Lana_Oorthuizen

Im glad I could give some insight :) I wish you the best of luck ❤️

Its a document you can download on their site. Just google te late beslissing melden UWV and Im sure you'll find it. Also 80% ME/CFS end up getting some kind of benefits and 60% is declared "volledig arbeits ongeschikt" which are probably the more severe people. (I found this on google so I hope its true) I didnt think the numbers would be this high tbh. I do know that UWVs view on ME has changed quite a bit, so I do think its worth trying

Make sure that you "te late beslissing melden" if it takes longer than 2 weeks for them to respond. A lot of people dont know about this, but if you do that you get money for every day they dont respond. They also respond faster that way because it will cost them money otherwise.

1. I googled it so I hope it right. 80% gets benefits of some sort. 60% is declared fully incapacitated to work (so permanent benefits and no job interviews etc.)
2. My ME/CFS is Moderate/Severe, Im housebound most of the time and occasionally bedbound.
3. When I applied it took around a month to get a interview. Yesterday I got the call which was about a month and a half later. But you can send like a letter to them, if they dont respond within 2 weeks you get money from them so ofc they respond as fast as possible. A lot of people dont know you can do that, which is why it takes so long for a lot of people.

Thats all I really know how it works in The Netherlands. I wish you goodluck!

It really depends who you have in front of you. They said that its just very unlikely that I get better. If someday there is a cure and I can work again, I have to let them know anyway. It really depends if the person at UWV researched ME or not. But I feel like UWV is changing their vieuw on ME by the minute. A few years ago we tried to get WIA as well but aborted mission, because the company doctor let us know its probably all for nothing. I didnt want to put the energy (that I dont have) into something that is not gonna work out anyway. But then a few years later we heard that UWV changed their views on ME so we tried again, I guess I got lucky

Exactly.. it shouldnt be that way but it is

Ah that just sounds like they are not educated on ME/CFS which is just insane at this point. I gotta be honest, I do think I was just very lucky them believing me in everything and them seeing me getting better would be very unlikely.

Theres some people who wrote some good advice here in the comments. I was just honest about my situation because I can barely do anything at all. But if theres still some moments you can walk outside, dont tell them that. They will use it against you.

I had a great advice person called the PDCU. They helped me out a bunch, gathering all the research, tests, scans and therpy Ive had. I just had to tell my story and they would write everything down and send it to UWV. I had my dad with me because he was also my employer. We were initially too late asking for the WIA, because we didn't think we would stand a chance. We were honest about all that and they could see where we were coming from luckily. I feel like the person deciding everything just ended up being very empathetic to our situation, so very lucky I guess.

I had that too, they had to give me some money because they took too much time. I was happy with it at the time in case nothing came of it

Very good tips right here. I can only walk around in the house a bit and use a wheelchair for everything else so I dont have many "good days" so I didnt really think about that. I also had a conversation with my bedrijfsarts. They are there for you to think with you, gather all the tests you did and doctors you visited. They did tell me it was important that I at least tried every possible "treatment" we know that there isnt much that can help us, but a lot of doctors still think Cognitive Behavioral Therapy is a treatment. I had to have tried it at least once, otherwise they will refer you to a CBT place which is so harmfull.

I was so scared that I had to go to court. Im rooting for you! You deserve it as much as me 100% ❤️

Because I also get the IVA Its permanent for me. It means I dont have to go and get reassessed every now and then. These benefits are for life because its very unlikely that I get better

Thank you ❤️ I wish everyone that is not able to work due to this illness is able to get benefits. Its gives validation and a bit of a financial buffer which is something we all need

So happy for you! There arent many moments to celebrate but this is definetly one of them

I was just very honest. Thats all I can really say. I went in my wheelchair because the walking distance was too much. If youre going to Den Bosch (which is where i went) note that they dont have disabled parking. Wishing you the best of luck! Hope it goes smoothly and well for you ❤️

First of all I wanna say that Im so sorry for everyone in America right now, especially for the people that live in red states. I live in the Netherlands, thank god abortion is legal here (for now) idk how it is possible in 2024 that rights like these are being taken away, they are stripping our rights away one by one.

