I haven't written in a few weeks because I have been busy writing something else, something important that will be published in the near future so watch this space...
In the meantime, I'm receiving a lot of stories and messages from people, all of which are important.
The sad thing is that the research papers that are being written about us do not give the whole truth. There is a reason for this and whether anyone believes me or not it is because the system itself is corrupt. The truthful research paper written about me has mysteriously (and conveniently) disappeared, so I have NOT given consent for the latest one. There's no point.
So what we patients must do is expose our experiences OURSELVES and that is what this reader has done, and she has given me permission to share it in her own words here.
This is what she has to say.
Hi,
I remember you telling me earlier this year that there will be light at the end of the tunnel. Well, first of all you have to get the diagnosis and treatment right. It has been staring me, and psychiatrists in the face for 4 years. My OCD. Diagnosed for over a decade. (I will never forgive the 8 psychiatrists that have treated me over that time, (both NHS and private - including Maudsley experts) and will send them ALL information on how to treat OCD (??!!), so no other person with OCD has to endure what I have. It's been ignored and swept aside.
I have had a diagnosis of clinical OCD and anxiety disorder since I was 23. I'm 40 in February. I came of my meds for pregnancy. I relapsed. Same OCD. Same theme. Same intensity. All day no relief. What you MUST do for OCD is use SSRI's at maximum doses for at least 12-16 weeks. Even if you increase the dose you must stay on that for 12-16 weeks before increasing again or switching. Totally different to depression, which is lower doses and a 4-6 week response. So basically, what they have been doing with me since February 2018, is putting me on a drug for 4-6 weeks, then seeing I have no response, upping it, no response 4-6 weeks and immediately switching it. So in fact, it turns out I'm not treatment resistant, I have just been under depression protocols for 4 years. Not OCD. I have been telling psychiatrists its OCD relapse since day one, but failure to treat it caused a catatonic depression, that completely stopped my life for over 4 years, and I lost all that time with my son. The depression was caused by the OCD - I was not actually depressed - if you get what I mean. I knew that all along. Its like when my brain was bombarded with OCD for 1 year, all day every day, with no relief, the brain just shut down. Plus physical postnatal changes probably contributed to it too. When my paroxetine went to 50mg, after 10-12 weeks, I started to feel something. When I went to 60mg, I started to get relief after 10-12 weeks. 60mg maximum dose. Just gone to 70mg but it's over BNF guidelines (often used in OCD) so I'm currently trying to get referred to Dr Naomi Fineberg at the National Specialised OCD service in Welwyn. Which is a nightmare, and I've currently got about 6 complaints going, including with my MP, about my local secondary service who are refusing to refer me, saying I need 3 more sessions of therapy. You couldn't make this shit up.
The most distressing thing about what remains now, is that I will feel better, lighter, can switch attention easily, then I will dip (‘Brain lock’ as opposed to depressed mood), and the better days are just not enough. It really gets me down. But then you could say that I’m only at the beginning of OCD treatment, after nearly 5 YEARS. I experience pain. Real physical pain. My brain is locked up – ‘cognitive inflexibility’ the signature of OCD. Every time I go to do an action, its the mental equivalent of pushing against a brick wall. And one day is a very long time in this pain as you know. But then the next day the shit feeling will randomly disappear. And then randomly appear again two days later...and so it goes on. Its 100% chemical something is going on. But no one can tell me what the hell it is. And no one really cares. I think that’s what hurts the most, you are back functioning, but in a lot of pain - but as long as you are functioning that’s ok. NO ITS NOT.
Went to London today with my son to join one of Melanie Leahy’s protests. We are calling for a statutory public enquiry into Essex Partnership University Trust. I would be dead if left to them. Felt like shit. But I went. Knackered. I’m also really involved with Lyn Richardson and her charity Everglow Rebecca Kruza. Lyn’s daughter Rebecca took her life when her baby was 8 months old. Lyn found her. A few weeks earlier Becky had been prescribed mirtazapine, felt shit, no one listened to her, just left with no follow up as usual, she thought ‘it must be me, I can’t carry on’. Just horrific. They put me on mirtazapine too - I felt like a zombie and could barely see, or walk. That was a close call for me aswell, but I was suicidal through so much of that medication. Because they blame the ‘illness’ and ramp up the dose even more!
As a naïve 23 year old I went to a psychiatrist. I could not function at the time because of OCD/anxiety. He put me on an SSRI. Tried coming off a few times over the years. Went back to non-functioning. Now, I’m definitely on SSRI’s for the rest of my life. Yes, I would say my brain cannot function without them now. Is it dependence? I believe so. Could the OCD/anxiety have been dealt with another way? I think so. But its too late for me. SSRI’s are the only way I can live a somewhat ‘normal’ life now. They must not be dished out in the way that they are still. I should be the minority of people on them, who cannot live any other way, because of past mistreatment. People must find every other alternative to deal with it, before going on SSRI’s.
I have had many fantastic years of life on these drugs. But at the same time, they have ruined my life through dependence, meaning I could never have had a child safely. I’m bloody lucky my son is good and I’m still alive. But I do wonder if I will ever get better.
I’ll leave my aunt’s story for another time!
Louise
Yes Tom - please share my story wherever you can. OCD like other mental illnesses is treated terribly, because it’s lumped in with anxiety and depression - it should not be treated in that way. Psychiatrists are clueless on it. A Maudsley specialist said I maybe on too much at 40mg! That is not enough for OCD! Need to be max dose. Just look at anything by Naomi Fineberg or David Veale. Best people for OCD in UK.
I applied to be the subject off the article below - it describes exactly my experience - but what makes mine worse is I was already bloody diagnosed! But this young lady beat me to it and got the article.
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