It's Psychosomatic

Ok so. (I want to start saying everything this way.)

I don’t know quite who really knows this, but I do believe in God. I used to not. I used to be really against God and religion. But like many people, when I really didn’t know what to do or who to turn to, I asked for help as though someone were listening, without seeing anyone there, and help came. Now, even though I don’t always stick up for biblical claims, I can’t really leave the idea of God alone. I just feel that there is something there. I can’t describe it. It’s just my baseline feeling.

I question it sometimes too. Clomipramine made me feel really holy, and that does make you wonder where such a belief comes from. Could it be a symptom of a malfunctioning brain? It probably could be.

Anyway, what am I trying to say here? Maybe it has more to do with sticking to your guns and less to do with God and religion. Maybe not. Not sure. Anyways, not that long ago, confronted with someone saying something against what I believe, I did what I never usually would and came out and said what I really think. Usually I would just laugh and go along with them, but I just thought, fuck it, I can’t be bothered to lie to you. Because, it really is tedious to hide what you think. In fact, you lose something and it’s something that’s hard to get back. 

God is my baseline feeling, and it underpins my worldview. I have doubts as well, and I certainly don’t live my life according to what my belief would dictate. I don’t know if that makes it wrong to say out loud, like I’m staking a claim to something I don’t own. I don’t know if that means it’s not worth losing friends over.

But sometimes I think you have to get it wrong to get it right. You have to be honest and messy and just have faith that that’ll do. That’s what I’m trying.

Today I think I have made the agonising decision to give up trying to write my MSc dissertation and finally put to rest this qualification which I originally gave up almost exactly one year ago, before this brief reprise.

The decision is agonising for more reasons than I think I will even be able to sort through and write. Firstly, I don’t like to admit that I just couldn’t do it and that I have failed, but I have. This seems particularly bad because I had a glowing track record, even within the taught component of this very MSc. It’s also agonising because I have put in quite a lot of work at this point, neglecting other areas of my life in the process, and because I do care about the topic. It’s agonising because so many of my friends have managed to get so much further than I have at this stage, having completed MScs and who knows what else. It’s agonising because I don’t know that I will be able to bear all the things that people will say, to my face or otherwise. It’s agonising because I do know at least that I could have done things to make it more likely that I would complete the qualification, and that some of my choices were poor.

But then part of me thinks that this MSc was never really meant to be. I was in a state of total incapacitation when I left last year, and surviving was something of a success in itself. I only joined the programme in the first place because I was at a loss for what to do, and maybe I was never fully qualified for it. In truth, I never treated it with much respect either, so perhaps this is what they call karma. 

At this time I do not know whether I feel as bad as I do because of the dissertation, because I am ill again or because of something else. Perhaps a combination. Perhaps the dissertation has made me ill again, as a result of spending too much time alone in silence with nothing but my mind and words on a screen. 

I don’t know whether I will even survive this misery of failure. I don’t want to look at myself in the mirror. I hate myself. I don’t even know myself. I don’t even want to know myself. If I could erase me so that I never was, maybe I would. But since I can’t do that, the real question is, how do I (and not for the first time, I remind myself) find a way to start all over again?

Ok so.

Psychs and stuff are past.

I almost feel like a functioning human being.

I actually go out and see people.

Often, though, I think that this is just not as easy as it should be. I know, I know this sounds ridiculous, but I find interacting with people difficult a lot of the time. I find that I have to almost study how to do things, and my brain is always working overtime. But, I’m quite good at studying things and I’m thinking that maybe I should just take it seriously and start to explicitly study them. As in, if there’s a formula for a certain type of banter, I should figure it out and write it down and memorise it. I realise on the one hand that it is a problem that I have to, essentially, be fake and act in ways that don’t come naturally in order to keep up with people. But on the other hand, studying things is how I roll so at least, in a sort of way, if I make a proper go of it, it bypasses being fake.

I so want to just feel like a normal human being. Not like an alien anymore. Please, please.

I have been ill for the past few days with a nasty stomach bug or something of that kind. Thankfully I’m feeling a lot better today. I’m not feeling any better about clomipramine though. While I was ill I either couldn’t take it or, I can only imagine, it was not absorbed when I did take it. When I started again last night I did so with a heavy heart. My motivations were fear of the withdrawal syndrome and guilt about all the NHS resources I have wasted if I abandon treatment. All the same, I’m thinking about doing what I did before and calling to cancel my appointment, not refilling my prescription and tapering myself off clomipramine as best as I can with whatever I have left. I know that’s horrendously irresponsible and I’m really not being a good role model for anyone who may be reading this. But that’s the honest truth.

