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ingemlb
03-11-2014, 06:20 AM
Thought I would discuss this topic. After going onto Prednisolone I must have had a nervous breakdown in hospital. Not only the Pred. We had a year from hell in 2013 with health issues and family trauma. Son who suffers from Schizophrenia had a bad psychotic episode (he is 40) and we had to make a very hard decision and move him into supported accommodation all against his will but made possible by the fact that he was in a locked psyched ward and we had to take out an intervention order to stop them from sending him home. long story. won't go into it all. but let me say as a parent it was the pits having to do this. It's the system that let us down and lets everyone down who has a relative with mental illness.

Mum who lived in NZ had many bad health episodes requiring trips over there (I had power of attorney which I kept when Mum moved to nZ to live with my younger sister so that would take the burden off her) and in the end she broke her hip and that was the beginning of a slow road to death. She was suffering with Bladder Cancer and Diabetes and not doing well in any case but the broken hip which happened in August finished her off and sadly Mum died a week before Christmas and the funeral was 3 days before Christmas. We organised a joint funeral in Australia and NZ via phone hookup.

I had health issues all year. Then in October sinus surgery. In November spent a week in Hospital whilst on holidays in South Australia and came home to the news Mum was dying.

ok .... why am I sharing all this (and probably have talked about it elsewhere in any case) because after the Prednisolone introduction I became a total nervous wreck and would break out into tears at the slightest provocation especially if anyone was unlucky enough to walk into my hospital room. In the end my specialists called in a Psychiatrist to check me out.

He said to my husband "is she always this "racy" ?? I had no clue at the time what that meant ..but figure it was because I was talking at a rate of knots.

Well I am still this "RACY" and will make another appointment to see what can be done about it. Because unless my husband is here when we have visitors and (with much effort on his part) stops me from gushing the poor visitor never gets a chance to get a word in and I never shut up.

Unfortunately I am just as fast and gushy in my writing so I apologise for the looooong posts and will try to control myself but can't promise as I can't seem to control my fingers same as I can't control my mouth. Hopefully my Psychiatrist will have some tricks up his sleeve because my "RACY" mind also keeps me awake and adds to the insomnia :(

MikeG-2012
03-11-2014, 07:55 AM
If any of you have seen the movie "Over the Hedge" (http://www.youtube.com/watch?v=9p-0FxJ6kvQ) may remember Hammy the squirrel (http://www.youtube.com/watch?v=719vHhi1lGI) on the energy drink (http://www.youtube.com/watch?v=z-eMdMsMgCU). When I was on the high-dose prednisone, I felt liek Hammy a lot of the time. So, I made a plastic coated/laminated sign and hung it outside my office with "Today's Hammy Factor" with a HIGH, MEDIUM and LOW setting. Every day, I would check the box so my student employees had a clue where I was. One of my students actually grabbed me by the shoulders one day and said to me, "Focus Hammy, FOCUS!!" I told her "Good one!" and we both had a great laugh.

It does get better. It takes TIME, but it does get better. When I was on the major doses of pred during the RTX infusions, It was a lot easier to handle than a year before.

Hang in there, your body will adjust a LITTLE BIT and you will be able to slow down to a normal place--eventually.

ingemlb
03-11-2014, 08:01 AM
LOVE it . Thanks Mike :)

annekat
03-11-2014, 12:02 PM
I wanted to insert a pic from my photo files of a squirrel or chipmunk with what looks like pred cheeks. I used to be able to browse my computer for a pic to insert (as I still can for changing my avatar). Now it asks for a URL and doesn't give the option of browsing one's computer. Does anyone know why this change? There have been ways offered to convert files to URLs before that haven't worked for me. I guess I need to start an online file of photos somewhere from which to choose. But I liked the old way of being able to choose a photo from iPhoto (my Mac photo program) or perhaps one that had been saved on my desktop.

BookNut
03-11-2014, 01:02 PM
I know EXACTLY what you mean! And I had far less reason to be "racy"! What an incredible and stressful year for you. I am constantly amazed by the human spirit. I commend you for surviving all of this.

And prednisone sure does make you "racy"...and far worse for some folks. Here is a blog post I wrote about the effect of steroids. Mind you, I was on 125 mg of prednisone via injection. This is my brain?This is my brain on steroids « Wanderings? (http://wanderings.edublogs.org/2012/08/26/this-is-my-brain-this-is-my-brain-on-steroids/)

BookNut
03-11-2014, 01:08 PM
OMG Mike. This is SO hilarious! I was pretty ADHD in my job as a high school librarian. My assistant gave me a sign similar to this. So prednisone just added to the merriment. Thankfully for all my students and colleagues, I did not have to take any until after i retired!!

http://www.ironydesign.com/gallery/theysayihaveaddChickenLOGO2.gif

pberggren1
03-11-2014, 03:21 PM
I do know what you mean about the racy mind. I remember it was quite bad at the high doses of pred. At times I would think so fast that I could barely figure what was going on. I would play pool when it would come on and I could not focus on the game even if I tried. I still get it now and then, maybe once every few months, but way less severe and only lasts maybe an hour or so.

