Experts – who needs them?

We’ve witnessed in the political landscape the lack of credibility ‘experts’ have these days. With Brexit they were deemed unnecessary and we all know we’re living through the Trump Administration’s ‘post-truth’ and ‘alternative facts’ era. Feeling has, in many cases, become more important than actual fact.

The same can be argued about mental health, although for completely different reasons. Because we lack the ability to have our conditions diagnosed through a range of diagnostic tests, I often have felt quite hit and miss with regards a) identifying what I’ve got and b) how the feck I’m supposed to learn how to live with it all. Depending on the clinician (all excellent can I just say from my own experience) I’ve been diagnosed with Borderline Personality Disorder (BPD), General Anxiety Disorder, Postnatal Depression, Bipolar Disorder and PTSD. 4 years ago I received a concrete diagnosis of Bipolar 1 and only 18 months ago I received a concrete PTSD diagnosis, alongside the Bipolar.

And still at every meeting I’m questioned over whether I have bipolar or BPD. It gets exhausting. I have regular cycles of mania and depression and sure I may have BPD traits but it is the bipolar that gets me. It just goes to show how, from definite diagnoses by two psychologists and three psychiatrists can be so different. Sure as hell doesn’t help me with the paranoia – like are you sure you know what you are doing/is there really something up with me/oh dear lord I just figured out this condition now you’re telling me it could be something else…

Over the  years since my pregnancy my knowledge of my condition has grown. I’ve experienced the crushing darkness of postnatal depression, the despair and horror of not being able to hold my own baby. I’ve experienced the psychosis of both Bipolar and PTSD, imagining huge green globs of mould floating in the air because of the damp conditions we were living in, and my daughter suffocating as a result – not to mention the regular suicidal images that permanently would repeat in my lowest moments.

Now I’ve also learnt about burnout, which I am currently off sick for. Did you know that the symptoms combine with Bipolar and PTSD to make you absolutely off your rocker? I  was hallucinating at train stations of being hit at high speed by one so that it could all just END. Burnout aggravated my friendly gremlins that I live with every day, and made things 100 times worse.

I am in therapy again specifically for burnout with a therapist who I don’t think has graduated yet. I think my psychologist (who has graduated) is doing her level best to keep me off work for as long as possible i.e. till my contract expires in June and I can go onto benefits again. It’s soul-destroyingly crushing to admit I can’t work any more but that’s another blogpost. The thing is, I don’t get signed off work by my own doctors. Here I have to go through something called the ARBOdienst in Dutch, which is essentially occupational health, and they make the decision about what I do.

So I have my psychiatrist, my psychologist, my therapist, my ARBO doctor and I just found out today that that occupational health doctor may be changing. (Needless to say, immediate freak-out.) I’m not complaining about the level of care I receive here, by the way, which is fantastic, but just – how many times do I have to go through piles of paperwork and people to tell them I’m sick? How many experts do you need to see that I clearly can’t function in a roomful of people? Am I the expert, to tell them what I have – over and over again?

Again, I’m not complaining, just having a whinge at the amount of bureaucracy. At least I get to see qualified doctors. In the UK a friend of mine just had to go to court to plead his case that PTSD was, indeed, worthy of being on benefits for after a penpusher at an outsourced Department for Work and Pensions, with about as much qualification to make a decision as my Jack Russell, decided that he was well enough to work. I mean, come one, that’s someone full-on writing alternative facts!

Post-truth society again, eh? Wonderful thing.

It’s interesting, watching the clash of fact vs delusional thinking in some countries that’s going on in the world. Perhaps we’ll see the redefining of the word ‘expert’ at some point?

Hiatus over??

Well it was a forced hiatus. Sorry I was away for a whole bloody year and more, but I have been reading and keeping up with all you amazing bloggers surviving and (somehow) thriving and being generally inspirational 🙂

I was super ill. I had a massive manic period, followed by a bout of deciding to stop eating, followed by getting better and realising that I had to do something to get my family out of the trap we’d found ourselves in, so I returned to work. Fuck mental health my god if there is anything that will put a person into poverty – which yes, exists in in developed countries too, all things being relative – it is shitty mental health.

