@nikosuvisto.com You popped up at the Norwegian ”Fokus på ME“ page on FB! “Niko is a photographer living with severe #MECFS. He has been largely bedridden since 2022 and is too ill to photograph other people, so he turned the camera on himself.“ I’m so happy to see your work reaching Norway 🇳🇴

Painting is out again. Painting my long planned ME-painting. I hope it turns out as well as I pictured it.

If you have a fan you can zip tie some frozen water bottles behind it to get a DIY air conditioner. One zip tie at the smallest part of the bottle and one at the bottom. You can change the bottles to new ones after a few hours if you have backups in the freezer.

4/4 He got killed for his political and liberal views by an ethnic Norwegian far-right extremist loser I won’t even name cause he doesn’t deserve to be remembered. Espen does. And all the other 76 children and adults who died that day deserve to be remembered. 🌹

Ro! 🥁

I had the best day today! It started out rough, but I was able to shake it. Then I spent a few hours in a chair outside with sunglasses drinking soda with my family at my grandma’s birthday party. It was 23 degrees and sunny. Lovely calm conversation. I took this picture before everyone arrived.

Seems like everyone I meet are wellness influencers.

I went on an adventure today. First in months and it felt so good. 15 minutes out at the beach with my dog who went absolutely crazy sniffing all the smells. I needed that and I’m going to try to do that more often.

I won the lottery today! Crazy feeling seeing number after number coming up. 6 out of 7! Still, it was ”only“ 375$, but maaaan do I need it. Fridge empty, 0 in my bank accounts. If I had one number more it would’ve been either 10.000$ or 32.000$, but I’m not complaining. I’m so happy!

Excuse me, but which one of you fuckheads ordered me PEM? Send it back NOW. Anyways.. I managed to draw a little today. Not impressed, nor disappointed.

This is my ME, except from seizures and rashes. I wouldn’t know Meningitis if it shaked my hand.

No, cause this is going on my bucket list.

Gratinated fish casserole ”Fiskegrateng“, an old Norwegian dish. It’s creamy white sauce, macaroni, white fish and breadcrumbs on top. Made from scratch and honestly it’s delish and so filling! This is one of those dishes you can make huge portions of and just heat up later and it’s always good.

The Norwegian GoFundMe for the trial. Look at what our community can do together when we collectively fight for our rights. Every trial brings us closer to a fairer society for ME patients. 4 weeks ish until we know the verdict.

5/5

4/5

3/5

2/5

I have sent a formal response to the Norwegian Directorate of Health regarding their draft guidelines on ME/CFS. In my response, I addressed some of my concerns and what I’m deeply worried about. This letter is for the process of the Norwegian NICE guidelines for ME patients in progress. 1/5

Got these today and I’m a bit anxious to try them. I hate starting on new medications. I somehow imagine that I’ll drop dead or die in my sleep from side effects lol I know that’s crazy, but it is what it is.

Repairing old wash clothes and making new ones of old towels ♻️ This is going to take me days, but oh my the money I’m saving!

I just spilled a cup of instant spaghetties (bolognese) all over my newly washed hair, the carpet, the ceiling, my clothes, my hand knitted alpakka socks, oven and all the cupboards. Everything is fine except from the ecru colored carped which is now orange. This picture is AFTER the cleanup crew.

A Norwegian joke translated to English and it’s still funny.

The Norwegian national newspaper VG wrote about a woman with ME: ”Before she herself became mentally ill“ and I’M FUMING. ME is NOT a mental illness @vgtv.no, SHAME ON YOU. Do better. You owe Pernille a public apology, as well as ME patients everywhere.

Darn it.

I always forget so I’ve made a shortcut on my iphone that’s named ”When did I take my meds?“ which opens my camera and takes a picture of the medication in my hands. So when I’m trying to remember I just open my photo album named the same thing. It looks like this now 😂

I’m in a research project that’s put in place to makes changes to the welfare program in Norway. I wrote them everything that’s happened so far and they told me it was sad to read and that they sincerely hope to change the system. I feel blessed to have been a part of that. Translated edition:

Well, well, well.. look what the cat dragged in. To find this yourself; go to trends.google.com. #AlexPretti #ICE #Minnesota

New guidelines in Norway ahead and the Norwegian ME Foundation was allowed in to make statements. This is going to be voted on in parliament in week 4 and the case will be open for 3 months. I’m hopeful, but I’m also a realist. They have decided to listen to ”both sides“ of the ME-debate.

We had some wind, sort of. Our houses are fine though, just our bins spread all over. We have a lot of storms during wintertime, but I haven’t seen these kind of damages in a while. The pictures are from the local newspaper and these are just some of the damages. 40 m/s | 90 mph