half years of trying different antibiotics I got more sick, and the Lyme got stronger and stronger, and has taken over my body and organs. Now I live with constant joint/muscle pain, headaches/migraines, nausea, dizziness and much more.. Only because my diagnosis came way too late, I got Chronic Lyme Disease, and it will stay with me forever. Lyme also got the nasty habit of hiding, sometimes you can be fine, and then it can be triggered through something and you’re life can be turned upside down again. After the antibiotics I tried a lot of different treatments both alternative and the normal health care, but nothing could fix me. After all that trying I got very weak, and I need a wheelchair now, first I was ashamed of it, but for now I know because of that wheelchair I can be at some places that I couldn’t be without the wheelchair. Sometimes for pictures I get out of my wheelchair, because you don’t want that wheelchair in all your pictures when you look back. People are always judging, with Lyme you have good and bad days, most days I’m in my wheelchair but if I have one bit of energy I try to walk.. Unfortunately I have currently more bad days than good days, but the good days will come, I’m sure of that!

Currently I’m just 6,5 weeks back home in The Netherlands, after an intensive 6 months treatment in the USA, far from my family, months away from my family, my home, my dog, everything, just to get daily IV treatment in the USA, and fighting to get a little bit of quality of life back. I couldn’t be more thankful for the people and nurses who I met over here, first they were strangers but they became family, and they helped us get through it! I couldn’t be more grateful for how they handled everything, I came in with life threatening blood clotting factors, so high that I was a walking time bomb.. After 3 weeks I still was rushed in to the hospital because I had a tremor, the whole left side of my body was numb, and I spent 2 nights in the hospital, but I can’t remember anything from it, my short term memory has had a real kick in the butt from it..

In the USA the doctors where I went to, they are taking everything serious and tried to get to the bottom of it, and make it a little bit more comfortable for me. I got so much more answers thanks to the Doc who kept searching and doing more tests, and I couldn’t be more thankful for that!

I needed to go back home because I was too weak, underweight, my stomach couldn’t handle the iv’s, so I only detoxed for 6 months. I went back home to get stronger, and then I want to go back to the USA to fight my ass of, and kick Lyme some serious ass!

What inspires you?

Everything, even the sunlight. I get inspired from other people, from their stories, and trying to help them as much as I can with what I know, because I went from doctor to doctor, and tried so many treatments from the natural path to the regular hospital way..  I’m trying my part to raise as much awareness for this disease, because it surely is a killing disease, that can take everything away from you when you are too late diagnosed.

“You never know how strong you are, until being strong is the only choice you have.” – Bob Marley