Coping when it all comes crashing down

[Guest tabbycat]

Hi

I'm new to the forum. Slowly developed OCD traits over the years alongside other anxieties, have had ME for a couple of years and this really brought on what I think is called contamination OCD. I have had little bits of CBT but pottered on carefully as the psychologist didn't think i had the energy to work on it (virtually housebound). I've been mostly staying with my parents as its much easier and more relaxing there and the OCD stays in its box more when I can see others going about 'normal' life.

So, 13 days ago I had to come back to my own flat for 2 really tiring stressful appointments last week, didn't want to be here and due to mum breaking her arm and my parents going away soon I knew I'd be alone looking after myself for over a month, which I really didn't want.

First afternoon I put something possibly dirty on the clean sheet on my bed, fine about it for a couple of hours then started to worry. Told myself to live with it and made the rest of the bed and slept in it. Essentially for the rest of that week wavered between it being fine (or too tired/stressed by everything else going on) and rising panic at the fact that by contaminating my bed I'd contaminated my whole flat through transfer from pyjamas/body to seat, table etc etc etc, and fear of everything else - toilet, touching food, bad. It was just about under control though.

Last weekend it all fell apart as I started doing washing and cleaning, which I barely have the energy for, and of course once you give into it you've agreed everything was dirty and all mental hell breaks loose. Near panic attacks at everything (never been that bad before) sobbing that I was going mad, terrified by Monday morning.

I managed to see my doctor yesterday, she's trying to get me some quick mental health help as I'm struggling to eat, can't sleep, really messed up. Trying to keep it together. The doctor doesn't really want to start me on antidepressants because they could make things worse first, which I've little capacity for, but the mental health services will not take an urgent referral (which part of me is desperate for as I'm so scared, but part of me agrees I'm not suicidal or anything, just panicking and terrified, mainly, after being slightly calmer for a couple of days, of getting back to the point of unbearable panic I was in on Monday). Doctor's ringing me back tomorrow now we know the referral will be a few weeks, to readdress the medication issue. I have an appt with the psychologist I've been seeing privately, but at the moment a week tomorrow (the earliest he could see me) seems a lifetime away.

I'm sorry this is so long but thought it was either all or nothing. Exhausted, sore hands, scared, alone (although I have very good friends who keep contact on Facebook and have visited every other day - a couple know what's going on, others just probably think I'm struggling with the normal ill lovely unhappiness). Any thoughts, advice, support, anything greatly appreciated. Trying to walk the knife edge between not giving into every little need to be clean, but also not set off the waves of hot cold can't breath chest hurts panic.

It's been a hell of a couple of weeks

Cat

[Guest tabbycat]

Ok, I clearly either said too much or something wrong or... Something. Sorry.

[Guest lizinlondon]

Hi

I have contamination OCD like you. It is not a germ thing but more of a mental contamination, however it works the same way because my compulsion is to decontaminate by cleaning certain things other people have contaminated.

I know how you feel. It is awful if you think you have spread contamination and mentally review everything that you have spread it to.

I got really ill with it this year and gave up compulsions and started avoiding touching things instead. So I got quite disabled by it. In July I decided to finally get help and went to my GP. I now have a psychiatrist and psychologist who I see privately.

I know waiting a week to see a psychologist is hard, mine is on holiday this week! But do all you can to cheer yourself up and relax while you wait. Do some breathing or mindfullness, watch a film or read a book if you can.

Things will fall into place and when you are getting the right help you will feel more secure. I find using these forums helps too.

[Guest tabbycat]

Thank you. Yep, I'm touching the minimum too, and so scared of setting it off, but my ME has really flared up this morning which makes it harder to remember to wash my hands properly after touching the wrong things and lulls me into a false sense of non-panic security until I have the energy to worry about everything I've touched later.

Found out this morning that my doctor has been back onto the mental health referral centre and they will now take the urgent referral for seeing a psychiatrist within 5 working days. Which is nearly when I was seeing the psychologist, but should give me much better support, chemicals etc. The more I read about contamination OCD the more I realise how restricted and careful I had become, thinking I was coping. This was a ticking time bomb really.

I'm sorry to hear you're suffering too, but feel a bit less alone now.