Did I also mention I melted off my hair nearly a year ago? I was trying to go blue and made the mistake of leaving the bleach on for too long. So as well as feeling like crap I had Doc from Back to the Future hair for ages (well I still do but at least I can tie it back into a pony tail now!). I literally did not leave the flat for 4 months till I had to at Christmas.

So far so good ish? It’s a senior role, it’s tough and I have been in floods of tears and had to take days off when I just could not get out of bed, but I am doing it and have lasted beyond six months in a role for the first time in Fundraising since I was 30 (I am 38 this year – actually in less than a week). I have so much I want to share on my blog and so many ideas for things I want to do – but the good thing is that I am on Fluoxetine which has helped with the crippling anxiety and paranoia I was getting on top of the lithium and quetiapine, and we stopped psychotherapy because regressing was was actually making me worse.

We are MOVING HOUSE which such a big deal I cannot even begin to tell you how much I have come close to committing suicide because of our horrendous neighbours (and you know, it is serious not just an expression – their shit dance music is blaring and keeping my baby awake as I write but NOT FOR MUCH LONGER WOOOO). Once I am into my new house, hoping work does not kick my ass too much and so on, I want to return to this blog properly.

The most important thing is that my beautiful baby girl is thriving and doing so amazingly well. I am proud to say she is a typical toddler now at 2 and so gorgeous she makes my heart burst every time I look at her. So, more to follow, I will return to this slowly. Thanks for hanging in there with this blog of mine 🙂

Update from my scribbles post

DH opened a letter just now with a blood testing form. My lithium is apparently too low. I guess that would explain my capacity to write over six thousand words a day for my fan fiction? The compulsion to write literally came out of nowhere two months ago – apparently about the time my levels began to drop and the shit with our neighours kicked off (I forgot to mention it in my last post – we had to call the police. I just wanted to die, feeling unsafe in my own home), and my frenzy began.

Now, perhaps the dumbass psychiatrist might actually acknowledge I have bipolar instead of asking me whether I think I have it which is what I got at my last appointment! Why the fuck would you ask me if I have bipolar! Isn’t that your job?!

Anyway, watch this space. I have to test urgently apparently and they want to review my medication. Hopefully more normal service will resume soon.

Writing and scribbles and disconnect

It’s been quite some time since I wrote on my blog. The simple fact of the matter is that I’ve been incredibly unwell. I still am. The only time I have left the house has been to walk the dog. I have been to the supermarket twice in three months. I think I went out with my daughter twice too. I let her daddy take her places, and to her grandma for days at a time because mummy can’t move, can’t cope with anything outside of her head. The real world is too much hard work. I read  blogs from all you lovely people and it’s like I can’t engage my brain with what is going on that I’m reading. I’m completely disconnected from the world.

Suddenly it’s nearly my birthday and the end of summer. Where did it go?

I’ll tell you where it went (you’ll have to click on pic – can’t get it bigger for some reason).

archive of our own

Yep, 257,739 words later and my fanfic is not nearly finished. I’m on my fourth Word document of which there’s an awful lot more that didn’t make it into the story. I started at the end of June – that’s two month’s worth of writing every single day. I think I’m putting out one of the longest stories about Cullen Rutherford and a female Inquisitor from BioWare’s Dragon Age: Inquisition that exists anywhere.

It is probably all complete crap as well.

Every day I spend eight to ten hours a day, sometimes longer, doing nothing but writing. I  have a compulsion to publish – I literally neeeeeeed to publish a chapter a day, even if I know I haven’t edited it properly. I almost faint at the thought of not putting up something, anything on the site. And if I don’t publish then I am agitated beyond belief until I can get behind my laptop, put some music  on and ignore everything but the characters playing out their lives in my head and translating that to Word.

All I do is type, spell check, sense check, publish. Every day.  I have this tension between my eyes I have never noticed before because of the amount of staring I’ve done at my screen. My wrists and shoulders hurt because of the amount of typing I do, and my back is slowly getting ruined by the amount of slumping on the sofa I’m engaging in.

I write sometimes through till 2, 3 or 4 in the morning, having maybe three hours of rubbish sleep. I dream about the story, waking up with my phone clutched in my hand so I can go back to the chapters and read them again. There is simply no room in my head for anything else but this demand my brain has for me to keep going with my story.

