Apology for absence , plus health news. See ya soon!

Hey guys

I do intend to start playing again very soon. But I've been very busy and also very sleepy.

As most of my friends know, I 've been suffering from a mystery illness for several years, which just gets worse and worse. <removed> I've also had a lot of medical appointments to attend, and made significant progress towards diagnosis.

It turns out that I have a rare form of brain tumour called a craniopharygnioma. This is likely to cause life-long symptoms even if removed, since it damages the pituitary gland. That does not explain all of my symptoms, but it helps.

I'm now on anti-seizure medication which helps with some of my symptoms, but doesn't cure my erratic excessive sleeping., which has been my main problem in-game. It's increasingly hard to be reliable, because I never when I'll drop off to sleep, nor for how long. So I guess I have to accept that my days crewing the Normandie are over.

Apart from sleeping excessively, I've been really busy researching medical stuff online. My neurologist says stop it, but it's essential, IMO. <removed> So far I've managed to get into the very long waiting list fir a supposedly “rare” disorder which isn't rare at all, according to recent research, merely under-diagnosed. I can see why. <removed>

<removed>

Anyways, I miss you guys. I should be back pretty soon, but you'll have to make a few allowances, I'm afraid. E.g I need to take frequent breaks, even from video games, and eating regularly takes precedence over everything. Well. Sort of. It's really hard to change the habits of a lifetime *chuckle *

Hope you guys are all reading this. I don't wanna tell the whole story 300 times over by PM. I'm not that much of an Old lady yet

jay

<removed>

Hope you stay as well as possible, and find the right doctors/tests/treatments you need.

keep your spirits up

narfi

Get yourself better Jay , we will be here when you are ready to come back.
You have been missed too and thought of, only a couple of days ago you got mentioned in our Soc chat.

(all good I promise )

Jay, I have truly and sincerely missed you. To others it may sound awful but I am so glad that you finally got your diagnoses, <removed>

Remember that you never have to make apologies for any absences when you are among friends, Lifes too short for that my dear, Live happy and come have a blether when ever you feel like it - you know where to find me!

You might squirm, but your getting tight squishy hugs whether you like it or not!!! **hug**

SoReal said:

Get yourself better Jay , we will be here when you are ready to come back.
You have been missed too and thought of, only a couple of days ago you got mentioned in our Soc chat.

(all good I promise )

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see.. proof we miss you!!!

Oh wow, if this helps I read an article on a sleep thing like what you say a while back in a Discovery mag. It was in a woman and she just kept being tired and sleeping until eventually she couldn't work and would sometimes sleep for days. I don't believe it's this bad but I will for sure try to find this for you. They did something and it slowly made it better. Mmm i hope i still have it.

Great to read your post!

Im Also glad you are back, and i wish you all the best. I really hope you will feel better.
What would the Entropia be without some yay once in a while

Many thanks for all the supportive messages, especially from Alaina!

Yes I did read most of it, but I missed the last few, so now Ive no idea what the last poster (Mega) had to say.


Well, it looks like I'm victim of good old overmoderation again (am I allowed to state my opinion on that?) Whilst I did find a certain poster's opinion offensive, I think that both I and my friends defended my position pretty damned well. And it doesn't exactly stop people having an offensive POV if nobody gets to argue with it. We'll just get ill-will in-game instead.

For those who wonder what the missing bits of my text said:

Well, they were mostly statements regarding my current legal, financial and housing position (together with resume of former woes, for the sake of context) and amounted to surprisingly good news. Ta-da! Since my friends mostly know the negative part of the story, and are bound to ask, it's a great pity that I'm not allowed to discuss new developments here and save myself a lot of typing in PM.

can THIS much (above) be allowed to stand?

Only one single statement towards the end proved controversial (and only one person found it so, as far as can judge) so it really beats me why so much of my message got edited out; together with all my further explication, for the benefit of the guy who disagereed with my opinion. Oh! Together with all reference to family helping out, so it now looks as if I'm all my lonesome.

Anyways, thanks a million for the kind messages. They really do mke a difference.

jay

Zenzile said:

Oh wow, if this helps I read an article on a sleep thing like what you say a while back in a Discovery mag. It was in a woman and she just kept being tired and sleeping until eventually she couldn't work and would sometimes sleep for days. I don't believe it's this bad but I will for sure try to find this for you. They did something and it slowly made it better. Mmm i hope i still have it.

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Thanks for the kind thought. No worries. It's a common symtom of the tumour, so no mystery . Its aso a possible symptom of lot of other things, so chances it's the same thing are slim. I do sleep excessively for days on end, but with periods of wakefullness (thankfully! or else I'd die of dehydration or summat ). Though I'm seldom up to much whilst awake, when that happens. It's rare that I exceed 16 hours/day.

I'm hoping Edocrinology might be able to help on that front, but at present, my appointment for that seems be lost in some beurocratic black hole or summat.

jay

jaywalker said:

Well, it looks like I'm victim of good old overmoderation again (am I allowed to state my opinion on that?) Whilst I did find a certain poster's opinion offensive, I think that both I and my friends defended my position pretty damned well. And it doesn't exactly stop people having an offensive POV if nobody gets to argue with it. We'll just get ill-will in-game instead.