Alysia
03-11-2014, 05:22 PM
Hi Inge,
I am sorry for you, for the loss of your mom and for the rough time you are going through with your son. one of the toughest things to live with... no wonder that you also became so sick: too much stress...
I guess that the "racy" mind is because of the pred. the psychiatrist was asking if you are allways "racy" in order to find out if it is because of the pred or if it is because of any other disorder... (like bi-polar).
I was working in psychiatric hospital 11 years (as psychologist), so I know few things about how psychiatrists are working... what is important is that you remain coherent and that you are not loosing the "train of thought": it means that once you are talking about something you are not lost in another thing without returning to the issue and making it full and clear.
I think you are doing it very well. so dont worry.
sometimes, also, one can become "racy" if he had too much painful feelings which are unbearble, and then the "race" is in order not to stop and feel the pain. kind of mental survival. maybe you still need to mourn the loss of your mom :sad:
please share with us what you are going through.
you are touching my heart and prob others' heart :hug1:

Alysia
03-11-2014, 05:25 PM
http://media-cache-ec0.pinimg.com/236x/84/f7/b3/84f7b37dbc54ce8ac8827f76c1f9a356.jpg

ingemlb
03-11-2014, 08:21 PM
Thank you everyone. It is good to hear that we all understand this condition and to know that some of you went through it and came out of it. I think the mourning is still being pushed aside. It's all too much to bear right now. The day I came out of hospital our son had another psychotic episode and in his case it was actually also due to repressed mourning. He loved his grandmother so much and she took off and moved to NZ 2 years ago. Peter finds it hard to let go of things of his childhood and is still not over Dad's death (his grandfather) which occurred in 2005. Also quite suddenly. Nasty illness. MSA. Then I get sick and he pulled himself together the entire time I was in hospital. Each day sent me uplifting messages and told me to pray and read the scriptures and that he was doing the same. He had shortly before given up smoking and drinking cold turkey and turned into a vegan overnight so he was dealing with loads of stress. I only realised afterwards how scared my illness made him. His Dad and I are his lifeline. Since he has moved out of home we have finally been able to become his parents instead of his "enemy" always having to "teach" him or call on the doctors. He doesn't believe his diagnosis and thinks it's all demons chasing him. He has a deep pentecostal like faith where he can't acknowledge anything negative or any form of illness, doing so would give it power. We can't shift him from this thinking but for a couple of months this year he became almost normal in his thinking. When he was moved out of home they also put him on injections for his antipsychotics and those have stabilised him as before he was totally uncompliant with his medications.

On the day of my release he finally collapsed. It was all too much for him and before he became totally ill he wrote a poem he pasted into FB. As its on the public domain (he lets everyone read his stuff) I will share it here. That poem for the first time in ages showed me quite openly what was going on in his mind. The Dilemma when I ring him and say "how are you?". Being someone who is ULTRA honest he finds it hard to say "I am well" when all hell is breaking loose but admitting he is unwell means he gives that negative force power over him. So now I am far more careful as to what I say to him each day.

He told me the other day he was getting paid and going shopping. AT night I asked him, did you go shopping? His reply: "why must I now go shopping? I don't need anything but if you feel I should go then I will go now because the shops are open tip midnight. Everyone is always telling me what to do etc etc" I pointed out "Peter i am just chatting. I am not telling you to go shopping, just making conversation. I am sorry I don't always know the right things to say".. He smiled then and relaxed. It has taken a long time for us to get to this point.

The poem was therapeutic for me. The next time he was at our place pacing the yard looking miserable, I put on a dressing gown and went outside, gave him the biggest hug ever and said "Peter ..you have no idea how much I appreciated your daily messages when I was in hospital and your frequent visits. Apart from Dad you were the only regular visitor and the only one who tried to cheer me up every day. I want to thank you darling. And I want to say I am so sorry that this week I have not been able to be there for you when you are going through such a rough time". Well he was in tears and it was a healing moment.

Not sure if the poem is obvious to everyone here but it lists all the things that pushed him over the edge. He has since recovered and is much more stable again and we communicate again each day. He has dropped in a couple of times, once to stay the night and that was good too. It' has been so difficult because we didn't want him to think he could sleep here every night but that he needed to get used to being independent of us. He is 40 and it was high time and much has improved since he has lived away from us. Much has also been very painful for both him and for us. But we still feel we made the right decision.

WE FLY A BIT MORE
Peter Danaher (c)
27/02/2014

Twenty three years
I suffered my fears.
Bound around the mind
By Satan's wild wiles.

I may look a little off at times
I may sound loud and strong.
But always know the reason for this.
For its the lack of a hug
It's the lack of a word.
It's a judgment spoken against me
When I'm upset with the world.

