Here we can all be heard for a little while. Part 3

Waves_and_Smiles

Yes, because his head consultant is a vasculitis specialist they are very used to dealing with the condition because patients with it from other hospitals are transferred there to be under her care as WaSp was. All of the staff understand a lot about what they are dealing with and are quick to reassure me that even though this seems terrible to me to them it is actually a common pattern for the condition when it is in crisis. Nothing is phasing them at all and they are very calm and cheerful and told me that hopefully in a few weeks I will be teasing him about arsenic-filled oxygen bottles.

I am not actually bothered by the inspection at all this time oddly enough. It seems such a minor concern compared to everything else going on. At least the flat is already tidy, I have resorted to hand-washing clothes for something to do now!

They just called me and said the consultant has had a look at him and they believe he has steroid-induced psychosis. He is on 60mgs which is very high. They cannot reduce the dose however because it is only thing keeping the condition from doing further damage until the immunosuppressents kick in, Once they do they will lower the dose and he should regain lucidity. Ironically WaSp is more psychotic than me right now.

pollyanna_26

Its wonderful you are being kept up to date so regularly on how things are with WaSp.It saves a great deal of worrying and wondering when you are being given clear updates .


Have you sat down yet? I don't know if you remember Kim and Aggie the cleaning gurus some years back but I was beginning to think you would be the next big thing in cleaning. It did make me laugh when you said you felt you could run the length of the country! I suppose it would mean no taxi fares to the hospital . That's a powerful adrenaline rush. It good to read the actual inspection isn't worrying you .


I know you had a food delivery but have you made sure you've eaten today , stayed hydrated and remembered your meds? If the tiredness is finally kicking in a book, some music or just relaxing would be an idea .


This is where Pyxis used to drop by with amazing animal pics and Elsien would tell us about Gitdogs adventures .
polly

calleyw

WaS,


You are doing really well at the moment. Its hard when you have someone in hospital for a while.



Thats great news he has a vasculitis specialist dealing with his care. They are few and far between but they know there stuff. It will be a long haul and even though it sounds awful an induced coma it allows the body to rest and deal with the trauma.


My thoughts are with you and WaSP. And with any one else who needs them. As well as hugs, squishes and handshakes



Yours


Calley x

Waves_and_Smiles

Funnily enough I just forced myself to sit down and eat quiche and salad. It tasted like cardboard and I am not hungry at all but I know I have to take care of myself.

I am going to try to stop jumping around the flat now and watch a Stephen King film, I like Stephen King films. I need to leave myself a bit of housework for tomorrow in case I can't sit still again and I need to try to calm down before bed if I have any hope of sleeping. I have biscuits and hot chocolate and a blanket, doing my best at self-care.

Oh, and they now realise it isn't Rheumatoid Vascuilitis, it is something called ANCA Vasculitis with GPA. It used to be called Wegeners Disease if anyone wants to learn about rare disorders. The plasma exchanges take the nasty ANCA cells out of his blood and put back healthy ones. They will keep stripping them out daily until they stop appearing.

pollyanna_26

I'm glad you ate even if it tasted like cardboard . I've taken my eye off self care at times in the past but learned you can't help anyone unless you take care of yourself too.


If you run out of housework tomorrow would it help to make a little diary of the positives with WaSps care , the fears you've faced and found a way to manage while avoiding meltdown?


Enjoy the film . If I read a woman in Wales has been scrubbing the pavements tomorrow I'll think " Oh that'll be WaS she must have run out of housework"


Wishing you a restful night.
pollyx

dandy-candy

Hugs and strength to WaS and WaSp.

Today has been a weird day of galloping anxiety and paranoia. I decided to go out on my own to look around the local shops because last week I barely left the house and only when accompanied. I had to pay by phone and it doesn't confirm how long you have paid for it just says "vehicle parking confirmed " so I was worried I had accidentally put in 20 mins instead of 120 mins.

I wasn't after anything in particular, it was just about getting out, so I just wondered aimlessly in and out of about a dozen shops. When it got close to leaving time I suddenly thought "What if someone thinks I'm shoplifting? What if they stop me and I miss my parking time limit and get a ticket?" And then scenarios in my head of going to court etc etc.

I drove home rather stressed and am trying to relax. It is ridiculous and I know it is ridiculous, but there's a part of my brain that won't shut up and constantly undermines me. I can't seem to squash that inner voice down and I don't know what to do about it. I don't really want to go to my therapist again as she didn't really help the last few times, and I don't want to go to a new one as I have such a huge backstory it would take about 10 sessions to get her up to speed! Are there any books that anyone has found useful in getting control of the negative thoughts?

[Deleted User]

dandy-candy wrote: »

Are there any books that anyone has found useful in getting control of the negative thoughts?

Interested in the answers to this, negative thoughts have always been my most self-destructive behaviour that I can't make go away

Waves_and_Smiles

I am so sorry to hear you have those thoughts Dandy, I have them too as part of my OCD. Have a look online for CBT techniques to control intrusive thoughts. I use a lot of techniques myself, there are many to choose from so it is a question of trying them out to find the ones that work best for you. There are also breathing exercises to try to lower your adrenaline (which makes the thoughts worse). It is controllable, it just takes a little practice. Hang in there.

dekaspace

My life is doing ok, drained at work though I am gradually getting more confident at it annoyed at social work though told me as I am working I don't need support,


I am very drained in evenings, I also found out that relative of mine is sending his partners family a lot of cash (hundreds a month) but not bothered to pay me back a penny he owes me.

Waves_and_Smiles

I was woken at 3am and 5.30am last night. At 3am the hospital called to say WaSp was sitting on the floor refusing oxygen and could I please phone him. I tried 5 times before the consultant picked up the phone and told me WaSp wouldn't answer as he doesn't believe it's me because I am in India! That was interesting. The consultant said he would continue to try to reason with him.

At 5.30am the consultant called again. Richard's oxygen stats had dropped to 64 and he had previously had bleeding inside his lungs. They felt they had no choice but to move him to ICU and place him in an induced coma because his psychosis was preventing them from treating him at all. I asked about sectioning him and they said although that would allow them to hold him in the hospital it wouldn't allow them to treat him. However, there is a clause called Better Help that does allow them to treat a patient who is considered mentally incompetent. They asked me if I agreed to this and of course I said absolutely.

So for now things are very quiet. They will keep him in the induced coma until the immunosuppressents kick in and they can reduce the steroids. They said I can visit anytime but frankly he won't know I am there (an induced coma isn't the same as trauma coma, in an induced you are fast asleep) so I might just want to wait until they wake him up.

I am going to scrub the front door now, still can't sit still.