I am so confused

[sillykitten]

Hello everyone hope you are doing well 

I understand that the worrying part of the brain is overstimulated so the alarm rings easily when a threat is detected & the take action part of the brain is also overstimulated . I understand that the alarm also doesn't shut off when it should. In these moments I am so confused how to know if there is any real danger or not.

At the end of the day I am unvaccinated & vulnerable to covid & need to protect myself. But because of OCD I don't know what I should do & what is pointless.

I want to be confident when the alarm goes off to be able to say that it is just OCD but the lines are too blurred.

I am exhausted, I want to start doing only what I need to do & no more but I can't tell what that is exactly.

Any advice is very appreciated   

[Ashley]

3 hours ago, sillykitten said:

understand that the worrying part of the brain is overstimulated so the alarm rings easily when a threat is detected & the take action part of the brain is also overstimulated . I understand that the alarm also doesn't shut off when it should. In these moments I am so confused how to know if there is any real danger or not.

Hi Sillykitten,

I tend not to pay too much attention to which parts of the brain are doing what, partly because I don’t know if it helps me deal with my OCD too much in the real world.  

Ultimately it’s not the thoughts that are the problem, it’s our heightened sense of fear fuelled by misinterpretation of such thoughts. 

As a general rule, we tend to work with the golden rule of OCD that if we are unsure if something might be OCD or not, is to assume it’s OCD. 

At the start of the pandemic I was overestimating fears a lot, eventually observing others was helpful as I adapted their approach. I think one of my team also struggled with this due to covid vulnerability, if helpful I can see if she can reply with helpful advice?  She is off for a few days so it may be late next week. 

[sillykitten]

27 minutes ago, Ashley said:

At the start of the pandemic I was overestimating fears a lot, eventually observing others was helpful as I adapted their approach. I think one of my team also struggled with this due to covid vulnerability, if helpful I can see if she can reply with helpful advice?  She is off for a few days so it may be late next week.

Hello Ashley

Thank you very much for your advice & yes please that would be very helpful.

I look forward to your team members reply 

Edited June 3, 2023 by sillykitten

[Handy]

Our amygdala goes into hyper vigilant mode. It'll turn off if you ignore it long enough.

That's why I see triage as the first step in CBT. Triage is deciding if something is posing a risk or not. 

[Annie x]

I am finding that learning all I can about ocd and that my brain is not neurotypical and what that means is helpful at the moment. I've read a good book that explains what the amygdala is doing when an obsession pops up. Knowledge is power for me, and I also felt less alone and like it was 'only me' when I saw how much literature there is on it, and what a range of topics are present on this forum too. OCD as we all know can be terrifying and paralysing and exhausting but it's definitely helped me to accept that I have this condition and there are things I can do to manage it. I used to think it was a problem that had to be fixed, but what if it's just about living with it in a manageable form? I think for me that's a better short term target. I would recommend reading if you're interested in how the brain works. Said that in a rather long winded way! x

[Ashley]

7 minutes ago, Annie x said:

that my brain is not neurotypical and what that means is helpful at the moment.

I don’t believe that OCD falls into the category of being neurodivergent. Our brains, sometimes with therapy, can change how we think about a situation to no longer be fearful or obsess. 

[Ashley]

12 minutes ago, Annie x said:

I used to think it was a problem that had to be fixed, but what if it's just about living with it in a manageable form?

But what if such an approach will lead to someone always having OCD. I believe, for me, not accepting this thought all those years ago pushed me to keep fighting, and get to the point I am now. Still some work to do, but there’s a lot (75%) of OCD problems I can look back on as history. 