I have been thinking over lyrics of songs I wrote in the distant past and I see so many patterns of behaviour repeating. The song I am thinking of at the moment, which I probably wrote when I was about 16, has the following lyrics:

I looked in the mirror yesterday                                                                        

And I knew that I’d be okay      

I no longer care what you say              

Because it doesn’t help me

I looked at an old photograph                

And it doesn’t make me laugh          

But I know that I’ll find myself                        

Where I left me

And I thought        

And I decided

If I want to change, it’s got to be for me  

‘Cos I’m the only one who should determine        

How I want to be              

And I won’t do it so you’ll love me        

And I won’t do it so you’ll be jealous of me

And I won’t do it for something to do          

I won’t do it ‘cos I’m afraid of you                

No no no no

These principles served me quite well once upon a time. I realised that I was being an idiot in trying to starve myself, which is pretty classic teenage girl stuff (I have never suffered from an actual eating disorder and this doesn’t reflect my opinions about eating disorders in any way). The real realisation was not, however, that there was anything wrong with starving myself but that my reasons for doing it meant it could only lead to misery: to be loved, to make people jealous, for something to do, out of fear of judgment. I also realised that all external influences or “help” could never truly help me and that it was all simply a question of me, myself and I reconciling past, present and future. When I sung that “If I want to change, it’s got to be for me” I was not declaring that I should not starve myself to fit into someone else’s ideal. No. I was declaring that if I wanted to stop doing what I was doing, it had to be for me and not because of what someone else judged to be healthy or unhealthy. 

Looking back, I stand by all of that and I can apply it to myself right now. The things that clomipramine is offering to change are not things that I want to change. To me, it’s not truly a problem that I can spend three hours editing a sentence and that when I can’t get it right I might punch a wall until my knuckles bleed. That’s just who I am and I love myself with all my heart. I wouldn’t change that for the world. What I would change is the periodic depressions that cause everything to fall apart. Apparently they are borne out of the tendency to edit sentences for too long etc. That may or may not be so. Assuming that the doctors are right and that it is so, would I rather live obsession- and depression-free or keep the obsessions and bear the depressions that come with them? I think I would rather live with both. If no doctor is able to offer me a solution that purely eliminates the depression, then I guess I must simply accept that no doctor is able to offer me a solution. If I want to change, it must be for me.

Secondly, I will not change so that anyone will love me. Ex-boyfriend, case in point. Thirdly, if being an obsessed, depressed person means I never reach my potential vis career etc. that is totally fine too. Those goals actually are, one some level, about making people jealous, and that’s a temptation I should resist at all costs. Thirdly, I won’t aspire to be cured simply because that is a thing that you do. It is just a “something to do”; it has no substance. Finally, I won’t do anything out of fear. I certainly won’t keep taking clomipramine because I’m afraid of withdrawal. I won’t keep taking because I’m afraid of losing the clomipramine buzz. More importantly, I won’t seek treatment because I’m afraid of what will happen if I don’t. The episodes of misery could get worse and worse, that’s true. But I have plenty of faith that God, the universe, whoever is out there, will take care of me, as it always has done, and send help right to me in my very darkest, darkest hour.

So I think that means that I should start tapering off clomipramine.

I want to emphasise, though, that I still believe in mental illness now as much as I have done in the past. I still believe that it is a biological thing more than it is an emotional thing. I still believe that it has a strong genetic basis. It’s just that I no longer want to see what I have as an illness that ought to be cured. I also don’t want to see it as a character trait, because often it is an alien force that goes against what I feel to be my character. I just want to radically redefine it. I am basing it on a template of  developmental disability that is commonly understood to deserve to be acknowledged and catered for rather than to be treated or made to go away. To try to change it is an act of violence.

I also think that people ought to be able to define what they have in any way that is helpful for them. I think that it is entirely legitimate that someone else who has the same thing as I do thinks of it as an problem that is primarily emotional and that should be treated with a lifelong course of antidepressants, or any other combination of beliefs you care to pull together. They are not wrong. I am not wrong. It often angers me that no doctor is willing to get on my page and see things from my point of view. However, doctors are trained to see things according to a single model and so it is hardly surprising that that’s what they do. I have no medical training, however, so I don’t have to.

