Who am I?

[malina]

After about a year into the biggest relapse since my diagnosis, I can finally say that I am feeling A LOT better! Still not fully there, still have some big compulsions to deal with but I am not plagued every single day by thoughts of self harm and that is wonderful. I think that ERP really did the trick, I have really been struggling with it and was afraid that what I had to do was too extreme or that it would make me worse, but a few weeks ago I decided to change my thinking and accept these possibilities and continue anyway, to cope with the intrusions day by day and not allow myself to fall into rumination. And like magic, I feel more stable than I have in months! Also this forum, I don't post a huge amount about my own problems, but just reading everyone's stories and the advice people share has taught me so much! 

Feeling better has made me realise just how much OCD has taken from me and my sense of self. It's as if I was being kept locked in a small room and someone has come and open the door, but I can't move because I don't know where to go or what to do with this new freedom. I think that a big problem for me is that my biggest compulsion is avoidance of being alone (at home) and that means that I've had to give up on a lot of my interests. I used to love having time to myself but I can barely remember what I did or why I enjoyed it so much. I am also just scared that this is all a trick and that it'll just come crashing back. 

I know that it's probably a matter of time and continued effort and exposure. It's just that I got better after my first big bout of OCD but had never truly learned to trust myself again since and I think that is partly why I relapsed. I just wondered if people can relate to this? I guess I don't just want to get back to some baseline normal, I want to feel happy and not just content because I'm not having horrible thoughts each day. 

 

[dksea]

Forgive me, but my first response to reading the title of your post was "24601!"  (apologies to those who don't get the reference).

Your comments actually remind me of something I've read about people who spend a long time in prison.  Some of them re-offend, not because they are interested in a life of crime, but because they feel overwhelmed by the freedom of life in the outside world and being incarcerated, while obviously not great, is something that is at least familiar to them.  In fact, I think a lot of OCD sufferers can remain stuck because they are willing to accept the misery they know over the unknowns of recovery.  Recognizing that you have these concerns is good awareness and wanting to overcome them is, I think, a good sign.

One thing I would recommend is to be patient with yourself.  You don't need to get back to "normal" all at once.  it might be helpful to come up with some goals to work towards.  You can start small and build from there.  Maybe pick an activity you used to enjoy or think you would enjoy and make a plan on how you could get involved with that.  Another technique that worked for me was to make rules for myself to follow about what I would and wouldn't do, and use those rather than deciding in the moment whether I would do something.  For example, I had a rule that I would participate in any social activity I was invited to (subject to a weekly limit).  So if I was invited to dinner out with a group of friends, maybe my anxiety would make me want to say no, but I would follow the rule and say yes.  Aside from a few exceptions (I already had plans that day with someone else, I had a professional obligation, I was ill, I had already done X number of social events that week), I had to do it.  I also tried to set realistic expectations.  For example it didn't have to be the best night of my life, it didn't have to be fun 100% of the time.  It was ok to go to an event and be bored.  The first step was to force myself to join things, then once I was no longer reluctant to do that I could be more picky about which ones I did.

[leif]

4 hours ago, malina said:

After about a year into the biggest relapse since my diagnosis, I can finally say that I am feeling A LOT better!

So great to hear malina! you've worked hard and kept at it--so glad it's paying off!

4 hours ago, malina said:

Feeling better has made me realise just how much OCD has taken from me and my sense of self. It's as if I was being kept locked in a small room and someone has come and open the door, but I can't move because I don't know where to go or what to do with this new freedom.

well that is a great start that at least the door is open

4 hours ago, malina said:

I just wondered if people can relate to this? I guess I don't just want to get back to some baseline normal, I want to feel happy and not just content because I'm not having horrible thoughts each day. 

I think for me getting back to happy things in life where every move didn't feel like just another exposure exercise was just a gradual process of continuing to move out into the world. At first doing the things were all exposures, but then as the anxiety about them went down they became my fun things again. I really tried to incorporate lots of things I would have enjoyed in the past. 

You mention staying home alone as your ongoing avoidance...I'm sure as you tackle that one and come to feel more comfortable with it, you will soon get back to enjoying things again.

 

4 hours ago, malina said:

I guess I don't just want to get back to some baseline normal

I can really relate to that. I have to really search for the motivation to keep pushing myself to stretch out further, not just stay in a "good enough" stage. I know that as long as i let OCD continue to place restrictions, not only am I keeping myself limited now, but i feel it also tends to end up slipping back where OCD gains even more power.