[Annie x]

Taken as snippets like this I'm not sure they mean what I intended, so I'll try to clarify. I am happy to accept being 'not neurotypical' in the sense I have a mental health disorder only certain people suffer from. It's a term I'm comfortable using but aware it won't fit for everyone here.
Depending on the source you read, the percentage of ocd sufferers who recover completely seems to differ and since everyone's degree of ocd will also differ I guess we all have a different journey with the disorder. I'm so glad to hear your ocd is almost completely under control and I'm hoping to get closer to that myself - it's a hopeful story to hear.
I've spent decades hiding ocd because I felt it wouldn't be well received by those around me. I'm so tired because in going on so long it now manifests in a myriad of different ways - and one way of coping for me is to start accepting I have this condition. It seems to help me to be more self compassionate on the days when battling ocd feels really tough.
Hope this makes sense.

Thanks

[snowbear]

23 hours ago, Annie x said:

I am happy to accept being 'not neurotypical' in the sense I have a mental health disorder only certain people suffer from.

Like Ashley, I have to question this.

Not being neurotypical (aka neurodivergent) is a term I believe is best reserved for when there is some permanent difference in how your brain is structured and how it functions. This difference is present before birth and although it can be compensated for it cannot be reversed. It covers conditions like autism, ADHD, dyslexia, dyspraxia, synaesthesia and so on.

Neurologically, OCD is not a permanent disorder.   It can be lifelong or it can go on so long that anatomical changes occur in the brain BUT these changes in brain anatomy and connectivity are reversible.

You will come across some websites that still list OCD as neurodivergent.   Maybe they aren't up on the latest research, or maybe they stand to gain something from keeping OCD on the list. Who knows? Still, it's a well-known fact you shouldn't believe everything you read on the internet! So take stuff like 'the amygdyla is enlarged in OCD' with a bucketful of salt.  Yes it is enlarged while you continue to suffer from OCD but it reverts to normal size after you treat the OCD.

Of course, you can have a neurodivergent condition alongside your OCD. That may mean it's necessary to adapt the CBT, but the OCD aspect is still treatable.

 

23 hours ago, Annie x said:

I've spent decades hiding ocd because I felt it wouldn't be well received by those around me. I'm so tired because in going on so long it now manifests in a myriad of different ways - and one way of coping for me is to start accepting I have this condition. It seems to help me to be more self compassionate on the days when battling ocd feels really tough.

 

Many of us were the same, hiding OCD because it was (and by some still is) poorly understood. Accepting you have OCD is great.   I agree, it definitely helps us to be more self-compassionate knowing what the problem is.

If you want to call yourself neuroatypical/ neurodivergent then go ahead. It's only a word. However I don't think it's helpful to think that because you've had OCD for most of your life that any neuroplastic changes it has caused are part of you.

How does that kind of thinking motivate you when it comes to putting in the hard work it takes to break free of OCD?

A very important part of recovery - especially in those who've had OCD for a long time - is learning to separate 'you' from the OCD. Building a new identity; decide what you want your life without OCD to look like and find things to fill the empty time you once wasted on OCD.

 

 

23 hours ago, Annie x said:

Taken as snippets like this I'm not sure they mean what I intended

 

I get this all the time with stuff I say on here. So if I have miscontrued what you meant then sorry in advance and no worries. Just take what you find useful from anything I say and ignore these rest.

 

[Annie x]

Hi @snowbear Thanks for your detailed reply. Would you be able to share some resources you've read on this? I always feel knowledge is power and am keen to find out what I can. I actually haven't read any instances of the amygdala increasing in size, but rather that it is overactive and that with ocd we have a sticky mind that becomes more sticky with stress. This has led me to think ocd is longterm like other disorders are. I also have read ocd is believed to have a genetic component. Again though would love some good reading material if you can provide it.

Thanks 

[snowbear]

I've got so many research papers and webpages bookmarked (literally near a thousand!) that it will take me ages to troll through them. If I get time later this week I'll come back to this and give it a go, but I'm sorry I'm too busy to look out references just now.

Sounds like you read a lot yourself though, so as long as it isn't compulsive googling (!) then google is your friend.