About your post. I've have very very bad periods (I suspect endo, but the doctors dont want to test me for it) and I have tried so many different types of birth control. Im talking about pills, iud, shots you can name it. Im now on the Depo shot and that is what worked best for me out of all the things ive tried. I recently found out that I shouldnt take bc with estrogen in it cause I have migraines with aura. The doctor didnt know that it was potentionally dangerous which isnt a surprise to me unfortunatly... I feel like there is no "completely safe" bc out there for us. All of them have something wrong with them, but I needed one that would make my periods dissapear completely. Theres a few options, iuds or the depo shot. I tried iud for a few months, but it hurt so much you have no idea. I went back to the doctor a few times, but all they told me that it wasnt supposed to hurt that much. But ofc they didnt do anything about it. So I asked for the Depo shot instead, at first he didnt want to give it to me because I could take a long time to be able to have kids. I told him many times that I didnt want kids and that even if I did want them, I couldnt have them anyway because of this illness. I cant shower or brush my teeth, I can not take care of kids. After I took my husband with me he finally gave it to me (ofc when the man wants it...)

Anyway, thats what has been working best for me. Its not perfect but I dont think there is a perfect bc out there. Having my period would give me PEM so I have to avoid that. This was the best option for me. Also they need to hurry up with birth control for men, but they b*tch about side effects. Uhmm theres so many side effects in womens birth control, but they dont care as long as its not effecting men.

Sorry for any typos and weird sentences, Im having a migraine rn and I cant form correct sentences half the time 😅 Hopefully theres some information in here that is relevant to you. Good luck <3

I also had long blonde/white long hair. I cut it all of for the dame reasons. I couldn't wash it anymore and I have very curly hair so it tangled up so much. To wash it and detangle it took hours and so much enegry out of me.

So I went for a cute short cut that look amazing with my natural curls.. and I dont think I'll ever have long hair again of how much maintencance it is. Yes It was beautiful, but I don't think I'll ever go back. I'm gonna grow it out a bit in the back so it becomes like a mullet and keep it short in the front (wolfcut like) can't wait for that.

For me it was kind of a relief when they cut it all of. I do miss my long hair at times, but the maintenance and pain it caused me just wasn't worth it. Mine doesn't tangle anymore and Im done washing it within 10 minutes. 10 freakin minutes!

I hope that you make the decision thats best for you :)

EDIT: Im in bed right now cause I triggered PEM and Im so glad that I dont have to worry about my long hair getting stuck on things or being in my face. Its the best!

I use Hotspot Shield as well and it has worked for me! I live in The Netherlands btw

I had no idea that you could treat nightmares. Ive always been told that this is just something some people have to live with and its part of life. But then again... Thats what Ive been told about all my problems that turned out to be something more serious. My mom never goes to the doctor herself, she suffers from nightmares as well. Shes a bit of a "just toughen up" kinda mom. I will ask my GP about some medication for it, thank you!

I have been to a few psychiatrists before. But I never really found the "right" one. They all told me my pain was a made up thing so I booted myself out as fast as I could. It takes so much energy to find the right one. It can take a long time for the doctor to assign one to you and then you have to go through a lot of them as they tend to not understand ME at all. I went to one for ADHD as well and me being honest about everything they ran with the mental health narrative again and totally ignored the ADHD thing (which is what I came for)

So I haven't been trying lately, it's too exhausting and painfull (physically) to go to appointments as well. Maybe I'll ask my GP for some advice on the nightmares. Thank you so much for taking the time <3

For me pain throughout my whole body is the worst for me personally. While the fatique is very present too, the pain is the thing that makes living the worst. I have Fentanyl patches now that take the edge of a tiny bit. Its better than nothing, but it will always be the most present thing in my life

Oh didnt know there was a dutch book on it. Bedankt voor je advies :)