Thanks

Cat

[Guest MrsF]

Hi Tabbycat and welcome. I'm sorry you are having such a tough time at the moment. I've recovered from contam OCD but mine was slightly different I was too scared of chemicals and germs to clean anything but I was able to beat it with CBT. Have you found the bits of CBT you have done helpful? The forum is very helpful and theres always lots of support. x

[Guest tabbycat]

Thanks. I sort of found the CBT helpful, but equally things are so bad now because i challenged myself in a situatio where if I hadn't it would have been OK (if that makes sense?). The best thing he did was sit with his hand on the sole of his shoe, which drove me mad at the time but gives me some sort of OK/not OK comparison now.

Did you find that you actually made things worse by trying to not get things dirty - by trying to be some careful your more likely to go wrong as your not doing things in a relaxed and normal way? It doesn't help that my flat isn't actually very clean - the toilet sort of is (rationally speaking anyway), crockery etc gets dishwashered and surfaces get antibac wipes, but I can't thoroughly clean as I haven't the energy, and tend to get half way through the job and end up exhausted which makes things worse. I was thinking of getting a cleaner, but I need to feel safer about that first due to the risk of making it all so much worse if they're not careful enough.

What hurts the most is that I grew up on a farm (in a 'normally clean' house, but played outside all of the time, have probably ingested more dirt etc, squelched bare feet in mud just to see what it felt like etc than most if the population), and was keen on camping and climbing, cub scout leader before I got ME. A sensible approach to dirt was part of my life - showering daily but not minding the near permanent oil stain on my calf from cycling to work every day that never came off. I wonder if, even if the ME ever allows me, I could ever live like that again.

[Guest tabbycat]

I often avoid cleaning something because I still won't trust that is clean, just worry that I've 'stirred up' the germs.

I've a PhD in analytical chemistry - having worked with invisible quantities of things that show up so clearly under analysis has been a contributing factor too I think!

[PolarBear]

What is ME?

[Guest tabbycat]

Is also known as Chronic Fatigue Syndrome. Mine was a post viral thing, that initially got very slowly better, then I went back to work too soon and made it a million times worse. A mental illness that requires you to clean/wash clothing lots, and focus on what's dirty/washing properly, combined with a physical illness that means you have v little physical and mental energy and a foggy brain (and aren't able to do much to distract yourself - I can't read a book for example as after few minutes I can't focus, push it and I get a migraine), along with other things, is a bit... unfortunate... really, although I've heard that having both together isn't unusual http://www.actionforme.org.uk/get-informed/about-me/Symptoms/range-of-symptoms

[PolarBear]

Thanks.

[Guest PaulM]

I often avoid cleaning something because I still won't trust that is clean, just worry that I've 'stirred up' the germs.

I've a PhD in analytical chemistry - having worked with invisible quantities of things that show up so clearly under analysis has been a contributing factor too I think!

Hi tabbycat,

Welcome to the forums. I have similar concerns. No PhD but I get that sometimes the more we learn the more we analyze. I took computer engineering in school. Yes, analysis is sometimes not my friend. Sometimes I think of things at an atomic or molecular level. I had to in school learning about why electrons and protons do what they do. That level of thinking when it comes to choosing components and designing circuits - fantastic. That level of thinking when it comes to contamination - yeah sometimes I wish I didn't think that way.

I remember my first psychiatrist telling me about a fact he'd learned from reading Asimov that there is gold in seawater. I looked it up and yeah, sure enough there is! But even as valuable as gold is it's still not financially viable to extract it. It exists but it doesn't matter at that quantity. I try to think of that at times as a reference when my mind starts to go down that analyzing path.

Lately I've tried to shift away from what the concern is and toward why I'm thinking the way I am. Cognitive distortions like all or nothing thinking. My therapists say my hands, in spite of my efforts, will not be 100% clean, nor are they 100% dirty before I wash. That's reality. My thoughts that it's either the binary states of clean or not clean is not reality. Everything is kind of in that indeterminate zone - perhaps leaning one way or the other - but not 100%.

It's a real struggle to live with that. But the part I try to focus on is my thoughts about it are not reality. The fear is - definitely. But the fear is a feeling caused by the thoughts.

Riding out that fear is difficult at times. I watch a lot of films. I'm too stressed to read at the best of times. Monday night I went skateboarding (some habits die hard) and focusing on where my feet are on the board before I end up needing an ambulance was such a relief from the other thoughts. It was like taking a holiday.