[malina]

On 21/11/2019 at 01:02, dksea said:

Forgive me, but my first response to reading the title of your post was "24601!"  (apologies to those who don't get the reference).

Wait, I don' get the reference...enlighten us please 

On 21/11/2019 at 01:02, dksea said:

Your comments actually remind me of something I've read about people who spend a long time in prison.  Some of them re-offend, not because they are interested in a life of crime, but because they feel overwhelmed by the freedom of life in the outside world and being incarcerated, while obviously not great, is something that is at least familiar to them.  In fact, I think a lot of OCD sufferers can remain stuck because they are willing to accept the misery they know over the unknowns of recovery.  Recognizing that you have these concerns is good awareness and wanting to overcome them is, I think, a good sign.

One thing I would recommend is to be patient with yourself.  You don't need to get back to "normal" all at once.  it might be helpful to come up with some goals to work towards.  You can start small and build from there.  Maybe pick an activity you used to enjoy or think you would enjoy and make a plan on how you could get involved with that.  Another technique that worked for me was to make rules for myself to follow about what I would and wouldn't do, and use those rather than deciding in the moment whether I would do something.  For example, I had a rule that I would participate in any social activity I was invited to (subject to a weekly limit).  So if I was invited to dinner out with a group of friends, maybe my anxiety would make me want to say no, but I would follow the rule and say yes.  Aside from a few exceptions (I already had plans that day with someone else, I had a professional obligation, I was ill, I had already done X number of social events that week), I had to do it.  I also tried to set realistic expectations.  For example it didn't have to be the best night of my life, it didn't have to be fun 100% of the time.  It was ok to go to an event and be bored.  The first step was to force myself to join things, then once I was no longer reluctant to do that I could be more picky about which ones I did.

What you say about the prisoners makes a lot of sense and I get it. It's that the OCD is so painful but if you deal with it long enough, that pain becomes familiar and sometimes it's easier staying with the familiar pain than freedom, which is unfamiliar. I've had OCD my entire life, having intrusive thoughts is one of my earliest childhood memories. Having spent 30 odd years like this gives me a lot to unlearn. On some level it is exciting to think that I may be starting a new chapter in my life, with a freedom I have never known because of this disorder. I just hope that I can make it and, as you say, being patient is the key. I like the idea of setting these small rules for myself and I think that what you say about setting realistic expectations is really important. I sometimes get really frustrated or disappointed when activities that are meant to be "fun" don't feel that way, but not every night out will be the best night of my life.

[malina]

On 21/11/2019 at 04:58, leif said:

I can really relate to that. I have to really search for the motivation to keep pushing myself to stretch out further, not just stay in a "good enough" stage. I know that as long as i let OCD continue to place restrictions, not only am I keeping myself limited now, but i feel it also tends to end up slipping back where OCD gains even more power.

I remember that we talked about this before and I think it's such an important issue. I spent so much time (at least 10 years) being in a place that was just "good enough". I was getting by and my compulsions became so engrained in my daily routine that nobody noticed them and they became so easy to do. This is real a danger because I think that OCD doesn't stay contained forever, the more you allow it to take hold, the more it'll grow. So the challenge is to keep pushing ourselves. We can motivate each other 

 

 

[dksea]

22 hours ago, malina said:

Wait, I don' get the reference...enlighten us please 

Haha, its from the musical Les Miserables.  There is a song called "Who am I?" and the final line is "Who am I? 24601!" (The main character is revealing himself and his former prison number to save another man being falsely accused of being him).  I've heard the song so many times (original London cast soundtrack) so whenever I hear that phrase it IMMEDIATELY pops in to my head
 

 

[dksea]

22 hours ago, malina said:

I sometimes get really frustrated or disappointed when activities that are meant to be "fun" don't feel that way, but not every night out will be the best night of my life.

Great insight, and I definitely understand this sentiment.  We deal with negative emotions so often with OCD that we feel like the goal has to be NO negative emotions.  At least for me I still sometimes struggle with the idea that not feeling "great" or "ok" is normal sometimes.  Being tired, or bored, or a little melancholy, etc. doesn't mean OMG OCD is taking over.  I don't have to freak out about any little negative (or not super positive) situation.