Then I get obsessed. Why don’t people say anything ? Was that chapter just a pile of shit? Why hasn’t anyone liked my work today? Who are all these people looking at my story then not leaving anything at all? If someone un-bookmarks me it’s like I’ve been stabbed through the heart.

Someone commented negatively – oh no I need to have more sex in the story. Oh wait, less sex in the story. More violence, more angst, less fluff. No, there needs to be more fluff, they should be in love, the story needs to move on, no it needs to do this. It becomes crippling. What was something that I did for fun and distraction has suddenly become stressful and competitive. I’ve lost all confidence in myself. Yet I still continue.

I get frustrated and edgy with anything that takes me out of the alternative reality that I am living in – it’s outright panic sometimes that I am being taken away from my story. Geez, even writing this blog is making me feel a bit like, when can I get back to my story? It’s ridiculous. But I can’t help it.

Everyone that is, except my daughter. But even then, I have neglected her. In more sane moments I have sat there, holding her, weeping, guilt overwhelming me that I have not spent time with her that I should. She is fed, watered, changed, clothed, kept clean. But my emotional distance from everything around me is so great at the moment, I am pretty sure she doesn’t know me at all.

She’s fifteen months now, toddling around like she’s a miniature walking undead. She’s a daddy’s girl. Because daddy gives her attention that mummy simply can’t. The majority of my brain can’t engage. The tiny part of me that is well has her heart breaking that her daughter prefers her daddy to her mummy.

I had an appointment today with the government doctor who assesses me to see if my long-term sick benefits continue. When I  described my average day there was no hiding his concern, particularly when he said it was a clear-cut case and I should not be working right now. For a Dutch government benefits official to say that, you know there’s something wrong with you.

The funny thing was that my husband and I had a heart to heart the day before – first time in months – and I said how much I just missed going to work, going out after work for dinner, or eating at home, exercising, then crawling into bed with a book before going to sleep. That routine and self-fulfillment that working gives you is lacking in my life. Yet if I were to try working right now I’d end up in an even worse state than I am now. I can’t bloody well win.

The only benefit is that I’ve lost around 20 kilo/three stoneish and only have another two stone to go. It’s nice to fit into clothes again. The only downside is that I don’t eat at all. I have survived on two litres of diet coke, the same again in water and the odd bit of chicken or beef.

When I write it out and when I talk to the doctor about it, I realise how abnormal it is. But I can’t stop. Why? The alternative would see me dead. It is better that I exist somehow until my circumstances change, than sit there in my car wondering where the nearest cliff is so I can drive off it. For my husband and I this is the lesser of two evils. It’s been almost impossible for him too. We made it to the zoo the other day, which was fun. So I am trying to get out a bit more.

So that’s the bad side. But there is a good side.

I really do, on a good day, enjoy it. And I am a bit frustrated with myself because I know if I took more time then I’d actually have quite a decent story on my hands. I have always loved writing and in this genre I think I’ve found my niche. Fanfiction has provided me with a means to start exploring my writing and writing style. Not for a minute do I think I’ll be the next Robin Hobb but it’s become my own thing. It’s nice to have a thing for yourself.

I’ve also explored the issue of trauma and how it impacts on a relationship. The main male character has PTSD (genuinely accepted in the fandom as true and BioWare have always referenced Cullen as having experienced significant trauma as a result of torture). The main female character also has trauma as well and I wanted to explore some of the issues I face myself through them. It has been really therapeutic.

It makes my story intensely personal to me as well – I mean, it is for all authors, but I think when you start writing about things that have happened to  you and your state of mind at the time it really becomes something else. There is something about writing about an anxiety attack and putting it out there for people to read about that becomes empowering for me. I have no idea why – it just seems to work. It does then leave me vulnerable too but it’s worth it.

There are lots of authors and editors among our Tumblr mental health community and I’d be really interested to hear your thoughts on what is normal and what isn’t normal because I”m pretty sure wanting to lock myself away in a mountain cabin with no one else to bother me so I can write for days with no sleep is not normal.