Of course you don't love me
Of course you reject.
Of course there is injustice
Of course you drink wine that is red.

"Peter are you sick?"
I say, "No I have faith".
But, "Peter I'm concerned,
I don't know why but its in my head and my face."

Be concerned for me
Go and lock me up.
Go and judge me crazy
Force it upon me like a cup.

Why did it happen?
Why do you disagree with my faith?

I am too strong for this world it may seem
You keep locking me up when I dream.
I had a smile as a boy
My mind imagined the stars.
I was holy and chaste
But then the suffering crashed my car.

"Mum its ok.. I shall learn to teach myself".
And so alone
I read the books.

I am still alone reading books
I am in the nursing home.
I look at the stars
Their music heals all the gnomes.

"So Peter how are you today?"
You ask me right now
I answer with a bold word
"I am fine, its ok."
But then I think of my Opa,
who asked me the same.
And I said I was fine
But I was not and now he's not mine.
So I say,
"But I was the victim of injustice today".

So what's the conclusion Pete?
Where are you now?
The psychiatrist is concerned
Like my father was before bondage I earned.

My mind has been judged
My advocates turn up sick
My mother was so ill.
My church does not call
My brother is busy.
My mind is confused
I am wondering what to do.

There is nothing much left.
But to tell God I won't quit
To pray to learn armor
To improve just a bit.
To realize everyone suffers
We all go through it.
And again we are free
This time more mature.
Wiser than before
This season we do fly
We fly a bit more.

Alysia
03-12-2014, 04:12 AM
wow, Inge, what a beautiful touching poem. so sincere. so sad. def sane. your son is gifted.
and you are a wonderful mother. thanks for sharing.

ingemlb
03-12-2014, 06:00 AM
wow, Inge, what a beautiful touching poem. so sincere. so sad. def sane. your son is gifted.
and you are a wonderful mother. thanks for sharing.
Thank you Alysia :)

ingemlb
04-07-2014, 09:08 PM
Saw my Psychiatrist today re ongoing Pred caused neurological issues. Still "racy" both mentally and physically (literally "racing" through the house when I can) and can't shut up my mind and can't get to sleep. So I have been put back on Melatonin and ad hoc Valium. We will see if the next reduction in Pred fixes things before considering other options. I am now updating this via my main update thread (http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/3849-update-ingemlb-4.html). Just thought I would make a quick post here to complete this one.

Alysia
04-08-2014, 12:49 AM
Hi Inge.
I am sorry for the "racing" that the pred is causing you. sounds exhausting.
are you taking your pred in the mornning (better) ?
not sleeping enough is tough. I hope the melatonin will help you. please tell us if it does.
at least I hope that your mood is nice with the pred.... is it ?
I am posting something to make you smile :wink1:

Alysia
04-08-2014, 12:51 AM
https://scontent-a-fra.xx.fbcdn.net/hphotos-frc3/t1.0-9/10175058_608683805884972_1121504266_n.png

ingemlb
04-08-2014, 12:54 AM
Yes very exhausting:)
I have to take insulin with breakfast and pred with lunch. Not sure why but thats what the endocrinologist ordered.

Mood is usually ok :)

ingemlb
04-08-2014, 12:55 AM
Lol alysia. Thanks:)

Alysia
04-08-2014, 12:57 AM
the earlier you take the pred, it will less disturb your sleep. ask your endo about it. I see that you are awake now. it must be the middle of the night over there now :sad:

ingemlb
04-08-2014, 01:03 AM
1 am. Slept 1 hour.
The nurses already tried to get me to take it in the morning but the endo was adament had to be at lunchtime. Has something to do with the novamix insulin.
Heading back to bed to try again :)

Alysia
04-08-2014, 01:06 AM
have a peacefull night :hug1:

windchime
04-08-2014, 05:01 AM
I've been taking mine in the morning with my novamix insulin since Nov and I've not had any adverse reactions. I will say that i haven't had any sleep problems since dropping below 40.

BookNut
04-08-2014, 09:51 AM
I SO understand! Hopefully reducing the pred will help you. 2 years ago I was in the hospital. Not sure how much pred I was on. The hospital bill indicated 125 mg via injection 5 times per day. The doctor's report says 60 mg injected 5 times a day. Either way...a LOT of prednisone. In both reports the amount was reduced every day...but having it spread out over the day meant I got about an hour or so of sleep per day.

Here is my blog account of my experience:

This is my brain?This is my brain on steroids « Wanderings? (http://wanderings.edublogs.org/2012/08/26/this-is-my-brain-this-is-my-brain-on-steroids/)

Hope you have some projects to channel your energy into....and that you sleep whenever you can!

ingemlb
04-08-2014, 11:06 AM
Got a bit of sleep in here and there but still not enough :( Will have to have a power nap this arvo :)