From now on it will be up to me to come up with a new way to think about what I have. I  don’t have OCD. I completely reject that title as I don’t believe it has been useful since was 10 years old. It’s still psychosomatic, but it is not OCD. I disidentify with OCD. I don’t have it.

Crikey, this has turned into a manifesto! Don’t take it too seriously though. It’s only how I feel today.

I have finally decided that. I had it when I was little. I don’t have it any more. I dropped clomipramine down a pill a day until last night I took none at all. I feel a bit sick (like motion sickness) and have had incredible nightmares but otherwise, I am fine. This ain’t even as bad as a hangover. I will never take pills again. (I’ve said that before of course.) I’m not sure whether I’ll go back to the neuropsychiatrist to tell him that it’s over or just call to cancel. I kind of want to tell him why he has been horribly mistaken but then again, that’s just petty and he will never listen anyway since he is a member of the Church of Medical Science. So maybe I should just free up the appointment for someone else. I will still be blogging. I still don’t think my mind is well at all. It’s just that I don’t have OCD. I totally renounce that label. I totally disidentify with it. 

A few days ago I saw the neuropsychiatrist again. I had originally planned to think carefully about what to say to him during this short meeting in order to convey the effect that clomipramine has been having on me. I put this planning off, though, for reasons I don’t quite understand. I thus went to my appointment unprepared and in the middle of a hectic day.

Something funny happened to me. I think it began on the way there. I was still trying to go over what I should say in the short time available and I was talking it through with my mum who was driving me to the hospital. I realised that there was no way I would be able to convey what has been going on in my head and that even if I were magically able to describe things accurately, I still wouldn’t be able to reasonably expect action or a change of course from the doctor. So my appointment was pointless. It was an apment.

We arrived and I went to check in while my mum looked for parking. I took a seat in the waiting room and looked around. Inside my head, my thoughts kept going around in circles. I thought of all the things I could say and what reaction I could get and saw that no route would lead to the reaction I wanted. I thought of all the appointments I’ve ever had and how unhelpful many of them have been. I thought particularly of one appointment, years ago when I was (maybe) a junior at college.  I went to see a psychologist about a problem with compulsive eating. This perhaps doesn’t sound like a serious problem, and indeed it wasn’t serious, but it was a problem nonetheless and one that I had managed to make no sense of on my own. However, the psychologist seemed not to understand at all what I was talking about and looked at me like I was nuts for even being there. 

Then she unearthed another issue which I really hadn’t come to talk about and latched onto it, deciding in a split second that that was the thing for which I needed treatment. I was shocked that she could problematise something for which I had not sought help, something which I did not consider an issue. (I’m sorry I don’t describe what it was - maybe I will talk about it at some point soon.)  It put me right off her and the therapy. I couldn’t concentrate for the rest of the appointment but, amazingly, when I got out, I was happy. I was so happy because I realised that I could take care of myself, that I didn’t need any help, that I wasn’t broken and that I knew exactly who I was and how I should be. I got outside the building and called into reception. When I told the lady on the phone that I wanted to cancel all of my appointments (I had a follow up with the psychologist and I was also seeing a nutritionist) she assumed that I wanted to reschedule. When I reiterated that, no, I just wanted to cancel them, she still didn’t quite seem to believe me, but went ahead. I was thrilled because it meant I was done with doctors and done with pathologising my behaviour. 

Snap back to the waiting room of Department of Clinical Neurosciences. I started thinking about how no professional ever seems to really help. They have given me hope when I have been at the bottom, and in that sense have been useful and important, but thus far the only person who has ever really helped me deal with any of my problems is me. All of my rock bottoms started to rush through my head: me on a log in the woods somewhere, crying; me on the floor of my grandfather’s old office, crying; me on the ground outside a locked church, crying; me on a street, crying, desperately trying to move backwards towards the lights. 

So I started crying. I wanted to get away! I wanted to get out of there and be free and figure out how to help myself instead of taking stupid pills which give me stupid side effects and come and see stupid doctors who may know everything about medical science yet seem to know nothing about the human mind. I cried bitterly as the doctor came to get me, I cried my way through the appointment, I cried while standing in line to book my next appointment, I cried in the car while I waited for my mum to book the appointment that I was crying too much to book, I cried in the car on the way home and once home I cried my way onto the sofa upstairs. There I lay and  recovered.

