My Situation and Lyme in the Media
Lyme in the Media
Lately Lyme Disease has been a huge topic of interest in the Netherlands. We have had the “week of the tick” (www.weekvandeteek.nl), but let me begin by starting with my own take on it. Let’s start by saying that I’m “glad” that Lyme Disease is getting that much media exposure. It is an absolute necessity. The reason why I wrote my Dutch blog at April 11 is because of one particular item. The Dutch Newspapers reported an increase of suicides due to Lyme Disease. More and more Chronic Lyme Disease Patients are choosing to end their own life as they cannot bear the Disease anymore. You can read the articles here (Telegraaf) and here (Volskrant).
It’s a fact that I am very sad about, but a fact that I also understand. Chronic Lyme Patients like myself are living in agony (pain, fatigue and much more symptoms) every single day with no end in sight. We live in a situation that we have to fight for recognition of our Disease and where we are constantly challenged with misdiagnosis and ignorance. Where we often learn that doctors declare us “untreatable”. A hard word. For me it means “to be given up on”. Both regular and alternative health care simply do not know how to make you better. Meanwhile, you are still the very sick patient you were before the treatments.
I honestly do accept that doctors cannot heal us Chronic Lyme Disease Patients. It is such a terrible and difficult disease and a disease that is hardly treatable (especially late on). Where treatments sometimes succeed, but more often do not. Where treatments for one patient were successful and for the other patient were unsuccessful. Where the miracle doctor for the one is a hopeless doctor for the other. Aside from that, the test are very unreliable. There should be much more research about Lyme Disease. For both diagnostics and treatment.
But the thing that bothers me the most is the patient care for Chronic Lyme Disease Patients. The guideline is inadequate to say the least. After a few weeks of antibiotics a patient should be cured. And when they are not? Than the symptoms are not from Lyme Disease. Antibiotics are mostly effective on a beginning Borrelia infection (and not for chronic patients). But still, we have to accept it. Most patients in The Netherlands are forced to seek treatment elsewhere (Germany and other countries). These costs are at a patient’s own expense (same goes for me). The costs can become especially high, to such a point that most of us cannot afford them. Most Chronic Lyme Patients are unable to work and therefore have no income. Insurance companies look the other way and hide behind the international guidelines. WORLD…. WAKE UP!
Be HONEST. Just state that you cannot cure most of the Chronic Lyme Patients! Adjust the guideline. And help “untreatable” patients by any means possible! Albeit by providing a wheelchair, albeit by offering several therapies. Anything that can help us is more than welcome. It is terrible that some of us see Death as their only relieve and option!!! Don’t give up on us!
I like to conclude this item by giving a message to all fellow (Chronic) Lyme Disease Patients. We are not alone! Stay Strong Warriors!
How I am doing
Unfortunately I can only say that I have gotten worse. I’d like to say that I am making progress, but the opposite is true. All treatments and medication were ineffective. In my last blog (https://www.charliepoortvliet.nl/en/cancer-free-immunotherapy/) I mentioned immunotherapy. This had no effect on me. My symptoms are getting worse. I am not going to list all of them, but I am now cognitively doing worse as well. My grammar/speech and short term memory are getting worse. On top of that Chronic Lyme has led to an auto-immune disorder. I literally get sick of everything and everyone (and this is 1 one of the reasons why I don’t like visitations).
But as I am now not under any active treatment I am letting my quarantined life go a little bit. I am only taking supplements, painkillers and natural antibiotics at the moment. It is constantly searching for a balance between treating Lyme and having quality of life. Last month a buddy and I booked a short trip. We went to a hotel to play some online poker and it felt awesome to be out of the house. We even enjoyed a small beer in the Sun. Even though afterwards we were successful on our laptops, the most important thing for me was to enjoy a social activity again.
