Living My Best Life Now, Two Years After Asking "Do My Medications Help?"

Two years ago.  I was suicidal every day.  I was taking prescribed psychotropic drugs.  And I was enduring a range of hallucinations, some of which were highly distressing.

I'd begun to read more critical writings about psychiatry though and had begun to ask questions about myself and the way my mental health had deteriorated even while taking the drugs.

I'd already made two attempts to stop taking Trazodone, both of which I'd aborted very quickly because the withdrawal was extremely hard, verging on utterly unbearable within a couple of days of removing one capsule from the daily dose.  Trying to get off my pills and capsules seemed to be an impossible goal.

But I'd had thoughts running round my drug affected mind and wrote this:

Do my medications help?

I don't know.

My mental health was struggling, largely while getting all the ramifications of an autism diagnosis straight in my mind. I thought that would be easy. It wasn't. So I took a drug for the related anxiety. Then I had to take another. Because after a lull the anxiety was back in abundance.

Generally since that point my MH has been worse, and I can feel drug side effects too even this long into taking them. I'm more sluggish, there's some lost focus, and an appetite gain that's led to weight gain too. Heck, I have more anxiety and panic symptoms than I had before my first dose of Trazodone and the later addition of Pregabalin.

And all those hallucinations? Well they're not on the lists of common side effects so medics want to treat them as something separate. But I wasn't seeing purple men and ghost armies before taking the medicine. My only other really big hallucinations period was while taking tricyclic antidepressants. I was assured there was no link and was given antipsychotic meds. I didn't take them. I took myself off the tricyclic instead. And the hallucinations vanished. Magic!

There are other symptoms I could talk about too.

I've been doing a lot better recently but it's very, very hard work. I have to fight for everything every day and have pushed myself hard in the last 2-3 months. Considering how bad the autumn was I'm doing incredibly. And then add on the stresses of moving house and the end of a treasured relationship and it's more incredible still. There's a long way to go and I know there will always be difficulties but I'm a long way in the right direction too. I am determined to keep doing incredibly and to see what happens. Being autistic means I will always have a somewhat reduced capacity and a range of issues - that I so often mask well. I may also always have other problems, or may not. But I remain determined. Life will be lived and enjoyed. I will progress.

March begins. There is much to look forward to. Much determination. A diary that's getting to be more full than it's ever been. Almost. But I'm also mentally knackered from the hard work and have cried lots this morning. And all the while I feel slightly in a drug created unreal state.

Are the medications actually helping? Have they been helping since that the novelty of that initial drugged feeling of calm wore off? Is any remaining anxiety relief outweighed by the sense of the unreal?

I don't know.

Am I long term worse off with medication and is it tackling underlying causes at all? Certainly the stresses that led me to ask for a low dose of something (a dose later increased) don't even exist now. At least these medications haven't screwed me over like so many others did.

Trouble is, the side effects of missing even one dose are obvious. Miss two and I feel dreadful.

That's withdrawal not underlying mental health but it's also particularly distressing. They say you can't really be addicted or dependent. I beg to differ. Coming off meds is hard. But at least, when the time comes, there shouldn't be brain zaps like I got when I had to cold turkey off fluvoxamine or else face liver failure. Yeah, not fun.

Much to consider.

The image I posted with those words.
The sun sets behind the gates to Heaton Park.

Consider it I did, concluding that I needed to get off the drugs and see what remained once I was off them.  I worked out after further reading that they weren't tackling the symptoms of a mental illness but were affecting my brain and my life in ways that were harming me more than helping me.

I researched drug withdrawal and discovered resources and suggestions that could help me.  One resource I've recommended many times since then is the Harm Reduction Guide to Coming Off Psychiatric Drugs, written by Will Hall and published by the Icarus Project.  I recommend it for the information it contains, the pointers to further information, and for the fact that it's free to download.

Even with the help and by tapering my drug reduction in wise ways my withdrawal process was very difficult.  I didn't have the brain zaps like I'd experienced before.  At least not many of them.  I was fortunate in that, far more so than someone I met a few weeks ago for whom the brain zaps have never stopped.

Uncovering a complex traumagenic dissociative disorder half way through the withdrawal process made things even harder and it took a long time to come to terms with it.  There were a lot of tough times, not helped by the length of waiting lists for specialist help in the NHS.  Too many people have first hand experience of those and the effects of funding and staffing gaps.

Some people fully supported my withdrawal from psychiatric drugs.  Some thought it was absolutely a foolish thing for me to do.  And some were angry with me, even taking it as a personal attack against them for taking their drugs.  But, even though I was suicidal every day for another year, I did not regret my decision for a single moment.  Not even when suffering the worst of the withdrawal.

Eighteen months ago, after a taper that might have been better off slower, I took my final dose of a psychiatric psychotropic drug.  Apart from one diazepam tablet taken on a particularly bad night last year after uncovering some trauma related to rape.  Sometimes a pill to temporarily ease the pain can be a very useful thing.

There were plenty of bad times.  One year ago today I wrote:

Tough day for head.

