Hi, my name is Thinkie, welcome to my blog!
I'm a student in cultural studies, a museum enthusiast, a scrapbooker and an art journaler. I love to travel within Europe and I enjoy photography. You can read more about me on my homepage.


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I enjoy:

Ali Edwards
Celine Navarro
Michelle LaPoint Rydell
Elise Blaha
Les ateliers de Karine
Amy Tangerine
A Beautiful Mess
Balzer Designs
Bram's tea blog

And in Dutch I enjoy:

Maarten Batenburg
Museum Meermanno
Roeland van Wely

I live, I love, I create, I capture, I learn, I enjoy.

Half Life

This month marks the point in time where I've been an ME-patient for half of my life. 15 years, 4 months. Research has brought the knowledge on this disease much further than it was when I was a teenager, although some pieces of the puzzle are still missing. We seem to be on the brink of a full picture of what's wrong with us, neurologically and immunologically, on the level of cellular energy metabolism and other (dis)functions. But sadly, the Netherlands is one of the countries where many people (doctors and politicians included) prefer to see it as a psychosomatic disorder and ignore all those inconvinient facts proving otherwise. This influences the possibilities of getting a disability pension, personal relationships and, most importantly, medical treatment. The options for medical treatment are limited due to limited knowledge of the disease, but even the ones that do exist are hard to come by for Dutch patients since many doctors will only refer you to a facility for CBT (cognitive behavioral therapy), where they treat many types of chronic fatigue under the label of chronic fatique syndrome (CFS) and claim that thinking differently will cure most patients. I wish this were true for ME-patients, but when you have a neuro-immune disease, there's only so much influence your way of thinking can have on your well-being. Pushing yourself too hard and trying to forget the limits your body is setting you will only make things worse. Trust me, that brick wall and I have become quite intimate over the years and it also hurts when you slowly walk into it.
I'm lucky; while I was confound to my bed for about 22-24 hours a day in 1997, thanks to finding a diet and a balance between rest and activity that work for me and other factors known and unknown to me, I'm now in a place where as long as I get enough sleep, I feel I can function at almost half the activity level of a healthy person. That might not sound like much, but to me, it makes a world of difference; I can do almost everything I want to do, only at a slower pace. I don't get a disability pension. The way my health is now, I should get a partial one. But when the decision to take it away was taken, my health was far from where it is now and I should have gotten an almost full pension. On a personal level, it's frustrating at times. Only a few weeks ago a friend was suggesting my ME might be pshycosomatic. This is someone who means well and in some ways knows me well, but clearly doesn't know me that well in other ways. It's hurtful. People like that have an incorrect view of me, they make me feel like they aren't invested in me enough to take me serious and learn about my disease, and rather jump to conclusions or listen to propaganda. People that aren't as close to me can't hurt me in that way, but it is frustrating, when people often don't take it seriously when I tell them that I'm physically unable or limitedly able to do something they ask me to. Or when they say that they've been tired too lately, or also have a headache. I know peeps, I wish you felt energized and didn't have a headache. And you may complain to me about that as long as its not in reaction to me telling you about my ME-symptoms, as a way to tell me you can relate, because as well as you're intentions may be, if you don't have a chronic illness, you can't. I've had chronic headaches for 13-14 years and still have headaches part of the time. I no longer wake up feeling like I've danced and drank all night, ran a marathon or two and then went out for the night again, being run over by several trucks on my way home. On a good day, after a good, 12-hour long night of sleep, I will wake up feeling like a healthy person after a full day's work and a visit to the gym. This is not complaining: I'm really, really happy with where I am right now! But trust me, when I tell you that tray is too heavy for me to carry, it means the thing is several times as heavy to me as it is to you, if you're healthy and under 70. Just take it serious, people, that's all I'm asking. That's all an estimate of millions of patients worldwide are asking. The incorrect views on ME that many people hold make it harder for researchers to get funding for biomedical research on this disease. It makes it harder for people to get the right type of treatment, which sometimes costs lives in severe cases, and in many cases makes people more ill than they would be with treatment, even though treatment will probably not cure them. It interferes with personal relationships. It makes it harder for ME-patients to make the best use of the energy they do have and to participate in society and in a working environment and get the help they need to do so. Not taking this seriously is WAY more expensive for societies because of loss of workforce than funding research that might result in more knowledge and, if not a cure, better treatment that might improve the activitylevel of patients (and therefor their ability to work, even if it's part time and with some adaptations.) Again, I'm lucky. I'm well enough and lucky enough to have a lot of good things and people in my life, to have enough energy to do the things I want, to have a husband supporting me and providing for me so I can choose my own path at my own pace now that I have the energy to be part of the world outside our home again trough other means than the internet. I'm working at finally carving out a small place for myself in society, where I can make myself useful in a way that suits my health, talents and interests. Something that would be so much easier when more of the people I'll meet on this path understand ME and can see how they can enable me to perform to the best of my abilities or at least not make things harder for me than my health is already making them. ME is a powerful factor in my life but not the most defining one. Many of my fellow patients are not as lucky and having to fight against lack of understanding makes it unneccesarily hard on them.
But take a look at the International Concencus Criteria, they explain these things much better than I could. All those doctors and researchers who have worked on this didn't just make these things up. These are serious people with a lot of education and experience behind them. I recognize myself in more than the amount of symptoms needed to get a diagnosis from a doctor using this. For the Dutchies reading this: On the website of the ME-cvs vereniging a Dutch translation can be found, and (Dutchies only:) don't forget to sign the petition Erken ME for which a link is provided on the left.
Thanks for reading this. Back to our regular programme after the break ;-)

Geplaatst op 28-08-2012.
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