I seriously thought about going cold turkey on the clomipramine. Part of me just really wanted to see what would happen. Part of me thought that I needed to stop taking it to be “clean” - that has to be the OCD part. But I have kept taking it because the doctor told me to try it for six more weeks and because it has pretty much just makes me very happy all the time and I’m scared to lose that feeling. I have been reminded that it can be difficult to tell the difference between joy and sadness. At their peak, they seem to be the same.

OCD takes up quite a lot of my time and quite a lot of my thoughts (not only thinking about obsessions but reflecting on the nature of the disorder and the fact of having it). However, in the day to day, people who see me outside of my home environment probably wouldn’t recognize that anything was wrong. Some days that’s because not much is wrong. However, even when it very much is, I don’t think it’s very obvious unless you know what you’re looking for.

Since I went quite a number of years without thinking about myself as having OCD, because it was relatively mild or not my most prominent problem, I never quite brought it up explicitly with my ex-boyfriend. I think that was an error because, by the time it became a serious problem, he didn’t - wouldn’t or couldn’t - modify his assumptions. I’m not casting blame (for the record, we parted quite amicably) but it has to have been a major cause in the breakdown of that relationship.

Partly due to this experience, sometimes I now feel that I am obliged to talk about having OCD because, in the situation of getting to know someone quite well, it just seems like it ought to be out there. It seems more honest and somehow fairer and I think in the long run it makes things easier for me. For example, if I’m not drinking I can say it’s because it doesn’t mix with my medication (or my disorder in general) and the awkward conversation has already been had. Furthermore, there is a remote chance that someone might be faced with me freaking out and I’d rather they knew where it was coming from beforehand; seeing the look on someone’s face when confronted with an unexpected panic attack in someone they assumed to be healthy(ish) is a horrible experience and having to explain what’s going on in that situation is very difficult.

I never feel that I need to hide that I have OCD. I’m not sure whether I’ve ever felt that. In fact, I often want to talk about it, just conversationally, because it is such a big part of my world, although I stop myself because I’m wary of boring people. But, at the same time, I am embarrassed to talk about it and I am definitely embarrassed to pass the link to my blog on to people I know and who I may have known for years. I force myself to do it when it seems appropriate and I am pleased to say that, as yet, only good has come of it. Plenty of good.

So, thus far, my experience tells me revealing that I have OCD to people I know is a good idea.

I didn’t sleep well last night. I was waking up at least every hour and struggling to fall asleep again. In the morning I got up without difficulty but then after doing the shopping with my mum I came home and fell asleep on the sofa. I had to get up to be interviewed by someone conducting social research but now I feel as though I could easily fall asleep again. I also feel a wee bit miserable. Rather than looking at my to do list and thinking, “Wow, all these fascinating things to get stuck into!” I’m looking at it and asking “What’s the point?”

I suppose this is just a standard off day, but then again I am tempted to blame clomipramine. I had another day just like this while taking it about two weeks ago and at the time I felt sure that clomipramine was to blame. It bothers me that I can never know whether clomipramine has anything to do with anything. I’m due to bump up the dose again so if I do that tonight I’ll be interested to see if it has any effect. I saw my GP yesterday to check on my progress but we didn’t discuss much. I don’t make good use of these appointments.

In the meantime, how to get on and do all the things I have to do? Unfortunately today is an unstructured day that relies purely on my motivation and planning to get through everything. If only I had somewhere to be and some obvious motions to go through I could handle that much better. I thought that writing here might help me to figure out how I was feeling so I could move on. Perhaps it has a little.

Literally. His name is Rafa and he’s a 15 month old border collie. Except he doesn’t look much like a collie since he’s mostly black. Rafa likes balls. He really likes them. If a ball is flying, Rafa is close behind. I love Rafa but he can also drive me nuts and make me miserable. He’s not terrifically cooperative. He has his own agenda, and I suspect it usually has to do with balls. I tell Rafa that he’s like a slasher movie. You turn around and he’s there, wielding a ball, although you didn’t hear him come in and you really thought you’d tidied up the balls. Creepy. 

But Rafa is cuddly and waggy so more often than not it’s nice to see him. He always greets me when I come in the door, with the most incredible enthusiasm. Sometimes, quite a bit of the time, he even does what I tell him to and it makes me extremely proud. It is incredible to be able to communicate such a lot with such a different animal. Rafa is funny. He seems to have a knack for comically timed yawns. One of his most comical moments, though, is when he does what the trainer calls “wall of death”. This is when, for no apparent reason, he runs around and around at top speed, practically bouncing off the walls, until he wears himself out and collapses in a doggy heap.

