Thought I Was Coping. *might trig*

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Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Sun Sep 01, 2013 12:55 am

Hey,

So it's been a while since I last posted. I was doing alright emotionally, but I've been struggling, gradually more and more for a while. I've avoided posting because I feel like a burden, and I know other people have it way worse than me and I feel pathetic coming to ask for support.

I think the last time I posted I was waiting for the call to go into hospital. I finally got the call, the week we told my consultant not to make it cause my parents were on holiday, but, what can you do, they just never listen.

During my week in hospital I had an MRI scan and two lumbar punctures, as well as various different eye checks. My two lumbar punctures showed reduced pressures but my brain scan showed visible damage to the surface of my brain. Both of these results kind of contradict each other, but with my failing eyesight, and increasing double vision, pain in my head, right arm, both my legs and my ear problems, I would say my lumbar puncture readings were wrong. But, hey, what do I know, I'm just a patient!

While I was in hospital I was quite upset for a variety of reasons. Mainly because the doctor I was under was horrible, my parents were on holiday, I had just been told my brain was damaged and I had no visitors cause I was in the far away hospital. I was also in a 4 bed ward with a couple of crazy ladies, and I didn't really feel like talking to them much. However, by being upset, the doctor then decided to try and convince me this was all in my head. Basically my pressure being down has led him to believe that either

A) I'm responsible for my condition, as in, causing it to get medical treatment. (Mad, I know!)
B) I'm exaggerating my symptoms to get pain relief drugs and/or for attention.
- And finally
C) I'm just making the whole thing up (I think he thinks I enjoy spending most of my time at hospital getting 9 inch needles inserted into my spine...)

Because of any or all of these 3 reasons, he tried his best to sent me to psychiatry. I refused. On the grounds that, I am not making this up. I can't actually change my pressure to suit (if I could do that, I would have done it during my months stay in hospital). I can't cause my brain to become damaged. And I wouldn't even know how to begin to make my eye checks worse, if I wanted to, which I don't, because if my eyesight gets any worse, then I might have to stop driving and I would hate that!

If my doctor took time to sit down with me, talk with and understand me a bit better, then he might be a better doctor, but instead I just feel like he is trying to claim that this whole thing is orchestrated by me, in an attempt to get more attention or something silly. He also fails to realise that this has actually disrupted my life in a substantial way, that I don't want. But he's more interested in trying to make me the problem, that he's failing to actually find out the real problem and start treating it.

Anyway, enough ranting about my consultant!

In other news, my cousin had her baby. A little girl, two weeks ago on Monday. She's cute, but another reminder that I'm not really in this family. I tried to explain things to mum and dad about how I was feeling about this, but they just told me to stop talking nonsense. I think they are really struggling to see how this could affect me so much, but what they don't realise is that I'm jealous of this baby. I know it sounds daft, but this baby is going to have such a privileged life. She is going to grow up with 2 parents that love her, an entire family that adores her and she's going to fit in. She's less than two weeks old, and already she has more than me. She can't even talk, yet she is loved in and by this family, more than I will ever be. This baby is already more important to this family, than I have ever been, or will ever be. I know I don't fit in to this family. I know I never have, but this baby just makes that all the more noticeable. And that hurts. All I really want is to fit in, and I don't really fit in anywhere. Also, everyone is something to this baby. Aunt, uncle, grandparent, great grandparent, great aunt or uncle and even great great aunt or uncle, but me, I'm nothing. I'm also now the only aunt in my family that never sees her niece and to be honest, there isn't much hope of me seeing her either. I miss her. I think this is partly why I wanted this baby to be a boy. So it wasn't a constant reminder that everyone else gets to see their niece and I don't. But, that didn't work out...