[malina]

9 hours ago, dksea said:

Haha, its from the musical Les Miserables.  There is a song called "Who am I?" and the final line is "Who am I? 24601!" (The main character is revealing himself and his former prison number to save another man being falsely accused of being him).  I've heard the song so many times (original London cast soundtrack) so whenever I hear that phrase it IMMEDIATELY pops in to my head

Oh of course, I've seen the musical as well! So there we have it the answers to the biggest questions - what is the meaning of life: 42, who am I: 24601 

9 hours ago, dksea said:

Great insight, and I definitely understand this sentiment.  We deal with negative emotions so often with OCD that we feel like the goal has to be NO negative emotions.  At least for me I still sometimes struggle with the idea that not feeling "great" or "ok" is normal sometimes.  Being tired, or bored, or a little melancholy, etc. doesn't mean OMG OCD is taking over.  I don't have to freak out about any little negative (or not super positive) situation.

Yes to all of this! It seems that any deviation from feeling good triggers warning alarms and I guess that is because we are wired to be hyper vigilant of any danger (real or perceived) 

[Closed for repairs]

Also, getting rid of the OCD is a start not an end.

You still have to live your life.

Take not being able to use a public toilet, lots of sufferers put in massive amounts of effort to get to the point that they can use a public toilet.

And you know what...

It's not that great.

Turns out it's just a step on the road to getting on with stuff.

The reward is not using the toilet , it's being able to do other stuff cos you are not worried about toilets.

But you still have to do the other stuff.

And let's face it that's a bit scary.

But at least the reward should be better than using a toilet.

(This would all sound better if I could think of more synonyms for toilet, that weren't rude or childish, I've used the word so many times now it's lost all meaning!)

[Closed for repairs]

My counselor tried to get me to think of all the things I could do with the time I saved from not doing compulsions, and I couldn't think of anything.

I've got to the stage where I don't even consider doing stuff because I think something bad will happen, I've got so used to it I have no ambitions other than being left alone, in peace.

 

[Madchoc]

Hi Malina, really good post, keep going, it’s easy to say I know but you give other people HOPE, thankyou xx

[malina]

12 hours ago, Closed for repairs said:

Also, getting rid of the OCD is a start not an end.

You still have to live your life.

Take not being able to use a public toilet, lots of sufferers put in massive amounts of effort to get to the point that they can use a public toilet.

And you know what...

It's not that great.

Turns out it's just a step on the road to getting on with stuff.

The reward is not using the toilet , it's being able to do other stuff cos you are not worried about toilets.

But you still have to do the other stuff.

And let's face it that's a bit scary.

But at least the reward should be better than using a toilet.

(This would all sound better if I could think of more synonyms for toilet, that weren't rude or childish, I've used the word so many times now it's lost all meaning!)

 I get what you're saying! Like I'm afraid of knives and I just used a sharp knife to chop up some veg, but is making a salad really a reward? If it was chocolate maybe...

12 hours ago, Closed for repairs said:

My counselor tried to get me to think of all the things I could do with the time I saved from not doing compulsions, and I couldn't think of anything.

I've got to the stage where I don't even consider doing stuff because I think something bad will happen, I've got so used to it I have no ambitions other than being left alone, in peace.

I totally relate to this, I used to be really ambitious when I was younger. I've always had OCD and always been anxious but I had this "bring it on" attitude regardless. But when I was 20, I had my first episode with these self harm fears and had a terrible university counsellor who made the experience so much more traumatic than it needed to be and I never truly recovered. I got better and got on with life but ever since my wellbeing just seems sort of fragile, like I can never go as far as I want to in life. There has been so much subtle self sabotage because I feel like if I go too far or if I'm too happy, it'll all come crashing back. I don't think this, I understand that it is illogical, but it's how I feel. But then I'm in my early 30s, if I live the average life I've got another 40-50 years ahead of me, surely it has to be better than this! 

I think they key is to start small and go on from there. If you don't even consider doing stuff, maybe start doing some simple things that you enjoy, there has to be something. Just start doing it regardless of how you feel. I find that I dread a lot of "fun" activities, but then really enjoy them once I get started. Hang in there, its going to get better!

Edited November 25, 2019 by malina

[malina]

12 hours ago, Madchoc said:

Hi Malina, really good post, keep going, it’s easy to say I know but you give other people HOPE, thankyou xx

Thanks Madchoc, that means a lot! I think that all of us just have to keep going, we don't really have any other option. I have absolute faith that you're going to get better too xx

[leif]

16 hours ago, Closed for repairs said:

Also, getting rid of the OCD is a start not an end.

You still have to live your life.

Take not being able to use a public toilet, lots of sufferers put in massive amounts of effort to get to the point that they can use a public toilet.

And you know what...

It's not that great.