How do you deal with it so you don’t exclude all else? And where do you go to read up on things to make yourself a better writer? How do you not make it too personal if you write about your own experiences as a form of therapy? Is there ever a way of stepping back from it all?

I have tons of story ideas now, both fanfic and fantasy and I have decided to try and focus myself more on writing.

My husband reads it and helps me with the plot line. Sometimes we have fun with it, and it became easier when he played the game too and knew what I was on about. It hasn’t been an entirely bad experience for our relationship. But often he has hated the story and wished my laptop to combust so I don’t have anything to type on. Even then, I’d find a way.

Still, here it is. If anyone on the offchance fancies giving it a critique and plouging through so many words I’d be happy to hear it. It’s fun writing about two people in love. It makes me feel all nice and squishy inside. It’s far too long and too repetitive on certain themes but I like the story itself so far.

But, as my husband says, it’s my story and my Cullen and my Inquisitor. Does it matter what people really think so long as I’m pleased with it?! I shall keep telling myself that for the time being.

Cullen x Mage Trevelyan – A Dragon Age: Inquisition fanfic

Fight or flight

TW: discussion on suicide

I no longer know which one is which. I seem to want to do both at the same time.

It has been a while since I posted. Various reasons, mainly that I have been very busy moving back to our flat and my little baby is so active now at the end of the day there is not an awful lot else left in me.

I was mixed about moving back here. On the one hand it is our little space; we own it, and we have the room to just be a little family. Six months of living with the in laws is six months too long. It was making me ill in ways I hadn’t realised, undermining my authority and confidence as a mother, as a woman.

But within a week of being back that which I dreaded has occurred. Our neighbours are cunts. I do not use that horrid word lightly. If I have to listen to one more fucking Polish dance track at full pelt, shaking my furniture and pictures on the walls I won’t be responsible for my actions. It literally is driving me crazy. There are supposed to be noise laws and the police are supposed to come and take noise readings. Of course, in this poor part of Rotterdam, it’s never a priority. This has been going since 2pm – my family were told there was a party tonight just to let us know. Well fuck you wanker, my mental health and wellbeing of my daughter trump any boozefest you may have planned and I fully intend on having  my sweet revenge once your hangovers and comedowns kick in. As soon as our new speakers arrive. Wheels On The Bus at full pelt 7am anyone? I know my baby for one will love it.

We had to leave today. I was driven out of my home by some selfish twat thinking of their own self gratification. Same as most of humanity, no surprise we are so fucked as a species. The noise cuts through me like a knife, giving me such a strong physical reaction. I want to vomit with the intrusiveness of it all. This sound invading my personal space, my safe haven. I feel demented with it all, with the need to flee to the top of the nearest mountain (and I’d have a bloody long trek from The Netherlands to get there), warring with the descent of the red mist to do physical harm to those causing me this pain and trauma. It is all DH can do to stop me hurling bricks through their window when they refuse to answer the door, knowing that we are asking them to shut the fuck up. I dream of having a shotgun that I shoot through our ceiling, or smashing their door down with an axe and jettisoning the sub woofer (which we have repeatedly requested they move from the floor and put a towel under) into the nearest canal, weighed down by their super expensive stereo.

The problem is that these visualisations become close to hallucinations and in the moment I am so lost to my senses I can’t snap out of it. I feel so under threat by this plague of noise I am close to actually doing something illegal – and driven by my illness – in this case PTSD – I actually have no control over my actions. I actually want to die to make.this anguish in my head end. To make this noise stop. I am a suicide risk right now. My baby is safe with her daddy so I can go knowing she is in good hands. Oh how seductive that thought is. I am no use to anyone like this.

I went and drove my car up the road and sat in it for two hours today just to have some peace and calm. Only the need to look on my sleeping baby got me back into the hellhole that my home feels like. The noise amplifies in my head and I start to hear things that are not there, feel vibrations that don’t exist. I am plugged into Spotify, my own dance music on at full pelt to try and drown out the other noise. I almost wonder if I am in some way autistic, my extreme reaction to such noise being so distressing to me that, like my cousin with Aspergers, I need to listen to music with a headset on to face the outside world. Or in this case, be inside with the outside world sat right in my living room like an unwanted guest that refuses to take a hint and fuck off.