[Guest tabbycat]

Thanks Paul! Your thoughts about this are very similar to mine. Logical Cat agrees with the shades of clean/dirty, and accepts it as fine. Irrational Cat wants to spend all day in the shower and is desperate to feel so clean. They switch places over and over all day at the moment! What you've said does help though, thank you.

I'm so glad I'm getting help next week, as at the moment I have to give in to the urge to clean to avoid the terror of earlier in the week, and the sooner I can get some perspective on it all the better. Still having daily anxiety attacks, but milder, and I can sit and rest a bit too - meant to be 4 times a day but it's hard to let my brain idle. I tried so hard to find relaxation tracks last weekend - one began 'imagine yourself lying on a beach' you can probably envisage the panic that set off :-)

I can see exactly where you're coming from with skateboarding. I rock climbed before I got ME. It was all that got me through my PhD thesis writing (I ended up self harming one day - mental health never been great, I crack under pressure). The concentration, the endorphins, the fun of being out with friends. I miss it painfully. I hope you manage to skateboard often.

[Guest PaulM]

I'm glad it helped a bit.

I love it when people tell me, "You can't think like that. You'll drive yourself mad." Well, I already do think like that. So what next?

The skateboarding helps. I was injured last year (jellyfish stings on both feet/ankles) and only made it out one day before that happened. Monday was my first day back at it.

Rock climbing is a great distraction. Even if you just do some bouldering and focus on some problems there. Do you have a climbing gym near or do you actually have the opportunity to get outside?

[Guest tabbycat]

When was supposedly mentally doing OK a friend told me I had more habits than the average convent, and my Mum made a similar comment about driving myself mad, again when I was seeming to the rest of the world to be doing OK. I fear I've succeeded at driving myself mad just now though.

I can walk for 5 minutes a day at the moment, too weak for anything more. Climbing is a 'hopefully one day in a few years' goal. Loss of my main life coping strategies - rock/plastic rock or cycling so hard I felt a bit sick - has been a big contributor to this. I also play the cello, again stuck in its case due to the physical and mental effort it would take to give it any exercise. Strangely I'm not depressed as such, despite at least temporarily having my life restricted so much, but I guess the OCD is my mind's way of showing that it's not coping. I'm working with an occupational therapist to slowly increase my physical and mental activity, but was told last week that in the opinion of the occupation health doctor i saw I'll never work fulltime again (I was 31 last week). I make things at the moment. Origami, jigsaws, cardboard models, Meccano, that's my way of coping with the ME. Been to anxious and tired to focus on them for days though. Can't get back into my comforting routine of make things/rest/use the computer a bit /rest/watch telly a bit/rest - you get the idea! Need to try and get it back.

[Guest PaulM]

I understand.

More habits than the average convent. I'm going to have to remember that one.

Making things is great too! It sounds like you're quite gifted. Everything I try in origami looks like rubbish. I play guitar and take singing lessons but to be honest the guitar is rare event these days. Singing is fun. One thing I noticed was when I would practice diaphragmatic breathing I would get calmer for some reason. Sure enough it helps.

I started a course in mindfulness based stress reduction in the winter but couldn't finish it (contamination reasons). But what I did learn helped and I try to remember to practice that.

[Guest warriortigerheart]

Tabbycat, my heart goes out to you. I am at the end of my rope with the OCD now, have lost all my friends, the love of my life, my mum hates being around me now, and I have just lost my job. Having ME on top of all this is unimaginable. You sound very positive however, which is important. I envy you staying with your folks. We tried that, but my dad is - in my eyes - disgusting. He is ex-merchant navy and really revolts me sometimes. I couldn't stay there. Now it's progressed so far, that I see my mum as contaminated because she lives with my dad, so I cannot even hug her or bear her to touch me. That is excruciating as my mum is the most important person and I love her dearly. It hurts her too. Our relationship is cumbling. It's ike, you have this horrendous, crippling condition which is punishment enough in itself, but then you get punished even more when you can't cope with it.

How are doing now? How is the treatment panning out?

[Guest lizinlondon]

Hi warriortigerheart. Your OCD sounds like mine. I can't hug my family too because they are contaminated. It is more like an emotional contaminaton. I have.never met anyone with this kind if OCD before you. I hope I will be able to get over it.I have only just started therapy so it is very early days.