Turns out it's just a step on the road to getting on with stuff.

The reward is not using the toilet , it's being able to do other stuff cos you are not worried about toilets.

But you still have to do the other stuff.

And let's face it that's a bit scary.

But at least the reward should be better than using a toilet.

(This would all sound better if I could think of more synonyms for toilet, that weren't rude or childish, I've used the word so many times now it's lost all meaning!)

I don't know, for me just being able to do really simple things does seem that great. Going for a visit to a friends house, going for a bus ride, going for a walk, hell even taking the garbage out and it only taking me a few minutes feels just amazing after having gone through a period where all that seemed so impossible. Maybe over time that will seem like not a big deal but honestly to just feel that level of freedom from compulsions just feels great. I like just being able to enjoy simple things without thinking about all the compulsions i'll need to perform because i went out to a coffee shop for a cup of coffee or something. 

I will say though that I've never been an ambitious person!

On 23/11/2019 at 16:59, malina said:

I remember that we talked about this before and I think it's such an important issue. I spent so much time (at least 10 years) being in a place that was just "good enough". I was getting by and my compulsions became so engrained in my daily routine that nobody noticed them and they became so easy to do. This is real a danger because I think that OCD doesn't stay contained forever, the more you allow it to take hold, the more it'll grow. So the challenge is to keep pushing ourselves. We can motivate each other 

 

 

 

yes so important! I had a bit of a tough day today and days like this its easy to remember why we don't leave it at 'good enough'!

[Closed for repairs]

7 hours ago, leif said:

I like just being able to enjoy simple things without thinking about all the compulsions i'll need to perform because i went out to a coffee shop for a cup of coffee or something. 

That's what I mean by living your life,  just the ordinary stuff, that people take for granted.

But life doesn't just happen you have to work at it, and if you have never done anything "because OCD" then getting going can be daunting.

I have never been to a friend's house for years.

It's not the OCD as such, I haven't got any friends.

Why because I don't make the effort, I don't go out, I don't even watch TV much any more. I go to work, come home , and that's about it as far as a social life goes.

The OCD causes me immense distress, and misery, and it will be a joyful day when I get it under control. But if I really want to feel the benefit of that freedom then I've still got a lot of work to do.

[leif]

6 hours ago, Closed for repairs said:

That's what I mean by living your life,  just the ordinary stuff, that people take for granted.

But life doesn't just happen you have to work at it, and if you have never done anything "because OCD" then getting going can be daunting.

 

Oh I see--yes I get what you are saying. 

6 hours ago, Closed for repairs said:

The OCD causes me immense distress, and misery, and it will be a joyful day when I get it under control. But if I really want to feel the benefit of that freedom then I've still got a lot of work to do.

Yes i remember when my OCD was at that stage. It feels pretty awful. That's why its so worth the work to get out of it. Are you on any meds? 

I was thinking/wondering for myself if I don't give the meds enough credit for adding enjoyment to my life. Like i give them credit for helping with the OCD but maybe they help me in just day to day enjoyment as well, they are anti-depressants after all.

 

6 hours ago, Closed for repairs said:

I have never been to a friend's house for years.

It's not the OCD as such, I haven't got any friends.

I think that's too bad--you have so much to offer people! Just looking at how much you offer the forum--with good advice, sympathy, humour...

6 hours ago, Closed for repairs said:

Why because I don't make the effort, I don't go out, I don't even watch TV much any more

So maybe those things could be added to that list of what you would do if not tied to OCD. Go out somewhere on the weekend, watch some TV...

[malina]

8 hours ago, leif said:

I think that's too bad--you have so much to offer people! Just looking at how much you offer the forum--with good advice, sympathy, humour...

Agreed! I really enjoy reading your posts and your sense of humour @Closed for repairs

I think Leif offers some good advice, start with some simple things, watch some TV that should be simple enough to start with

[dksea]

23 hours ago, leif said:

I don't know, for me just being able to do really simple things does seem that great. Going for a visit to a friends house, going for a bus ride, going for a walk, hell even taking the garbage out and it only taking me a few minutes feels just amazing after having gone through a period where all that seemed so impossible. Maybe over time that will seem like not a big deal but honestly to just feel that level of freedom from compulsions just feels great. I like just being able to enjoy simple things without thinking about all the compulsions i'll need to perform because i went out to a coffee shop for a cup of coffee or something. 

I think that's a great attitude and something I think people should strive for in general, to be more aware of the simple joys in life and appreciate the small stuff!