On top of this, my brother has been put back in prison. He's supposed to be getting sentenced on Tuesday, and he's looking at being inside for the rest of this year, and into next year. I guess I half expected it, but I kind of wanted to be proved wrong. I knew when he phoned me up while I was in hospital saying he was suicidal that things were bad, but I thought it might just be a phase, but no, he's back in prison, demanding things from my parents, who are so chilled about the whole thing and keep giving in to his demands, which angers me, because I live at home, I'm good, I don't do drugs, I don't steal, I try and do the right thing and I get shouted at if I don't clean the shower, or put my washing out at the right time. My brother goes to jail and they send him money. What's with that?

This weekend I have developed tonsillitis along side a cold. Which on top of my condition, that causes immense pain when coughing or sneezing isn't pleasant! Especially since I can hardly go 10 minutes without doing one or the other.

Tonight I came so close to harming. I went out to get wound dressings because I wanted to cut. It was so strong that I had to search for an open store that sold the kind of dressings I would need, despite this, I've managed to actually stay safe, which is a surprise, but I'm not sure how long I can keep up this act of being 'fine'.

Anyway, I feel like this has just been a massive moan, and that if you've managed to read to here, you deserve a medal!

On a positive note, I've managed to tell my friend (a guy I really like from church) a bit of my past, and he hasn't run away! We see quite a lot of each other, so I'm enjoying this new friendship, although, I want it to be more than just friends, so opening up to him about the stuff I've written here is out of the question for now! I don't want to scare him away!!

Anyway, I really do feel like I've rambled and rambled and I'm really sorry. I'm sorry for not being there for you guys, I faithfully pray for you all, but I'm sure that sounds really pathetic, when you probably want decent advice and not just my prayers, so I totally understand if you don't want to reply to this. That's cool. It's unfair of me to be asking for your support. Letting it all out has been helpful anyway. So, sorry for taking up your time.

Much love, and many prayers,

Ruth xx
Last edited by Beautifully_Broken on Mon Sep 02, 2013 12:04 am, edited 1 time in total.
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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
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Re: Thought I Was Coping. *might trig*

Postby Keziah » Sun Sep 01, 2013 11:02 pm

Hi,
Gosh what a lot for you.

I would say, yes refer me to psychiatry just to get someone to talk to then explain to them that you cannot affect your own pressures, damage your eyes or brain, cause a condition so horrible and that until this struck you had successfully passed a year of college and was doing well and enjoying your degree!! And you are very distressed that a consultant is more concerned about a referral to a psych for a well known medical condition that the dr is not managing well and please could the psych write to the dr or talk to him about how it is impossible for you to cause such damage as all of your notes show. Get the psych ( who is a medically trained dr after all) to read all your physical notes of this illness and then ask the psych to find youa consultant who can treat you physically!! And tell your useless consultant you will gladly have a psych referral so that you can get a second opinion of a medical dr to prove you are being mis treated by him and for evidence for suing and compensation of you continue to deteriorate whilst he fails to do his job properly!!

Well that would be my approach and I would want it all in writing too as evidence!!

Sorry probably not helpful.

So are you still in hospital? Or out again?
Keziah
 
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Re: Thought I Was Coping. *might trig*

Postby Eppie » Mon Sep 02, 2013 6:46 am

Really sorry to hear how hard it's been. I read this yesterday and was a bit stumped on what to suggest. But kezzie's idea to agree to the psych referral in the hope that he can see what's going on and get you to a doctor who can help with the physical illness sounds like an option. Might that be an option for you?
E x
Eppie
 
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Re: Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Mon Sep 02, 2013 3:34 pm

Hey!

I'm currently out of hospital, and my next appointment to see the neuro consultant is the 23rd of October, so unless anything drastic happens, I'm out of hospital till then. I saw the Neurosurgeon a couple of weeks ago and he was very helpful, but because my consultant has changed my diagnosis, the Neurosurgeon can't do anything with or for me, which is unfortunate, because he was brilliant! My worry about going along to see the psych is that he is liable to make an issue, despite the evidence. I think this is a distinct possibility because my consultant is making the issue me, rather than my illness. I've got till October to think about it anyway. And my parents are coming with me to the appointment, because the are really unhappy about this being made about me.