[bluegas]

Hi Annie I strongly believe in what your saying and one day I hope soon there will be a massive breakthrough in ocd treatments ! At the moment it’s all very basic we need better medication for a start ! Not trying to upset the others but I’m all for people shining different lights 

[Annie x]

@bluegas

Thanks for your reply. I hope things are going okay for you. I definitely want to approach this from a place of understanding and like I said, knowledge is power, so great to hear other viewpoints. I'm glad what I said resonated with you. I hope @sillykitten this conversation hasn't monopolised your discussion thread! @snowbear and @Ashley if you can spare any time to point me towards things you have read at some point, I would be grateful. I've been watching back some of the conference material from the ocduk website which has been really helpful too. 

Thanks

[sillykitten]

Hey @Annie x haha it's absolutely fine  Feel free to talk about anything you want. I find the discussion interesting and helpful so thanks to everyone 

[snowbear]

On 03/06/2023 at 17:37, sillykitten said:

At the end of the day I am unvaccinated & vulnerable to covid & need to protect myself. But because of OCD I don't know what I should do & what is pointless.

 

Hi Sillykitten,

Your thread has got somewhat hijacked by all of us voicing our opinions on various stuff. I thought it would give everybody some cooling off space if we got the discussion back on track and replied to your original post.

I'm unvaccinated too and have a chronic inflammatory condition which puts me at slightly higher risk of getting the more severe form of Covid where your immune system goes into overdrive and starts attacking your body and giving you blood clots.

So obviously I'm very keen not to catch covid! 

But getting ill with covid isn't one of my ocd themes. Health anxiety in general isn't one of my ocd themes.

So I take minimal precautions. Never really give it a second thought these days!

What I consider normal is (wherever possible) to stand around 4-6 feet from someone new whom I'm talking to. If I know they've been socialising in big crowds or in recent contact with someone who has covid I might ask them to wear a mask while visiting me, but if they hadn't got a mask I'd not worry about it -  just aim to keep 6 feet away and otherwise carry on as normal.

I don't clean or disinfect shopping or post, or take any precautions at all around physical things.

I don't test myself, even if I develop mild cold symptoms or a cough.  I reckon if I catch covid I'll know it from how awful I feel so unless I feel really awful I see no point in testing myself for minor or short-lived symptoms, even if they are symptoms known to be associated with covid.

In short, I'm aware of the risk, but not overly concerned. I'm simply getting on with my life now as if the pandemic never happened, same as most vaccinated people are doing. I am aware that I rely on 'herd immunity'. I can only get on with life without extra precautions because most people are vaccinated and that keeps the amount of virus in circulation low. So way to go and a big thank you to all the vacinated people!

My friend is in her late 70s and her OCD is tied up with ageing and fears about dying. So she's much more concerned about catching covid than I am. She's fully vaccinated and has every booster she's offered, but takes many more precautions than I do. She mixes with friends and family fairly freely, but gets a teeny bit paranoid ( my viewpoint) when asked to socialise in a crowded place. She still uses hand sanitiser when going shopping and tests herself for covid at the slightest hint of a cough.  ( again it's my viewpoint that this is her OCD causing slight paranoia rather than necessary.)

What's 'normal' in a post-pandemic world? It's very hard to say. But my thoughts on the matter are:-

1. if you're thinking about it a lot

2. you feel anxious when you do think about it

3. you're spending more time on 'necessary' precautions than your friends and family

4. you're avoiding social events solely to avoid catching covid

5. you're self-testing without enough symptoms that pre-covid would have made you book a doctor's appointment

then chances are it's OCD fears driving your behaviour.

Hope that helps give you some perspective.  

[LauraOCDUK]

On 03/06/2023 at 17:37, sillykitten said:

Hello everyone hope you are doing well 

I understand that the worrying part of the brain is overstimulated so the alarm rings easily when a threat is detected & the take action part of the brain is also overstimulated . I understand that the alarm also doesn't shut off when it should. In these moments I am so confused how to know if there is any real danger or not.

At the end of the day I am unvaccinated & vulnerable to covid & need to protect myself. But because of OCD I don't know what I should do & what is pointless.

