Don't know how many of you will remember me. Not been active on here since around 2014/15.
I have had good times and bad times since then. I found the right meds which helped massively and despite some blips I got on with life pretty well. Sorry for dissappearing when that happened
That all changed last February I was on hospital for my asthma, was hallucinating because I was on steroids and massively stressed. While inpatient I developed Functional Neurological Disorder (used to be called conversion disorder) and started having multiple dissociative seizures a day (also known as non epileptic seizures).
It's been really hard I'm physically disabled by it but because it has a psychological component some medics think the seizures are my fault, that I chose to have them when it's totally involuntary, that it's all in my head and I'm making it up for attention. To misquote HP 'It's all on my head but that doesn't stop it being real'.
I lucked out I have a good neuropsychologist and have therapy weekly. And it is helping a bit but I'm still massively limited on whatI can do. Plus alongside the seizires with the stress and the feeling trapped I have been Getting my old depressive symptoms bad but I haven't got any CMHT support. And over the last year my antipsychotics have been reduced due to raised prolactin but just been done through GP playing Chinese whispers with CMHT who have either never seen me or havent seen me since 2015.
The reason I turned back up here is I'm thinking about killing myself. I realised I have access to some meds that would be very easy to overdose on. And now I've realised that the suicdal thoughts I've been getting the last year have a really easy plan which I am a bit scared I may carry out on impulse. I don't think I want to die but I'm not sure I can handle.keeping on living anymore.
Thanks for the hugs guys.
Just writing this all down here helped me find the strength to tell my partner I had been thinking about suicide. I've never managed to tell someone close to me while I am actively feeling before, so yay go me?
He asked what he could do to help and I don't really have answer if I knew what he could do, I'd know what I could do? Going to try telling my psychologist tomorrow and try and work out a plan of what to do. Worrying about what that plan might be and what the consequences of that may be.
The only time I ever attempted was on impulse while in a dissociative state and I dissociate a lot these days so worried about acting without really choosing to.
I'm still so conflicted about whether I want to kill myself or not. So the chance I might not get to make the decision but might do something on impulse is scary. Right now death seems the only way to stop the suffering but if your dead your not around to enjoy the lack of suffering.
I don't know alternating between crying, suicidal thoughts and numbness.
I'm sorry to hear you're going through all of this. I don't know much about this diagnosis but I know seizures can sometimes be brought on by stress. It could be worth it to talk with your therapist about stress management if you haven't already. Another thing that might help is to look up and try some self care/relaxation activities.
Telling your psychologist about this is a great idea. It could also help to think about things you still want to live for. I know this can be hard but based on your statement about not being around to enjoy things it seems that you feel there are still good things to live for. Has there been things in the past that helped with the disassociation?
Forget the risk and take the fall if it's what you want it's worth it all
I am working with neuropsychologist on trying to reduce seizures by noticing I'm about to hit overwhelm and either calming myself down or working at how to express the emotion.
I'm using mindfulness meditation to try and de-stress, bit not consistently.
So sort of looking at stress management /relaxation.
I am trying to keep going to get better it just gets so exhausting having to try so hard to function, to constantly say no to the suicidal thoughts.
I managed to tell my psychologist and we brought my partner in and have made a plan to try and keep me safe.
As for whether there are things to live for there are good days but I am still limited even on a good day. I have made small improvements in the last year but my condition is variable and the bad days are just as bad as when it all started. I love my partner so keeping going for them.
Dissociation wise grounding can help but it's tricky to put it into practise when you are in that space without outside help
I've had a bit of a better day today. Tha is for commenting
I'm glad you were able to reach out and get some additional support to help you keep safe. It sounds like you are trying a lot of good things, and it's good that you have the right type of professional support too.
I wanted to just say that I have heard of FND, and while I don't have it, I know of others who do and that in combination with their other physical and mental health issues makes it quite disabling and very much real. I'm sorry you are dealing with awful people who don't believe what is going on for you.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Hey auror,
I am still trying really hard some days that doesnt seem enough. At least I have support who does listen from my neuropsychologist, my GP however sucks. I had a good GP but she left the practise last year.
Weirdly nice to know someone has heard of it and acknowledges it how disabling it can be. I am in a support group but outside that most people dont have a cliue.
Its been a tough week, my partner has covid and because I have severe asthma I am high risk for covid. They've been sleeping on the sofa and we have been isolating from each other. I havent got it yet thank goodness. But its a lot of extra stress and I am hitting capacity, just about keeping fed watered and from hurting myself (on purpose or by seizures). I don't cope well alone gives the voices space to scream. But I am still here. Todays been rough had some bad nightmares of memories mixed with other similar graphic bad stuff.
