Pissed off and fed up.

[Vermilion]

Ostensibly, everything is great. Since DBT (about three years ago, I think) and some counselling for SA issues Iam, on the surface at least, doing very well. So lets start with the positives:

• I'm just completing my first module of my OU degree
• I've been in a great relationship for about a year and a half. It's going really well, and is a huge achievement for me as someone who could only manage FWB at best.
• I'm managing to go to karate classess. Again, a huge achievment from a social aspect. I could never have gone to a group of any sort prior to DBT)

 

Of course, theres's quite a lot that I'm struggling with too.

I've been referred back to the hospital because the VIN (pre cancerous cells on the vulva) may have come back. I was supposed to go for a review in September but my symptoms have been bad for a few months now so GP had it brought forward and it's next month instead. I'm scared shitless. There is the physical pain of the biopsy but also the emotional aspect. I've tried to explain it the doctor  but she doesn't seem to get it, I get that she looks/prods whatever at 1000's of vulvas but I bet she'd feel different if she was the patient. She never understands why I'm so anxious. Gee, I don't know doctor, maybe because your literally sticking a needle in my f**** and slicing it with a tool? Or because I'm naked from the waist down with everything exposed with a hospital gown that also exposes every scar that I have? Or perhaps because of the history of SA that I've repeatedly explained? It's like talking to a brick wall. So, just deal with it I guess.
There's another aspect to this too. The fact is that this affects my sex life too. I've worked b***** hard to get a 'normal' sex life back and it's like it's being taken away again. People always ask, "Is [my bloke] ok with that?". Yes, he is but I'm not and it's my sex life too. 

That's probably the main thing but I've been feeling a sort of mental decline over the past few months. I haven't had any contact with CMHT for months. They can't sort out a prescription never mind any actual help. I find myself resorting to mild forms of self harm but not to the extent that I used to; it mostly results red marks or bruises that last a few days rather than to the extent that requires A&E or b**n units. I just worry about things escalating and feel powerless to stop it. CMHT can't organise a p** up in the pub so they aren't an option. They may attempt to help if I put myself in hospital again, but I don't want to get that severe again.

I'm sick of being autistic too. It's making driving difficult and will likely cost me 1000's because of the difficulties I have that will take a long time to work around. The daily masking is exhausting and just makes me stay at home most of the time; at home I can wrap myeslf in blankets, clap my hands, hide under the bed, rock back and forth etc whereas in public I'm just seen as 'weird'. No one believes that I have autism because I don't look autistic and I also have a boyfriend. Oh, and I'm not Sheldon Cooper or Rainman so clearly can't be autistic...  So, I don't bother telling anyone these days unless its absolutely necessary, like my driving intructor for example.

I'm also frustrated at the lack of support to help get me into work. I've tried many organistations that just signpost me to other organisations. Even the one's who claim to support 'neurodivergent' people are either unhelpful or chronically underfunded. I'm genuinely frightened about the upcoming changes to benefits; I have no choice but to rely on them atm and if I take just any job I'll end up back where i was a few years ago. Don't get wron, I want to go back to work but how about some f*****g support instead of shoving me in to a job that I can't do? Locally, there are no jobs and I'm struggling to drive, and the bus/train service is unreliable and overwhelming for me anyway. It reinforces the beliefs that I've been feeling for a long time; that I'm a burden. Society doesn't want nor care about disabled people, especially when it comes to so-called invisible disabilities like autism or mental health. I frequently think that I should just end things and then I'll no longer be a burden. It's awful to know that society views us this way.

Sorry for the essay, but I have a habit of bottling things up and then letting it all out at once.

[Vermilion]

So, I've managed about half of a driving lesson this morning before I got too overwhelmed and started to cry. Why I get so overwhelmed I don't know. It's frustrating when you need/want to do something and get irrationally upset, and it's b***** expensive too. I've paid upfront for about a month worth of intensive lessons purely to try and get over the anxiety which cost me £660. Then I'll need more lessons to actually drive properly. If I can't drive then I'm buggered since there aren't any jobs here and I can't afford the rent in the city and public transport is crap. Well, I talked about that in my last post so I won't bother repeating myself too much.

I've looked in to private counselling but I really can't afford it right now, everything is just so expensive. Uni only offers support related to studying, which isn't something I'm struggling with that much. I really don't know what to do. Not just regarding driving but my mental health in general. I know it's on the decline, and I'm trying so hard, but I really do need professional help.

[purplebutterfly]

Hearing you.
Can’t offer more, but hope an ear helps a bit.

[Vermilion]

Thanks PB 

I feel exhausted, I'm just lying here doing nothing, and hating myself for it.

I've messaged old CC out of sheer desperation but she hasn't contacted me yet. It might not even be the right number so I might not hear anything at all.

I'm in two minds about karate class tonight, maybe it'll help but I might feel even worse. No one is forcing me to go nor stay so I can leave anytime I guess. There's only one session this week because the place where we train is being used as a polling station on Thursday, so it would be a shame to miss it.

I have another driving lesson tomorrow; I'm trying to go rather than cancel, what DBT calls 'opposite action'.   

[Rob]

I think when you’re really anxious about something, like driving, it’s going to be something that reduces the more times you do it- that’s why you’ve paid all of this cash up front: to reach the point where you’re not as anxious and become confident instead. So keep doing exactly what you’re doing and eventually you’ll get through all of the lesson without feeling any more anxious than any other learner driver feels.