Thank you for your replies, I really do appreciate them.

Love, 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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
Location: Scotland

Re: Thought I Was Coping. *might trig*

Postby Keziah » Mon Sep 02, 2013 10:28 pm

What have they changed the diagnosis to then? You can be under more than one consultant so if the neuroconsultant thinks you have a neuro issue then he treats that, independent of anything this other ( what speciality is it?) consultant has! At one point I had 7 different consultants for physical issues!!!

And there is nothing scary in seeing a psychiatrist, they are a dr and can be helpful. Especially as they are used to dr's saying something is a psych issue and not physical, I know I have been there!! At one point I had a dr say it was my mental health issue and not a stroke I had, uh!!! I paid private for tests to prove otherwise I was so angry! And the most useful person then was a psychiatrist as they know what can and cannot affect physical health conditions!!
Keziah
 
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Re: Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Mon Sep 02, 2013 10:41 pm

My consultant hasn't changed to diagnosis to anything. He's just taken my diagnosis away. And he hasn't told me this, my neurosurgeon told me. So I'm currently on 16 meds a day for a condition I don't have? So that's going to be my opening when I see the consultant. I don't know what speciality he is though. :/

I'm going to think about going to see the psych, but I am genuinely concerned that he will claim it's me too. :/
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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
Location: Scotland

Re: Thought I Was Coping. *might trig*

Postby Eppie » Tue Sep 03, 2013 8:45 am

Glad your parents can come to appt so that you have back up. It sounds IMMENSELY frustrating for you, and I'm so sorry.
Do you write out what you want to get across in your appts so that you have prompts and reminders of what to say? I find that can be helpful for me.
E x
Eppie
 
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Re: Thought I Was Coping. *might trig*

Postby Keziah » Tue Sep 03, 2013 5:32 pm

Psych will not claim it is you if you on 16 meds a day and they giving you physical treatment. Why not ask gp to refer you back to the good neuro and ask neuro for their diagnosis and for them to treat anything neuro based?
Keziah
 
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Joined: Wed Jun 29, 2005 9:42 am

Re: Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Thu Sep 05, 2013 11:40 pm

Another frustrating day.

I had a bad night last night, virtually no sleep due to being in so much pain. I managed to get an emergency doctors appointment this morning though to discuss my pain. To be honest it was a waste of time. I got told to take paracetamol and ibuprofen, which does nothing. I had phoned my consultants secretery yesterday, and she said shed be back in touch yesterday or today. Since I didn't hear anything yesterday, I phoned today to find out that the secretary had gone on annual leave, but left no follow up numbers for me. That whole thing is a phrase.

I'm feeling quite vulnerable just now. Emotionally struggling, physically, really struggling. :(

Thanks for your replies :) xx
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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
Location: Scotland

Re: Thought I Was Coping. *might trig*

Postby Keziah » Fri Sep 06, 2013 6:54 pm

I would go to gp and demand referral to a pain centre or whatever it is called or a referral to a different hospital and dr for a second opinion on your treatment which you are entitled to.
Keziah
 
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Re: Thought I Was Coping. *might trig*

Postby Hash » Fri Sep 06, 2013 9:40 pm

Cant you phone up and ask to speak to your consultant direct.

Your GP is rubbish we all know that why dont you ask for another refereal to an alternative consultant. I think that is the only hospital in Glasgow that deals with neurology.

Hash
Hash
 
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Re: Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Fri Sep 06, 2013 11:31 pm

I'm going back to the GP next week to demand support. The GP said that it's probably a good thing that I don't have an appointment with the neurologist, because it shows how headache changes over time. What everyone fails to understand is that the headache doesn't really change, it just gets worse!!