I want to be confident when the alarm goes off to be able to say that it is just OCD but the lines are too blurred.

I am exhausted, I want to start doing only what I need to do & no more but I can't tell what that is exactly.

Any advice is very appreciated   

sillykitten I empathise - Covid has been a HUGE theme of my OCD and I had a big relapse after being in recovery for a few years. My wife is extremely clinically vulnerable so was advised to shield when Covid first hit and we followed all the guidance this entailed, not seeing loved ones for over a year, wearing masks, social distancing, only socialising outside etc.  OCD latched onto Covid for me really hard because I'd struggled with contamination themes previously (I really struggled when there were fears about Ebola spread for example) - Covid felt like validation of my worst nightmares and I was horrified that other people weren't taking it as seriously. I also felt hugely responsible for protecting my wife because she is extremely clinically vulnerable and so the combination of these factors meant that we were not leaving the house at all except for medical appointments and walking the dog at quiet times of day. I ended up 'quarantining' all incoming post and groceries for five days and then sanitising them before I would handle them with gloves (even our Christmas presents in 2020, which we opened with gloves on and then put them back into quarantine). When we did start to socialise with people outside, I made sure we sat excessively far apart - literally shouting across the garden - and would antibac after handling anything they'd touched. At first, those measures felt reasonable - there was an objectively higher risk to my wife than other people and I knew from a family member who worked on a Covid ward how grave the consequences could be if she caught it. We got vaccinated, and watched as other people around us started to relax towards the 'new normal' everyone kept talking about, but I felt the risk of returning to any other activities was just too high to contemplate. It really affected both our mental health as we were barely leaving the house and everything felt so ruled by Covid. Eventually I realised that OCD was making it very difficult to figure out what was excessive and I had more CBT to help me to start taking steps forward but it was still a struggle, especially with the vague messaging for extremely clinically vulnerable people the government began to offer once shielding ended (too much uncertainty for OCD's liking!) 

Ironically, it was actually getting Covid that helped me to take the biggest steps forward (not recommending this obviously!). My wife caught it from a colleague once she was required to return to the workplace, despite her still wearing a mask all the time (at my insistence), and I caught it from her. It was rough, she was very unwell for a short time with it, but is now ok (who knows if it was the vaccines, antiviral medication, a milder strain or if it always would have been the case) and so am I. After that, we abandoned most of the precautions I'd insisted we take - both because we'd caught it despite taking them and because we decided that it wasn't worth having poor quality of life any longer - we have returned to seeing loved ones, going out (moving up gradually to bigger events) and doing everything we did before - I only wear a mask at medical appointments, on public transport and in shops because it isn't inconvenient to me, but I reason there's no point wearing one somewhere like a concert and it is impossible at a restaurant, and on the occasions I've forgotten one I've been anxious but gone without one (and it is clearly OCD logic telling me I need to wear one on the bus when I've gone to a concert and football match without one!) I would only test now if either of us had obvious symptoms because my wife has been advised to get the antivirals as soon as possible if she tests positive. I reason that there might be genuine risk in some of the activities we are doing, but for me the trade off was between trying to do everything I could to stay 'safe' but being trapped inside the house forever, or taking the 'risks' and getting to have good quality of life.

I hope that helps a bit!

[sillykitten]

Hello @snowbear & @LauraOCDUK 

Thank you both very much for sharing with me your experiences & thoughts, you have both given me a lot to think about.

I haven't left my home or seen my parents since early 2020 & I live a crazy life inside this flat so terrified to touch anything & it's got so out of control.

When covid started I didn't know I had OCD & believed I was simply protecting myself & by the time I did find out the damage was done & now it feels impossible to reverse. I'm so far removed from reality its ridiculous! I'm terrified of catching covid & dying but also of OCD itself. It convinces me so easily I'm in danger I don't know why I'm listening to it when I know it's an illness 

Anyways thank you both for giving me some prespective & help with moving forward I appreciate it so much