The meds I was thinking of using a few weeks ago are in same room as me because I might need them legitimately while partner is isolating. I am resisting
I am feeling like I may act on suicidal thoughts.
Or at least numb enough that I might.
I don't think I really want to die. But I don't really want to live. Life is to uncertain and it hurts. It really hurts.
I managed to tell my partner and get through last night's crisis point.
I was sort of dissociated I think and it made fighting the thoughts and seeing the reasons to live harder. I was so detached it seemed like a logical idea, especially as I was in a lot of physical pain at the same time. Kind of a perfect storm of terribleness. Which makes sense as only time I ever attempted I was dissociated.
But it's shows therapy is working that I actually managed to tell my partner. Before I could maybe tell them I felt bad / struggling but that was it. Couldn't share details, partly cos of trying to protect them, partly because it was hard to say out loud, partly because I was as afraid they'd stop as I was they wouldn't. And I couldn't even tell them things were bad until a couple of years ago (we've been together 9 years) and even then not reliably.
I am making progress even if the crushing lows still hit hard.
Wow, that does sound like you've made amazing progress, and very well done being able to tell your partner! I'm glad you are able to recognise the progress you have made, and that your physical health can be a trigger for mental health stuff. Are your medical humans for physical stuff aware of the impact it can have on your mental health? It might be worth mentioning to them if not.
Hoping the intensity has passed and you've been able to get some relief.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Progress is easier to see when I am feeling better and at a distance and hard on a bad and in the moment but seeing it all is a good sign.
Medical humans are sort of aware. Unfortunately GP seems to think FND is purely psychological although doesn't fully deny its impact which is something. My psychologist knows pain is a trigger. At least GP is willing to prescribe painkillers when I need them, although O avoid them unless I absolutely need them I don't like the dissociatey feeling strong painkillers give me.
Intensity has passed mentally and there is less pain which is very welcome. Had a bit of a better day today.
So glad some of the intensity has passed. Can your psychologist communicate with your GP to explain things and back you up? Is it worth trying to work with your partner and providers to try to come up with a plan to help you cope when the pain does get bad beyond just here are some painkillers good luck?
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Biggest win is I have changed GP and actually feel supported by new GP. He isn't forcing me to come off antipsychotics because of prolactin without proper discussion. We have a plan that if it stays above 1000 then he will refer back to CMHT and if necessary advocate for me.
I have finished my course of therapy wish I could have more but I made a lot of progress with it and it's at a point where I have to try on my own / NHS funding case is less. FND symptoms wise things have been better in general and emotions have been a bit easier to cope with. My neuropsychologist is looking in to gettong me some EDMR to help with hospital trauma and I have one review session left before I am fully discharged from therapy.
This last few days have been tough after managing my longest period ever seizure free I have been stuck in bed a lot of fatigue and pain and seizures.it has hit mentally but only been having self harm thoughts rather than suicidal ones which is progress.
Did Dissociate and try and get out of the house last night but partner redirected me back to bed until I came back. Then we set up a blanket tent to help me feel safe.
Can't sleep tonight just feel on edge/ not safe even though I am safe in bed in my flat with partner and Ducky
Pain has been driving me mad last few days.
Had to take the strong painkillers twice in one day yesterday which is rare. Haven't taken anything except over the counter stuff so far today but they aren't doing much.
Getting thoughts about hurting myself to distract from the pain or trying to find a way to knock myself out or something. Doubt I will act on them, I rarely do if I let logic in, but the fact they are there and tempting and loud is hard. And the fact sometimes Dissociative me does stuff without thinking it through is scary but also kind of gives me a well I didn't do it on purpose get of jail free card.
This is all very confusing. I just want the pain to stop so I can think clear.
We hope the pain lessens in intensity soon. It sounds like it's pretty awful to try to deal with. Is it worth trying to get in touch with any of your medical humans to see if they can suggest anything?
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Hey Jen, sorry it's taken a while to reply.
...
I'm afraid I don't have much wise advice but I wanted you to know I am thinking of you and hoping you get some peace for a bit soon
Hey Lio, thanks for replying. no worries on taking a while I get that people don't always have capacity to reply or don't know what to say. I also get that people are on less as site is quiet these days.
Thanks for the good thoughts I am hoping I can find out more about EDMR at end of January when I have final review with my neuropsychologist.
Quote:
Originally Posted by Auror.
