Finished. ** Trig SUI ***

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Re: Finished. ** Trig SUI ***

Postby Keziah » Mon Jun 10, 2013 7:04 pm

thanks for update.
Sounds encouraging they let you out of hospital. hope they regularly monitoring you and I guess you know if things deteriorate to go back to hospital etc.
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Re: Finished. ** Trig SUI ***

Postby sally » Thu Jun 20, 2013 1:40 pm

Hello Ruth,

Hash has kindly let us know you are home from hospital but you are too poorly to post.
I am so sorry about how much you are suffering.
I just wanted to write a little hello and I promise that we are still thinking of you and praying for any moment when you do brave using your computer at all. No need to reply.

sally
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Re: Finished. ** Trig SUI ***

Postby Beautifully_Broken » Thu Jun 20, 2013 7:38 pm

Hey!

Things have been rough since getting out of hospital. Lot's of pain and weird feelings in my body which is made worse by the side effects from the medication I am on. I seem to have all the side effects, but none of the benefits.

Yesterday at my consultant's appointment, we discussed they way forward after I explained to him that fortnightly appointments with him were good, but that I felt nothing was really coming from them. He didn't really agree, but then, he's not the one ill. Anyway, yesterday at the appointment my mum and my neurologist had a great wee chat, while I sat getting more and more angry with them both. Neither my consultant or my mum is keen on surgery. I am aware of all the risks and things that can go wrong, but feel that if I want a life, then it's the way forward. However after my consultant saying to me that he would put me forward for surgery my mum and he came up with a plan to see how the medication goes till September, and if there is no improvement by then, we go for surgery. I kind of agreed to this, because I felt like I was in a really awkward situation. I want the surgery because I want to be well, but it is not a routine operation like getting my appendix of gallbladder out. I also know that my body doesn't really appreciate general anaesthetics and that causes problems. I also feel like this is totally my decision and I am being advised against it by the doctors, which I understand, but waking up feel this ill everyday till September fills me with dread. It's not like when I got my appendix or gallbladder out, they were emergency and necessary, I'm feeling like if anything was to go wrong everyone would say 'I told you so' or 'You brought this on yourself' and I can't deal with that.

Also, this is really beginning to impact my mental health. It's depressing, and I have thoughts that I shouldn't have. I'm confused. I'm tired. I'm angry. And a bit annoyed that the people who are supposed to care the most for me and advising that I remain in this state till September. It's like it's too much effort for them to have me in hospital. But living in this amount of pain in too much for me.

Sorry for the rant. I really appreciate the kind messages and prayers. Thank you.

Ruth x
With Jesus I can take it,
With Him I know I can stand,
No matter what may come my way,
My life is in your hands.

It's lonely when you don't even know yourself...
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Re: Finished. ** Trig SUI ***

Postby Hash » Thu Jun 20, 2013 8:16 pm

Dear Ruthee,

I am a little confused as on the debate we had on Facebook it seemed it was your decision to pause things til September but now reading this it seems it was your mum and the consultant that came up with the decision themselves.

It all seems very tricky! You really need to be praying and asking others for prayer for wisdom.

I am sorry you have thoughts that are not good and your feeling bad about things.

Hang in there and I will get the Mulberry Listening line to pray for you and put you in the book.

Hash
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Re: Finished. ** Trig SUI ***

Postby asc » Fri Jun 21, 2013 10:31 am

I'm so sorry, Ruthie - it does seem a long time to wait. I suppose there is no possibility of a compromise, such as giving it another month? Are they altering your medication at all? Are you still having lumbar punctures and, if so, how have your pressures been?

Have you been on www.iih.org.uk? Some of the stories - like the first, are horrifying, but some are inspiring, and there is a forum which looks as if it should be helpful.
Ann www.annspoetry.weebly.com / www. annssmallpets.weebly.com
"My grace is sufficient for you, for my power is made perfect in weakness" 2 Corinthians 12v9
"You are God's masterpiece." Ephesians 2v10 God doesn't make junk!
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Re: Finished. ** Trig SUI ***

Postby sally » Fri Jun 21, 2013 12:54 pm

Hello Ruth,

the prospect of the level of pain and illness you are experiencing continuing until September must be depressing. Will you continue seeing the consultant fortnightly. If you still feel you would prefer the surgery more quickly, perhaps you could talk to him about that the next time you see him?

I can understand your worries about the surgery. The doctors are the ones who have introduced the possibility of surgery so I hope they wouldn't ever think to blame you if it ended up not being effective. As Hash says, we need to be praying for wisdom and Gods guidance in what the best treatment would be for you, so you will finally feel better and be able to get on with the things you want to do.

praying for you each day, Sally
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