In between all of this is despair. How did my life get to this? I don’t live in places where such people live. I left that behind me so long ago. That’s why I worked so hard at university, got myself a career. Yet here I am, unable to change a thing because the mere thought of work leaves me feeling paralysed and we simply can’t afford to live anywhere else. Mental health is wrecking my life, taking my options away, leaving me impoverished both financially and emotionally.

I’ve taken two of the dreaded Quetiapine and I’m on the sofa waiting for them to knock me out. I hate them but I think I need them. I have to detach. I’ll review this tomorrow. I’m sorry this was so ranty. In a way I want to capture this so I can look back and learn from it when I’m not worried about someone falling through my ceiling with their overenthusiastic and undeniably shit dancing.

What next?!

I saw my new psychiatrist yesterday. To say we were underwhelmed would be an overstatement. DH described it perfectly when he said how we were immediately put on the defensive. So this post is a space for me to vent, but also to actually try and muddle through my head what I have to do going forward to take control of my own health again.

There was a really noticeable language barrier for starters. Which if she had read my file should have been apparent and is one reason DH always comes to all my appointments. Except it has never been an issue till now as all doctors are supposed to be fluent in English. And if she didn’t feel confident or want to communicate in English she should have given my case to another psychiatrist.

If she had also read my file as she claimed she had she would have known we were back to stay and had no intention of moving again. But why DH had to tell her three times in the session we don’t know.

Also if she had read my file she would know I have Bipolar 1 with very well documented periods of mania and subsequent depression, so I was left very confused as to the references to Bipolar 2 in the conversation.

If she was really listening to me as a patient she would have heard that I clearly stated I do not have nightmares as a result of the childhood sexual abuse or any other traumatic effect that has happened. I have the odd nightmare same as anyone else but I don’t struggle with them. So why she then listed them as something I was having I fail to understand.

I have insomnia at the moment because I have no stability at home and I fucking hate sleeping on my parent in law’s floor. Funny that. I’m anxious about moving back to our old flat, much though I love it, because our neighbours are so awful and I’m dreading the loud parties with drugs and booze till 3am upstairs where the noise invades my safe place and the police and council did nothing in four years. But we are taking steps to change that and it is better than the 4 of us camping out in someone else’s house. So that’s why I have insomnia.

I have paranoia for sure. I was at a point last week where I wasn’t going to take my lithium any more as I thought the nebulous ‘they’ in my head were trying to alter me in some way.  I can’t deal with loud noises and I look suspiciously at anyone in the street. Literally anyone. I really hate having to leave the house but I have to do it otherwise my poor daughter would never know what other people looked like. I only feel safe when with DH. So this new professional being really quite confrontational was very hard for me to process.

And then the medicine talk. This is the first time a Dutch psychiatrist has just bandied around taking drugs like the were Smarties. I have anxiety through the roof most days but it has been so much better since returning. Quetiapine was prescribed to me in Scotland to take on an as necessary basis. We also reduced my lithium down which had been increased during my pregnancy. We knew I function much better with a lower lithium count and the side effects of too much lithium really push my anxiety beyond coping, not to mention making me very ill. Once I reduced my lithium I was much better with the anxiety. I do not respond well to Quetiapine – in fact I hated it. It turned me into a zombie. Even 12.5mg meant I couldn’t get out of bed the next day. Forget disassociation, of which I am a master manipulator of, this stuff shut me off completely from the world. I couldn’t take it unless I knew DH would be home to look after the baby ad I simply could not function and it actually made me worse in terms of managing the guilt around my child. And, it wasn’t even prescribed for PSTD.

Again, all in my file.

So why was I being pushed to not take Quetiapine regularly, but actually increase the dosage? I couldn’t give a shit if it took a few weeks to get over the side effects, I don’t have a few weeks to walk around like a space cadet. I’m a stay at home mother and I’d be unable to look after my child so who is going to do it for me?

Also, with my lithium usage over several years now, why again would you push for me to increase the dose knowing that it makes me sick and increases my anxiety? If you had read my file, psychiatrist lady, you would know that it is a known issue for me dealt with very ably by one of your colleagues who has sadly now left. More’s the pity. We also know how successfully I respond to lithium, never demonstrated better than when I was pregnant and had no idea what a black spot I was in until my lithium count showed as almost nothing due to the increasing volumes of fluid in me. And I was immediately better when we increased it. So yes, funnily enough I am very aware of how much it impacts and if I thought it would help I would increase it. So how about you listen to me as I’ve been doing this for years rather than assume you know better?