As Hash said, the hospital I go to is the only and best centre for neurology in the West of Scotland. So I really don't have any other choice of hospital. My consultant is a waste of space. He's so difficult to get a hold off. He's a nightmare.

Thanks for your replies!

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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
Location: Scotland

Re: Thought I Was Coping. *might trig*

Postby Keziah » Sat Sep 07, 2013 10:52 am

But if it is the best centre they should have more than one dr there for you to see?
Keziah
 
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Re: Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Sat Sep 07, 2013 7:33 pm

You would think, eh?! But no! :( The doc I see is supposed to be a specialist, but I'm not convinced. I have been referred on to another doctor who specialises in headaches. My comment to that was, "don't you think I should have been referred to him first back in April?" Anyway, I'm just waiting for my appointments, while I suffer in agonising pain!!!!
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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
Location: Scotland

Re: Thought I Was Coping. *might trig*

Postby Keziah » Sat Sep 07, 2013 7:38 pm

Sorry about the pain but great about the other referral. Well of your original consultant is the only consultant where you are I would consider a second referral to same specialism at another hospital even if have to drive a long way - but that is just me. I was wrongly diagnosed or rather not diagnosed with a physical health condition for ages; only on insisting to a referral did I get right treatment and with the choose and book system a patient can go anywhere these days. My theory was I only go twice a year now to see consultant so worth a whole day of travel.

Pain sounds awful. Hope new dr can help.
Keziah
 
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Re: Thought I Was Coping. *might trig*

Postby Hash » Sun Sep 08, 2013 12:59 pm

Kezzies got a good point you could go anywhere
Hash
 
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Re: Thought I Was Coping. *might trig*

Postby Keziah » Sun Sep 08, 2013 7:01 pm

Yes, the joy of our NHS now is you can go to any hospital for any treatment and you are entitled to a second opinion also, which this would be. So if you worked out what speciality of consultant you wanted you could pick any hospital to go to. And as you say there is only one hospital near you with this speciality and only one dr that does it you are totally in your right to go ANYWHERE as there is nowhere else near you!!

I had a second opinion on a physical health issue. Sadly the consultant said surgery was not an option, but at least I know I saw someone at the top of their field who even bothered to show me all the scans etc etc and explained it to me, unlike the first dr I saw. And I travelled 2hrs each way happy to do that, knowing it was a one or two times visit.
Keziah
 
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Re: Thought I Was Coping. *might trig*

Postby sally » Thu Sep 12, 2013 12:53 pm

How are you feeling this week?

Catching up on this post all in one go having been away, I am really saddened at how unhelpful the doctor has been on your last admission. When is the follow up appointment with the nice consultant? I cant imagine what it is like to be in such pain for this extended time.

How are you coping with your brother back in prison. Are you expected to visit him?

Also, you talked about your new niece, how lovely she is, but that her arrival had also brought to the surface your sense of not belonging. That sounds so painful and very difficult thoughts to think through yourself, let alone explain to your parents.

I am praying for you in all these areas,
Sally
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Re: Thought I Was Coping. *might trig*

Postby Beautifully_Broken » Sat Sep 14, 2013 10:40 am

This week has been tough. The volume of pain has been intense and it's making me grumpy and angry. I'm waiting on a letter from the hospital giving me an earlier appointment, next week. I'm not holding my breath though. :(

It's hard having my brother back in prison, I guess though if it means he's safe and off the drugs, I'm happy!

I think I'm coping, kinda. I want to be pain free, that would make a massive difference to life.

Thanks for your prayers! They are so appreciated!

Ruth xx
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...
Beautifully_Broken
 
Posts: 1066
Joined: Sat Oct 11, 2008 3:24 pm
Location: Scotland

Re: Thought I Was Coping. *might trig*

Postby sally » Sat Sep 14, 2013 1:40 pm

I'm sorry the pain has been so intense. I agree that a break from the constant pain would be such a relief.
I will join you praying for your appointment to be brought forward.
best wishes,
Sally
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