We hope the pain lessens in intensity soon. It sounds like it's pretty awful to try to deal with. Is it worth trying to get in touch with any of your medical humans to see if they can suggest anything?
Thanks Auror.
Pain has been less excruciating today more of an all over body ache rather than high intensity cant think of anything pain like yesterday.
It would probably be a sensible idea to try and talk to my GP about the pain but it would have to be my named GP not someone else as it needs to be someone I trust and who understands FND and I am scared of being labelled a drug seeker or something. And named GP appointment could take weeks to get.
But I do think I need something better in place pain management wise so I don't just go crazy when in pain to the point I am considering hurting myself. Although yesterday I also wouldn't let myself take the strong painkillers as I wasn't really thinking rationally so I wasn't actually using the pain management strategy I have.
Can't speak to neuropsychologist before review at end of Jan and they are the one that understands FND best and could probably help best. I am on waiting list for neurophysio and I think that could be long term solution to coping with the muscle spasms and stiffness which ar wone of the main causes of pain.
I think psychologically I am struggling handling going from the best I had been in nearly 2 years over Christmas back to really struggling physically. And when I don't handle psychologically I end up physically worse and sort of spiral, stupid nervous system.
Sorry for long rambling reply. I am overanalyzing the possibility of asking for help with pain and what might happen a lot and so just kind of not doing anything to help me.
Last edited by long road : 10-01-2023 at 12:03 AM.
Reason: Clarity
I suck at persuading myself that contacting my medical humans is an entirely reasonable thing to do. I am doing that catastrophising thinking style where I think of everything that could possibly go wrong if I contact GP about pain such as:
1. not getting seen for weeks,
2. being denied anymore strong painkillers / called a drug seeker when currently when pains gets too bad they are the only relief (not that I can always persuade myself to take them)
3. not getting seen at all and just getting an unhelpful text message a month later.
I am trying to logic myself away from these beliefs with
1. It's only going to be longer for appointment with named GP if you dont try and book one.
2. This seems unlikely when you have been through a grand total of 1 pack of painkillers in 6 months. And a pack is a weeks supply if you take the maximum recommend dose.
3. Yes this happened with a patient triage request with old GP but new GP is much better and spent a whole fifteen minutes reassuring your jumpy anxious self that he would work with you and advocate for you around antipsychotics.
But it isn't really working, any ideas how to combat the catastrophising stuff? Part of me is telling myself to just snap out of it but I know that isn't how this sort of thing works.
Also side note for number 2 / myself I also want to look into alternative methods of pain management partly to combat the fact that I don't like the side effects of strong painkillers and that sometimes stops me taking them even if I need them. And maybe GP could politely chase OT and neurophysio for me.
That said just had the thought that maybe I could contact community neuronrehab and see if I can get some advice to deal with muscles spascisity stuff that is causing the pain while on waiting list for neurophysio. That is good idea. But still the problem of persuading myself that it is ok to ask and that it isn't just going to go wrong and then getting myself to do it.
Once I am in front of medical professional majority of time I can get the stuff out / explain what is going on (which is why no longer having weekly therapy makes asking for FND help harder) but if anyone has any advice on how to get myself there I would really appreciate it.
Last edited by long road : 12-01-2023 at 09:38 PM.
Reason: Spelling
Dunno if this is useful for you. But I guess the way I look at it is, it's an automatic no if I don't reach out and ask for their help. They can't do anything if you don't contact them. So worst case scenario if you do contact them, nothing in your situation changes. Best case scenario is they are nice and they can come up with solutions to help you get some relief.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Dunno if this is useful for you. But I guess the way I look at it is, it's an automatic no if I don't reach out and ask for their help. They can't do anything if you don't contact them. So worst case scenario if you do contact them, nothing in your situation changes. Best case scenario is they are nice and they can come up with solutions to help you get some relief.
Good thinking this does counter arguement against talking to neuro rehab and seeing if they have any advice / seeing how long referral might be/ possibly bumping self up list due to pain.
Have set goal for Monday to phone neuro rehab. And have told spouse to add accountability. Then based on what they say will address whether to call GP for appointment.
Also will attempt to order strong painkillers online from GP as your logic reminder logic states they can't give me more if I don't ask. And I only have 4 tablets left. And if I can't have without GP appointment then GP appointment has to get made.
Wish me luck for following through with this plan on Monday. And thank you for helping me breakthrough. Fear of losing painkillers my only severe pain management option is still there but it's there any time I try and order more anyway. And not asking doesn't get any.
