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and turning out all the cupboards. It's amazing what I can get done on prednisone.

After spending all week coming up with reasons NOT to toss myself off a cliff (tricky when you work on the 6th floor with balcony access), I am finally feeling better.

Also lost a lot of strength on my left side - my arm keeps sliding off the steering wheel. Next week I will go and get my B cells checked - all my lupus markers are shooting up so increasing my pred was a no brainer.

Oh well, at least it is a three day weekend down under (Anzac day falls on a friday - whohoo).

cheers

raglet
 

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Sorry tp hear your flaring raglet, i know that feeling of the pred lol
i hope things soon settle down for you, its a bummer:(

take care Lin xxx :hug:
 

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Sorry to hear that Raglet - grrrrrrrrr - dratted disease :mad:

but I'm glad you've given up on the balcony option!

Katharine
 

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Oh Raglet, am so sorry to hear this, I do some understand some of the awfullness, and I so hope that things are soon very much better.

Lots of love xx
 

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((((HUGS))) I'm so sorry you are having a return of all this YUK!

Love Stephanie
 

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Raglet, just to let you know that i hope you feel better soon.:getwell:
 

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(((Raglet))))

This illness gets very tiresome.:mad:
I hope you get to feeling better soon.

:posy:
Lyn
 

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I'm sorry you are feeling bad:( . Prednisone is definitely a better option than the balcony. I hope the prednisone settles this flare down for you quickly.((((((hugs))))))
 

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Hi Raglet,

Sorry to hear you had a setback. Try not to overdo while on the prednisone. I know it makes you feel like you can conquer the world but you want the maximum benefit. I know when your cns problems increase they tend to stay that way, hopefully that isn't the case this time.

Take care,
Lazylegs
 

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Well Raglet,
I am glad to hear the cupboards will get done. Hope you avoid the yeuck steroid headache.
Does your CNS really make you want to throw yourself off things, I ask because when I was hospitalised with a major CNS flare I felt the same, not suicidal just a strong desire to fling myself off things.It is not funny is it?
X Lola
 

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Hi Raglet

Really sorry to hear that things are heading downhill again. I cant imagine what being on 40mg of pred is like :worried: You must be wired to the moon :hugbetter:

Keep your feet firmly on the ground. Its scary feeling like you want to fly:worried:

Thinking of you and hoping that if those B cells are on the way back that they come very, very, very slowly.......

Lots of love
Joan:rose:
 

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Discussion Starter #12
thanks guys, as ever your support really helps.

Lola, my 'chucking myself off a cliff' definitely springs from suicidal ideation. Part of my cns episodes involve very sudden intense suicidal depression, plus other neurological symptoms at the same time. The suicidality literally happens over night, and my neuro-psych says that this very abrupt onset suggests an organic cause.

But I am doing better, just still turning out cupboards. I'd start on my daughters if she let me (no fear, I am not allowd in her wardrobe !)

cheers

raglet
 

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Dear Raglet, I am sorry to hear you suffer so badly. CNS is a big deal.
Well done on keeping busy. I hope it soon passes for you.
x Lola
 

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Hi Raglet,

You can come and clean my closets ANYTIME!! lol :hehe: Although the airfare may be a bit pricey....

I hope you are feeling better soon and can start decreasing the pred down to a more comfortable dose.

Take care!
Sharon
 

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Dear Raglet,

((((((((((((hugs))))))))))))) :( :hugbetter:

love
Lily
 

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Raglet
Sorry to hear you are not well. Those cns symptoms do hit you with avengance. I hope you take it eazy over the ANZAC day long week end and feel better soon.

Peta
 

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Raglet;505780 said:
thanks guys, as ever your support really helps.
my 'chucking myself off a cliff' definitely springs from suicidal ideation. Part of my cns episodes involve very sudden intense suicidal depression, plus other neurological symptoms at the same time. The suicidality literally happens over night, and my neuro-psych says that this very abrupt onset suggests an organic cause.

But I am doing better, just still turning out cupboards. I'd start on my daughters if she let me (no fear, I am not allowd in her wardrobe !)

cheers

raglet
((((Raglet)))))

I am glad that you are doing better, I am with you at the moment on the cupboard thing, that made me chuckle, I expect to move onto the manic decorating stage.

I also wanted to empathise with this aspect of the disease and the way it presents, it comes on overnight for me as well, it is horrible and very hard to understand or talk to others about. It sounds like your neuro-psych understands this very well, I am fortunate in that my consultant is an absolute gem and understands it very well, somehow the fact that there is an organic cause makes it easier for me to deal with, do you find this? although not at the time that I am loosing all touch with reality and think there is an evil prensence coming in through the telephone wires.tv cables trying to poison everything or standing over me in the bath willing me to drown, and sending me 'messages' about ways to end the torture. Thankfully once I admit to this the steorids deal with it effectively and then I can rationalise what happened.

Hoping that things continue to improve for you. xx
 

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(((((Raglet)))))

I am so sorry to hear this :sad: sending you big,healing hugs :hugbetter: :there:
I pray it all improves for you soon & you can lower the pred.

thinking of you
luv karen x
 

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Raglet,
I hope you feel better soon. :flowery: I know how you feel about the prednisone. I am on 50 mg right now and I'm bouncing off the walls. My body is exhausted and needs rest, but everytime i lay down to nap, it doesn't work. I get so anxious and moody, I'm surprised my husband hasn't moved out.
And instead of turning out the cupboards, I'm eating everything in them:lol:
I don't have CNS issues, but I'm in the worst flare I've ever experienced right now, so I can kind of feel your pain. I deal with serious depression and anxiety as well.
Just know that you are in my prayers!
Laura
 
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