Nearly phoned crisis team this morning. But they're crap. So I didn't.

Got to something this afternoon but walked out silently because I felt so very rubbish. Wasn't coping well at all.

Tonight is as this morning. Not phoning the crap crisis team because I can make a mug of tea without their advice. There's really not a lot they could do anyway.

The image I posted with those words.
A tree in Heaton park.
Even on the worst days I forced myself
to live as well as I could manage.

There were times when both I and my wife were more worried about my prospects of staying alive than we've ever been before.  There have been lots of bad times in the years we've been together.  Those two years of daily suicidality were the worst, even though in some ways I was more comfortable with myself than I'd ever been and even though I kept pushing forwards, determined to live and have experiences and freedom beyond anything I'd had before.

Two years on from that day of asking whether my "medications," as I still called them, helped I can say for certainty that they did.  Initially.  From the start they masked and suppressed elements of the distress I'd been in, making life easier for a while, something that most of the drugs I was prescribed hadn't done.

It wasn't because they were tackling an illness.  It was because they were dampening some of the difficult parts of my humanity, in much the same way as they would act on a person who would pass no psychiatric diagnostic test - if such a person exists at all as the criteria for illnesses that aren't illnesses become ever wider.  In effect the drugs were covering up parts of my self.  That did help for a while and life was more bearable.

Until it wasn't.  Until I got more ill as a direct iatrogenic (medication caused) result.  Until I needed more drugs to achieve the same suppression effect.  Until my brain adapted.  Or was damaged.  Until the initial mental and emotional wounds festered more, untreated.  Then the drugs contributed to greater problems, as they can do in the long term to many people who then have to decide whether to go through the bitter pain that may be involved in healing and acceptance or whether covering everything with a drug is a better option for them.  There may be merit in both approaches.

Two years on.  I'm free of the drugs.  Free of withdrawal.  I think mostly free of the long-term damage various prescribed drugs caused to my neurochemistry.  I think.  It's impossible to know for sure because I can hardly remember what it felt like before the damage began in the early 1990s.

Two years on.  I am accepting of the dissociative disorder, so accepting that it almost ceases to be a disorder and becomes a benefit.  I have not been desperately suicidal since July 2019, having had my first day without even a suicidal wish in April 2019.  I am definitely not mentally ill and mostly don't even believe in mental illness or the medical model that's currently so influential. I know there are still diagnostic criteria I meet and labels that experts could apply to me but those criteria can never imply a medical illness and most of them are scientifically quite meaningless.  That doesn't mean I will ever downplay distress.  I know distress far too well to ever do that.

Two years on.  I am beginning to be able to rebuild my life.  In many ways I am beginning to build it for the first time.  Six months ago we had the idea that we might have gained enough stability to attempt a small, short, easy course of study.  We'd tried it a year ago, arranged through a mental health centre, and had to drop out quickly because we couldn't cope with it at all.  We tried again and this time we are capable.  So far we've taken seven exams and we'll take four more in the next few weeks.  Seven months after that idea we'll have completed four courses and be half way through two more.  My last exam result was the best score for that exam that anyone studying at the college had ever had, their first ever perfect mark.

As a result of study I'm looking forward to life.  I recently had my first job interview in twenty-three years.  I didn't get the job but my mental health is now such that I could try.  I'm going to be arranging a voluntary work placement, probably with Oxfam, in order to gain experience and fill the gap on my CV that was the only reason why I didn't get that job.

There are other things happening too.  It's a far cry from struggling to find any hope and fighting with suicide every day.  It's a far cry from near constant hallucinations and a drug induced sluggishness.  It's a far cry from living in fear that I will kill myself and for making those around me live with the same fear.  I'm realising too, with some regret, what might have been had not my mind been so crushed in childhood and adulthood.  I'm realising that I am capable, that I can learn and study and do so much more than I ever believed of myself.  And I have learned far better to radically accept the difficult parts of myself, of which there are many.

Such a lot has changed in the last two years.  There is still work to do.  I recognise that.  As of last month I'm not a "mental health service user" or "client."  I may have to return to the specialist centre one day and undertake trauma therapy.  I may not and now definitely isn't the time for it.  I'm still healing from self rejection, from religious trauma, from sexual trauma, from the years of having to act out most of my smiles.

If a suicidal thought surfaces that's now a worst day and I know not to entertain it or let it become my focus.  If there's a hallucination it'll be because I'm very tired and just having the sort of totally non-psychosis hallucination that most people have sometimes.  If I need to cry, I know that's okay.  If dissociative parts have to take over for a while that's okay too.

Two years on from asking whether the medications help?  Life, for all its complexities, is simply better.  No regrets.  Some incredibly hard work to get to where I am.  Probably more incredibly hard work to come.  Yet healing is better without a mask.  Healing is more certain when you can see the wounds.  Healing is more satisfying when you can lovingly embrace the brokenness that had been concealed.

I have no regrets about getting off those drugs.  Only an assurance that it was the right decision.  It's absolutely been worth it in every way.