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Again, it's great to see you back and yes, since you been gone a lot has been going on here on the forums. It's really unclear what is going on but hopefully 711 will come in and work it out soon.

OZtwo said:

Again, it's great to see you back and yes, since you been gone a lot has been going on here on the forums. It's really unclear what is going on but hopefully 711 will come in and work it out soon.

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Thanks Oz.

Weellll, to be fair to the mods , my opinion was somewhat political (though very vaguely stated, without giving the actual rationale. Woulda maybe been OK if not for somedody thinking he knew what I meant) and the ensuing argument was very political. But the facts were just facts.

As i just said to Alaina , in PM, you can't talk about the light at the end of the tunnel without acknowleging the tunnel, so my edited post doesn't contain half so much good news as it originally as it originally did. Ironically.

jay

Btw, I also get "absence seizures" (brief lapses of consciousness). I sometimes wonder if that's the reason why I keep typing the same damned phrase twice over .( I usually manage to edit it out but I noticed the last one too late

That's oneof the things that isn't explained by the tumour, cos I've had these things since I was small, and realised what was going on , in my teens. But then I decided to keep quiet about it, because I didn't want anti-epileptic medication. Bit late to care about that.

Anyway, nobody notices online. ofc. They just assume ethat you're busy PM-ing somebody else, or whatever. And if people notice IRL ( they very often do, in fact) they usually assume that I'm lost in thought (I'm that sort of person, after all)

They led to some spectacular accidents, back when I worked in a busy warehouse. But my terribly busy Guardian Angel ensured that nothing more than ice-pack was ever needed to fix things. I know, i know, i should not have beeen doing that job, but beggars can't be choosers as they say, and I'd put the seizure thing so far to the back of my mind that I believed my own myth at the time.

But there it is. I finally came clean about the things. No biggie , really, not like their big brothers (which came along more recently)

jay

Wish you all the best ;-)

always take care jay get well soon

Hi Jay.

I had no idea you were going through this (did you hide it well, or was I being an inattentitive dumb-ass?). I did notice you wasn't around, and now this explains it.

Take care and best of luck with the battle ahead. Real life always comes before the virtual.

Now then, grab hold of that RK-20 and do a bit, will you!

Really sorry to hear this news but on a positive note at least you are now a road to better days.

Hope the treatments work - keep strong

Oh, so thats why I haven't seen you log in lately. Well, get better soon!

I hope everything works out and your life can be lived out fully

in my prays

Alainax said:

Jay, I have truly and sincerely missed you. To others it may sound awful but I am so glad that you finally got your diagnoses,

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I've been racking my brains for a way to say it without repeating stuff that was edited out.

But , basically, if you can't work, have no savings, and can't prove that you're sick, you have a bit of a problem, as Alaina knows. That's why she said what she did.

well, actually you can have so much of a problem that the illness can pale into insignificance.

....Which is where i was not long back, and why the diagnosis is great news though it really doesn't sound like it from my edited post

Seriously guys. I've been ill for years. It isn't hurting me to find out what's wrong. Quite the opposite. I meant to share the good news with you guys, not bring you all down.

I do appreciate all the good wishes but please don't feel sad for me. I'm feling pretty damned happy atm, like life might be worth living after all

jay

Wishing you all the best Jay! Stay strong

Get well soon Jay, Finally found this thread and wow had no idea was so intense. Miss you tons and merry Christmas.

-The Chief

P.S. Thought you should know shop needs restocking lol

I never knew you, Jaywalker, but I hope you're doing well.

I know that a lot of people here would love to hear an update on how you've been doing.

I wish you well.

Scurvy Sityl said:

I never knew you, Jaywalker, but I hope you're doing well.

I know that a lot of people here would love to hear an update on how you've been doing.

I wish you well.

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Indeed

I was very happy to hear back from Jay today, as a dear friend she has been very much missed! The good news is she is her usual cheery self, full of wit and humour coupled with intelligent conversation!
Unfortunately she is still having her on going battle with the health issues, but is at last possibly getting to the bottom of it all.

As for EU the gfx is the limiting factor, and she was waiting for some good news on that before providing an update

Alainax said:

Indeed

I was very happy to hear back from Jay today, as a dear friend she has been very much missed! The good news is she is her usual cheery self, full of wit and humour coupled with intelligent conversation!
Unfortunately she is still having her on going battle with the health issues, but is at last possibly getting to the bottom of it all.

As for EU the gfx is the limiting factor, and she was waiting for some good news on that before providing an update

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Great to hear!

Alainax said:

Indeed

I was delighted to hear back from Jay today; she has been very much missed as a dear friend! The good news is she is her usual cheery self, full of wit and humour coupled with an intelligent conversation!
Unfortunately, she is still having her ongoing battle with health issues but is at last possibly getting to the bottom of it all.

As for EU, the gfx is the limiting factor, and she was waiting for some good news on that before providing an update.

Click to expand...

Does anyone have the latest on Jay's situation? I've not seen or heard anything for many, many years and worried. I miss her so much and hope she's okay.