Sometimes I think Rafa and I are remarkably alike. Obsessive and compulsive? Check. For Rafa this must surely centre on balls. Nervous? Check. Rafa is nervous around many things, including backpacks. Allergic? Check. Rafa gets hives like me. Overly health conscious? Check. Rafa doesn’t do rain, if he can help it. Prone to ill health? Check. Thank goodness I live around the corner from a vet. Prone to burning ourselves out through over exertion? Check. Please see “wall of death” above. Bit too smart for our good? (I don’t mean to flatter myself because I don’t really mean this in a good way.) Check. Too often Rafa knows what’s coming next, making it difficult to clean his paws, administer medication and generally do what’s good for him. 

I’m learning about myself through Rafa. For one, I now know about the limitations of my patience but, more interestingly, I think I’m learning about OCD. It has been fascinating to see just how much of Rafa’s behaviour looks like it is purely genetic. Since the age of five months, when I got him, he has developed many identifiably collie behaviours without having had the possibility of learning them from other collies. For example, he often circles the ball instead of retrieving it as though he were rounding up a sheep. It’s amazing to watch. I have much less difficulty in seeing OCD as, to a large extent, hard-wired into my brain from birth having seen Rafa herd imaginary sheep. Secondly, I empathise with my difficulties by empathising with Rafa’s. Sometimes he works himself into a terrible state over kayaks on the canal. He barks and pulls towards them as though he had rabies or something. It takes all my strength to restrain him. I ask him to sit and I see he tries but he can’t. He just can’t. He sits for a second while crying as though in physical pain then jumps up again. I just have to get him out of there. I could cry thinking about him fighting with himself as he tries to do what he knows he should and fails. It’s like me fighting a compulsion.

So, yes. Rafa, or Rafula as we sometimes call him (think Dracula), is creepy, cute and fascinating. I’m so lucky to have him.

This isn’t necessarily an approach I pursue and I sometimes even flagrantly disregard it, but I do find it very interesting. A chronic illness, physical or mental, is commonly thought of as something that requires management. It can’t be cured, so you have to deal with it permanently, and you want to optimise the way you deal with it in order to optimise your quality of life. This is the basic idea as I understand it. That involves different kinds of decisions. For example, in the case of OCD, over the medium term, you might need to decide to pursue a specific treatment plan which combines medication and psychotherapy. Over the long term, you might decide to pursue a career that is minimally stressful. On a day to day basis, you might consciously choose to pace yourself so you don’t become so tired that your symptoms flare up, if your symptoms flare up when you’re tired. As everyone is different, everyone’s management plan will be different. Someone who values their stressful career highly may need to manage their condition through stricter day-to-day management. Someone who doesn’t wish to take medication may need to pursue psychotherapy over a longer period. 

Logical though it sounds, in practice it can be tricky. Managing physical pain is something you do quite instinctively. If your arm hurts when you move it a certain way, you avoid moving it that way and you avoid participating in activities that might call for that arm movement. Mental illnesses, and plenty of physical illnesses, don’t give you that kind of instant feedback to guide your management plan. You have to learn by trial and error what works and what doesn’t and with infinite factors affecting you at any one time, establishing what’s what and achieving that optimal management can take a lifetime or more. You learn gradually how much work you can take on without it leading to a crisis. You learn gradually what signs indicate that a crisis is brewing and alter your how daily management strategies when they arise to avoid reaching that crisis point.

In some ways, the idea of managing a chronic mental illness provokes a bad reaction in me. I have learnt to make last minute decisions according to which way the wind blows and to have faith that what is meant to be will be. I like to live my life that way, even if it often doesn’t work out well. This seems quite incompatible with a sensible management strategy. I also disagree with the idea of accepting that mental illness imposes limitations. I don’t want to mark mental illness out as something special in that sense, because it isn’t. Everybody has limitations of their own and decisions to make with regards to that. However, in the case of non-mental illness, I think many would recognise there is a lot to be said for refusing to accept limitations. On the other hand, perhaps because of OCD, I like the idea of adopting a management strategy as part of my ritualistic ways and so on some level the idea of management also appeals. It promises the kind of routine and protocol that I enjoy working within. If I could adopt management of my condition as a ritualistic thing in a healthy way, that could be quite powerful. 

There should be a conclusion to this but I’m not sure what it is, because I have an internal conflict. The side that is winning out right now is probably the side that thinks management is silly. As I’m feeling reckless, I would rather go with the flow and take the repercussions than be sensible.