Update

[Keziah]

Are you still in hospital Ruth?
It sounds awful, trying to get the treatment you need, or knowing what is needed. Glad you had those few hours - shows that something more long term is needed though!

[Beautifully_Broken]

Hey!

I'm home. I know I should probably still be in, but I'm as well being miserable at home than I am in hospital I suppose. Being home is hard though. It means you're expected to answer your phone, reply to texts and want to go out all day. I mean I want all that, but I know that I got to look after me and that means just doing what I can. Although, it's easy to say, might hard to do though!?

Since I can't keep my eyes open, I best try and get some sleep.

Night!

[sally]

Hello,

I'm sorry that this stay in hospital has turned out so disappointing. You sound drained, exhausted and low; and I'm not surprised with how this has dragged on without any solution while you are in such agony.

You have done the right thing to ask for a 2nd opinion and I pray that will be helpful. Will you be staying in hospital until that happens?

I will definitely keep praying for you,
Sally

[sally]

Im still praying for you!

best wishes, Sally

[Beautifully_Broken]

Sorry for lack of reply! Despite not doing anything time seems to be running away at the moment!!

I'm out of hospital. And I'm really just waiting. For pain relief, my second opinion. Anything really!

Managed to get out this week and most of my Christmas shopping. The rest I've ordered online, so now it's just wrapping and card buying to do.

Thank you for your prayers, as I've said, they are so needed and so appreciated!

Love, Ruth x

[Keziah]

Oh great you are getting a second opinion after all. That is encouraging!! Perhaps getting a definite diagnosis and treatment plan for recovery would be really helpful, rather than what you seem to be getting now.

And wow, to having done Christmas shopping ( am jealous, have no energy to go shopping as only time I can go is a sat which is a nightmare!!! Online sounds a great idea [grin] hope it not taken too much out of you.

[Beautifully_Broken]

Just thought I'd get you up to speed! I am back in hospital after collapsing in the bathroom following a prolonged period of being sick last night. (I'm told this is what happened, the last thing I remember is getting out of bed) I was rushed by ambulance to hospital and kept in resus till I stabilised. Temp was 38.8 and heart rate was 145. Had another LP and pressure was up. I also have swelling behind my eyes which is a deterioration. I just need to wait and see what happens now. :/

Anyway, just letting you know! Going to try and sleep, not slept since I got up yesterday!

[Eppie]

Oh Ruth, I'm so sorry to hear this
Did you get a second opinion yet or are you still waiting?
Hope the hospital can respond quickly and help you now that you are back there.
E x

[sally]

Hiya BB,

That all sounds really awful and I'm sorry you are back in hospital.
As Eppie says, I hope this stay will be helpful. I'm not sure how anyone could suggest all those symptoms are just psychosomatic!

I'm praying for you right now,
Sally

[Hash]

THinking of you and praying

Hash

[littleone]

How are you doing BB?
x

[Keziah]

Hi are you still in hospital BB? Did they decide to operate? Wonder how your 2nd opinion has gone?

[Keziah]

Hi are you still in hospital BB? Did they decide to operate? Wonder how your 2nd opinion has gone?

[Keziah]

Hi are you still in hospital BB? Did they decide to operate? Wonder how your 2nd opinion has gone?

[Frodosgirl]

Praying for you x

[Beautifully_Broken]

Hi!

Sorry, since I got out of hospital things have been mad!

I'm out of hospital with no treatment plan. Apparently the neurologists don't know what's wrong with me, but I'm not convinced that's strictly true. I've to try an infusion of IV drugs which I was supposed to be getting in January, but the appointment is for March, which isn't very suitable cause I'm due back an uni 2 weeks after my March admission date, but they won't change it.

My second opinion has been rejected which I'm annoyed at. I've just got another doctor from the same department doing nothing.

I've also managed to pick up the cold/throat/chest infection thing going round which is not helping my head and is completely draining my energy.

So yea, all in all things are pretty rubbish, but just gotta keep going!!

Love, Ruth x

[Hash]

Rest easy my friend put your feet up and rest up.

Hash

[Keziah]

Hi - oh it is a horrible coldy thing right now, I have had it also.

Well if they are going to do an IV thing, sounds like they know you need some treatment - could you phone up and ask for it to be sooner, as does not sound as if it is a clinic thing, but a nurse led treatment?

[sally]

Hello Ruth,

is is a relief to be back at home for now? I agree with Kezzies idea to phone up the consultant's secretary to request the iv admission can be brought back to January as planned.

I pray you will get over the lurgy cold thing quickly. I can't imagine what that's like for you with your constant extreme headache already.

best wishes,
Sally

[Beautifully_Broken]

Hey!

Thanks for your replies.

It feels like longer since I last updated, but it was only Friday! I've been feeling pretty awful. Headache is getting worse again and the pulsatile tinnitus is getting unbearable. It's got so bad that I can't hear out of one ear. It had died down after my lumbar punctures and they had drained some fluid, but it's peaking again. I can feel it!! I have already spoken the my neurologist's secretary. There is no way that the appointment can be brought forward/changed and there is not much chance of a cancellation as people know about these appointments so far in advance. I also asked if there was any chance of this treatment taking place at another hospital in Scotland, but this is the only hospital licensed to carry out this treatment. So feeling pretty angry, because if this doesn't work and they then decide to do treatment, I can't take it because I'm due back in uni a fortnight later for placement. But I'm pretty much just in the hands of the neurologists and I have to go along with what they say. It is kind of nice being home, but feeling kind of forgotten about as I've not to see the neurologist before March. I'll never last to March, but I really don't want to hit crisis again. It's too much. I can't keep living in 2 places.

My coldy thing refuses to go away. I think everyone has had this thing going around. Mine is in my throat mainly, and I have a bad cough. I'm not that bothered by it until I take a coughing fit, and then I feel like my head is about to explode!!

On top of all this physical stuff going on, emotionally I feel like I'm falling apart. I know that it's partly due to all the stress surrounding my health but it's also partly just feeling rubbish and stressing about my future. I'm not sure I really want to go back to uni, although I'm not really sure what I'd do instead. I think being off has caused me to lose a lot of confidence. I'm not sure I could do uni. I'm not academic and I really don't know if I want to spend any more time in a hospital. I have to go back and complete first year, even if I don't do any more. Sometimes I think I could maybe do it, but then there's times where I know that I couldn't. And I keep trying to convince myself that if I felt better, I'd feel differently, but I'm not so convinced really.

The past few days as well, I've been really triggered. I really want to self harm. I know I shouldn't. I know it's bad. But I still want it, so badly. And I don't really have anyone to tell up here as everyone thinks I'm okay. Just physically ill, but I don't think people really understand that this is really getting to me mentally.

Anyway, I've ranted sufficiently.

Ruth x