Night out with friends
After that night I made plans with my old group of friends. We went Jägerbowling with 10 friends and it was awesome. Aside from the activity itself it gave me an opportunity to speak my mind (as I had not spoken to most friends in a while). I really wanted to give them a brief explanation of what is going on and I told them the following:
“As much as I want to say that I am doing better, I am actually doing worse. My organ functions are sometimes lacking and I am progressively doing worse. Not just physically, but cognitively as well. All the doctors I have seen, all the treatments that I have had… All of them were ineffective. I really do appreciate you all coming this evening. Means the world to me. The only way to be there for me is to join me when I am able to do something. I do not like people coming over to see how I am doing. Social interaction should me mutually enjoyable and this is simply not the case for me. Most days I am too weak to even see or speak with people. And I do not want to get even sicker just by having someone over for coffee. So please, understand that I want to see and speak to all of you. But wait for me to give the “green light”.
Given the situation as a whole… I had accepted that I am sick about 9 months ago. But now… Now I accept that I might not get actually get (fully) better. This does not mean I am giving up. Not at all. It is just the situation I am in. I am not going to lie and make it sound better than how it really is. It might be hard for you to understand, but I am not desperate or depressed. I am happy, even though my world is small.”
That night out was special to me for a number of reasons. Me being able to tell my friends what really is going on was one of them. It was confronting, but it’s also the hard reality. When the night was over, I totally broke physically. This day took its toll and it had cost me too much strength. I got a pain attack and I could not control it.
All the painkillers (paracetamol and diclofenac) I had brought with me had no effect. I took a warm shower, drank a lot of water and took some more painkillers. But it did nothing. I am not one for whining and complaining, but I couldn’t sleep due to this pain. My sister was sweet enough to pick me up from the hotel at 7 AM. When I got home I took some morphine (which I had left after my surgery for cancer) and after 2/3 hours I could control the pain again. All in all this attack lasted about 8 hours.
Unfortunately I am too weak to do any form of activity or exercise. But for this one time, it was totally worth it.
Accepting that I am sick and might not get (fully) better gives me peace of mind. I still hope and expect to get better, even though the road to that destination is unclear. Personally I feel this process might take years. But I am happy. I live day by day. I take joy out of all the little things I can do. I do not need much. In my small world – which is my bedroom – I am happy if I can watch some football on TV. Or when I am feeling a little better and can play a few games on the PS3. Even better. I listen to my body and do the things I can do. When I am well enough to take a stroll outside, I take a stroll. But when I am not feeling up for it, I do not grieve over it. Accepting means listening to your body. To focus on what you can do and not on what you can’t do.
Of course I am not living my dream life. I have been sick since 2008 and have gotten progressively worse every year. Al my friends and people of my age all have overtaken me. They have families of their own, a house, kids, jobs etc. etc. And I am forced to live with my parents, am alone and I cannot get out of the house most of the time. But I am happy for them and I enjoy hearing that my friends are doing awesome and are happy. I am not jealous and I do not have self-pity.
I am fortunate to have a family that want to be there for me and do actually take care of me. And that I have friends and family that respect my decisions. That even though I am sick they leave me be and support me. I am happy.
The road to recovery is unclear to me now, although this has never been clear. I often read beautiful stories of patients that are fully recovered, but sadly even more stories of patients that have not or have collapsed. I will keep visiting hospitals and doctors and learning about treatments. I will not give up. From Infectolab in Augsburg I have learned that I have Chronic Lyme, Chlamydia Pneumonia (a co-infection that resides in your airways) and Coxsackie (enterovirus). And that his cocktail is undermining my immune system.
I will use this period to review all the options the doctors are giving me. For now the most important thing to me is to have rest. To take a breather. I am going on a city trip with my mother and sister tomorrow and will use this trip to think things over and to enjoy myself :-). I am excited!
Thank you all for reading my blog and thank you for all the reactions and support that I keep receiving!
Lyme Wikipedia: http://en.wikipedia.org/wiki/Lyme_disease
Stichting Hope For Lyme : http://www.hopeforlyme.nl
Infectolab : http://www.infectolab.de
Lyme in the Telegraaf : http://www.telegraaf.nl/binnenland/22474097/___Vaak_zelfdoding_lymepatienten___.html
Week of the Tick : http://www.weekvandeteek.nl