DH thank God just took over at that point in Dutch and said not happening. I was almost shell-shocked at being run so roughshod over.

The final, and perhaps most significant, blow I received in my appointment was to be told that my diagnosis was perhaps not correct. She had read my file and felt that there was Post Traumatic Stress Disorder (PSTD) present but as yet undiagnosed. Now, the way this came across in English was it’s not Bipolar, it’s not BPD but more PTSD.

So my immediate reaction was what the fuck I was just coming to terms with Bipolar what the hell, does that mean I have something completely different? I was so totally confused and also angry given I hadn’t had the chance to talk properly during the session and this bombshell was delivered on just reading rather than talking to me as a person.

When I said bipolar ran in my family she then responded ‘oh well lots of psychiatrists would just say oh it’s bipolar without looking into your history properly’ and DH responded that we had received the diagnosis by her colleagues in the very same centre. To which she looked rather confused about.

So did you really read my file, lady? Did you see the bit by the psychological unit I was assessed by on the floor above us saying it was most definitely bipolar and I had traits of BPD, but bipolar was the root cause? Feel free to slag off your colleagues as much as you like but I can assure you a year’s worth of assessment and multiple meetings reached their diagnosis which was then further reinforced by psychiatrists at one of the best teaching hospitals in Europe during my pregnancy. Yet, on the strength of ten minutes of meeting me, and apparently reading my file which you must have done two minutes before the appointment started, you have decided the collective wisdom of all these others is wrong and you are right. To the point of being pretty rude about them in front of me.

Apparently I do still have bipolar and I do have the BPD stuff. In Dutch it all came out rather differently, or so DH explained to me. Because I don’t think I could survive having to go through a whole reassessment again, I really don’t. I’m struggling to find out who I am as it is and I can’t face the thought of having to start all over again.

And thank goodness I had an appointment with my lovely psychologist right afterwards who explained it properly. That she had always suspected that I had PTSD as well as everything else, but that PTSD alone didn’t explain the levels of psychosis and mania or my reactions so it was now a matter of looking at a combination of things. If it was just PTSD they could treat me one way. If it was just bipolar they could treat me another way. But because of the combination they had to look at the whole and how to approach it going forward now I wasn’t pregnant and full of hormones.

At least I think I have that right.

I’m not denying the PTSD potential. Far from it. What I reacted so strongly to was the word ‘misdiagnosed’ and the subsequent rubbishing of all the previous advice and rejection of how I wanted to manage my condition, which is not to blindly take a drug when I know the side effects it has on me. Again, I am not anti drugs at all but the patient has to be in control of what they are putting in their bodies and the physician has to listen and respect what the patient is saying when discussing the impact of medication. If it doesn’t work then an alternative path needs to be found.

I have always had good and informed dialogue with my psychiatrists previously so this was the first time I came up such a huge brick wall. And one who was just prepared to chuck drugs at the problem without any meaningful discussion. I mean really, give me one good reason why I should put myself and my family through that for a condition that I haven’t even been diagnosed with yet with a drug that has only had a negative impact on me thus far.

Urgh so next steps are for DH to speak to my also very lovely case worker and tell him we want to see someone else. I have to have confidence in who I see or it will make it worse. In the meantime I have my Promethazine back which works when I have insomnia so I’m very pleased about that.

Long term I have to try and get my head around this other hurdle. The one good thing was that I was told I should not work as it is too stressful with will now help with my benefits pathway.

For me too there are whole new areas to think of for research and blogging – the importance of an advocate for the patient, medication and caring for small children, and patient voice. I know they are all huge, recurring issues in the mental health world. I am so lucky to have DH by my side and be my voice when I feel too scared, ill or intimidated. But not everyone has that.

I feel a bit overwhelmed still by the pronouncement so I will take a step back again to process stuff. Perhaps, to end on a positive, it is one step closer in my search for that elusive peace I so crave. I hope so.