Hi from Norway

JayCS

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yep same for me anything (preferably natural) that can stop this stupid fatigue making me feel drunk I’d grateful for. ketch on Sunday taught me how to write in different colours! This suits my rainbow brain hehey! 🌈💛🧡❤️
I challenge you to get my seizures going ;-) (... no worry, they are hardly externally triggered) :cool:
Yellow is a kind of invisible ink tho.... :LOL:
 

Auriel

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Not making them flash though @JayCS if I cause you a seizure I could end up in war with Germany nah naha no thankyou not today not ANY DAY!🤣
 

Auriel

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Oh fimi I love this 💝 how colourful we’re getting! 🌈⭐💫
 

tormodg

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Apr 5, 2022
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Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
Sorry for being absent again. I have been very ill lately. I mentioned in my first post that I am waiting for a diagnosis of ME/CFS.

These past weeks I have simply been completely knocked out by it. I spend my days in bed mostly. I have absolutely no energy, constant brain fog, flu symptoms (but no fever). I am so exhausted that it literally hurts to just lie down.

I bought an electric wheelchair because I can't walk more than a few steps before I get exhausted. It helps a bit but I really can't get out of the house at all these days.

The most positive thing to happen in a while was a note from the Norwegian Health Services that they have reviewed my medical status and have "awarded" me disability status. I am still waiting for the details but who would have thought it even a few months ago...
 

JayCS

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Oh dear, very sorry to hear that! But good to hear about your "award". Just important we don't identify ourselves as disabled, it's just a label that can support us.

For a self-ironic lark I often answer: "Man, I'm not disabled" when esp. my wife is a bit too considerate. My disablement status is life-long due to fairly harmless seizures, but that doesn't necessarily mean I'm going to keep feeling as disabled as I am now. (Altho I've lost a bit of hope since the jabs.)

In a bad patch myself I have exactly the same problems as you, just praps a little better.
However I detest bed in the daytime, and as lying hurts just the same I prefer my standard position, twist-stretched sitting leant against my couch, which is something which'd really hurt in bed.
And I also need the gentle distraction of doing things at my laptop. No music anymore at the moment, but a bit of work and of course "fibro-work" like here & research, so I can get a further handle on things.
"No music" isn't quite true, I was asked to do a 15' improvisation yesterday (2x5' cycle there and back), and it went quite a bit over my limits, but was worth it. But no practicing or recording.

How do you spend your days?
When we started thinking about a wheelchair we decided that this wouldn't be a help at all. If I can only walk a few steps, then I only walk a few steps, but I do that. Also normal sitting is a big problem for me, I need to twist-stretch all the time, in a wheelchair would be excruciating. To get further I have my bikes, one now with a very low bar, and that slight slow movement in flat surroundings is best for me - hurts less than anything else, distracts and gets me places (at the moment only 10-15 minutes a way) or just moving. (But I live in brilliant surroundings - which is what I think living is about, but I'm also lucky that it's still perfect with fibro & MCAS.) The "good" sunny & windy weather is also keeping me indoors gladly, as it quickly hurts. (I do love looking at it from indoors or enjoying a quick stint outside.) I try to air and keep stretching and starting self-acupressuring again more, e.g. for energy.
 
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Auriel

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I’m sad your symptoms have become considerably worse tormodg but happy you’ve gotten the award you rightly deserve. it’s ok that you disappear sometimes, we get used to it with the fibro thing, maybe get some more tests done if you’ve gone severely downhill fast
Best wishes 🍀🇳🇴🍀
 

tormodg

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Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
Thank you both! I’ll respond more when I feel more above ground…

@Auriel - I thought about you the other day while I was listening to an old Norwegian band from the nineties. Have you ever listened to Velvet Belly? Check them out. I was a huge fan back then but they faded into oblivion before I suddenly rediscovered them by accident (one of the perks of being confined to bed…). My favorite albums are The Landing and Window Tree. Soothing, comforting music from Norway.
 

Auriel

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Country
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I been listening too tormodg, I’ve listened to a few of them (and one with Anne Marie Armadal) (sounds to me like a darker edgier version of the corrs) while I was looking it put me onto other bands I might get into, I found one ‘omnimar’ .
isnt it good how a fibro forum can put you on to other cool things 😁
I 💗 🎧
 

tormodg

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Joined
Apr 5, 2022
Messages
14
Reason
DX FIBRO
Diagnosis
03/2022
Country
NO
If anyone is interested I have a page on SoundCloud where I post my music projects.

Go to soundcloud dot com and search for "turbotobben" (nickname from childhood).

This is far from professional recordings, everything is made at home. But it's what I do when I have the energy to do it.
 
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