[Vermilion]

That's essentially what my instructor said and why we agreed to do some 'intensive' lessons. I've actually been having lessons for a few months, since December, and the whole idea of 'intensive' lessons was to help overcome the anxiety. I've easily spent £1000 so far so I really, really hope it works. 
Part of the problem is that my usual 'stimming' things have to be suppressed when I'm driving (I can't just start clapping or rocking while driving, for instance). I could probably benefit from speaking to occupational health, someone there would probably know something that could help. I don't think medication would be an option though, the side effects would likely render me unable to drive..

Old CC didn't get back to me so I'll have to find another way to get help. I'm not taking it personally but I'm not sure how to get the help. I don't know if I'll be able to phone GP nor CMHT because I don't know what to say. I'll have to figure something out though. 

[Vermilion]

Managed about half a lesson again, I didn't actually cry this time but I was shaking badly/breathing too fast etc. Another one booked for Friday... yup.. 

Old CC messaged me back today, it's been less than three years so I can self refer back to CMHT rather than having to go via GP. So, I'd have to phone CMHT to get help. Why is it always on the b***** phone! I'm not sure that I need much help anyway but I'm also aware that things aren't quite right either. Ah, my brain loves to tie itself into knots!

I'm so drained that I've slept most of the day, yet I still feel knackered. 

[Patient Pianist]

Hi,

Just wanted to say hi and that i'm thinking of you.  i'm sorry things are so hard, but also i wanted to say well done for keeping going, esp with the driving.  You're determination will pay off.
i completely agree with you about everything being on the phone. Is there an admin email or something that you could use to initiate contact? Would it be any easier if they phoned you?

Take care.

[Vermilion]

Writing is a good idea, I'm not sure if they'd let me though. I'm not sure that this is really a job for CMHT anyway, this is probably just life being stressful rather than actual mental illness. 

I had the hospital appointment yesterday (Saturday) and it was... Well... I can't think of a word. Maybe if I describe it... 



I went into the changing room to put the gown on. The changing rooms are just opposite the treatment room.

I'm already terrified, struggling to hold back tears. I start getting changed...

I can hear the patient before me crying out, probably having the same thing as me. It tips me over, I started to cry because I knew that I was going to be crying out in agony too.

The nurse called me in, by now I was shaking so much I could barely stand up. All while trying to keep covered up with a backless hospital gown on, with no pants on.

I sit in a normal chair while the doctor explains what's going to happen. I dutifully get in that chair with the foot rests that slide over and expose everything.

The nurse gives me some gas and air (the same stuff used for women in labour) which helps with the anxiety somewhat.

The doctor then starts prodding around, as doctors do. She then dabs that horrible stinging solution on my vulva. Similar PH to vinegar, apparently.

It stings and burns, the gas and air not doing much for the pain. Due to the Lichen sclerosus my skin is fag paper thin so it bleeds a bit, as it usually does.

That solution has revealed some skin changes so the doctor tells me that I need a biopsy again.

I start to panic again, trying to get out of the chair. I'm hyperventilating while a bit dizzy and confused from the gas and air. The nurse has to hold me still while they lower the chair, which was the right thing to do since the chair is raised up very high and I probably would have hurt myself if I fell off. 

They let me get dressed again, so I get dressed and come back in to speak to the doctor before I leave. She's decided that I'm too anxious to have a biopsy while conscious again (you don't say!). So, we agree that I'll have it done under general anaesthetic. She wants to look 'inside and out' and she'll do everything that's needed while I'm knocked out.

Nothing to do now but wait. I'm still very sore and probably will be for a few days. I'm having these... I don't know... intrusive memories I guess? I'm remembering yesterday, remembering past biopsies and the agony that they are. I have bouts of intense anxiety and start shaking again.

In a way, I know that self harm would lessen the intensity of this, make it manageable at least. But I don't want to self harm  . 

[Vermilion]

So, here I am seemingly unable to do much of anything. I should've gone on that course (separate from uni) but, despite waking up with plenty of time to spare, I didn't get to. I just sat there seemingly unable to move. I've been doing this for a few weeks, to the point where people are actually noticing. I keep saying that it's a cold, which is somewhat true since I had one last week, but it's not really a huge part of what's going on. I just feel like I'm shutting down, like I just can't do anything anymore.

I'm still doing the driving lessons but my progress is frustratingly slow, it could take 2 years+ quite easily. Though I'll run out of money by then anyway. I might just finish the lessons that I've paid for and just quit them afterwards.  I hate it because I know that my chances of getting back to work are basically zero if I can't drive  Oh, I can get really good marks in uni modules but can't b***** drive! I hate my brain. 

I went for the pre-assessment appointment at the local hospital yesterday and I've been given the go ahead to have a general anaesthetic.    If I wasn't such a pussy (bah dum pssh) I could've had this done weeks ago. Oh well.
 
Somewhat related is that I've had severe symptoms again, whether it was thrush or the Lichen sclerosus is unknown, even the doctors can't figure it out when this happens. I didn't bother with GP, ringing 200+ times and then explaining to the receptionist before i even get to a GP just requires energy that I don't have. I just did both treatments and hoped that something would work; 3 tablets for the thrush and steroid ointment twice a day. The symptoms seem to have eased, lats weekend my skin was bleeding and sex was impossible, (hopefully make up for that this week end.. 😏) I'm going to have this condition for the rest of my life so I've just got to get used to it. I just wish that there was some sort of long term management for it, a clinic or something but there isn't. GPs do their best but this requires someone more specialised.