As it’s mental health awareness week I thought I should finally get round to something I’ve been meaning to do for a while.
I write this, not as a sufferer – or former sufferer – but as the support mechanism – carer - for my wife and it’s intended to be a …..memoire? A light at the end of the tunnel? I don’t know quite what I intend it to be, but if even one person reads this and is helped just a little, it will have been worth the time.
When it first became obvious my wife needed help, I knew nothing of mental health. For that matter, I still don’t. I turned to the internet for information – what could I do to help, what to expect, how long will this last and so on.
What really struck me, is the sheer weight of people in a similar state; the volume of people desperately looking for some ray of hope to cling on to, all asking “how long will my meds take to kick in”, “I’ve been on for 4 weeks now and I still feel terrible”. Very few people come back to these forums once they’re …..recovered? functioning? Not sure how to describe it, but it’s the human condition that determines this kind of illness is all consuming when you’re “in it”, but a bad dream when you’re on the other side, that you don’t want to be reminded of.
This translates in these forums to a vast number more posts desperately seeking some comfort from the number of posts giving that comfort and contributes to a sense that you’ll never get out of it.
You will. You need to keep the faith.
Our story is a good couple of years in the making. For a while, nothing has gone quite “right” – we’ve had a couple of grievous family illnesses, some difficult work situations, problems with the kids, money is always tighter than it should be and so on and so on.
I think each set back came in such quick succession that she just wasn’t able to bounce back from the previous set back before the next one hit.
For me, a mental model that describes it quite well is being on a staircase where the higher up you are, the “better” (more stable) your mental state. In normal rhythm of life, you have a set back and it knocks you down one stair, but you “just feel a bit down” and in time you step back up to the top.
In this case, I think she got knocked down one stair, then another, then another. For each step further down you go it takes a longer time to get back up the stairs by one step until you reach the point where you can’t actually start climbing back up without needing someone to help.
I can’t say there was *a* trigger for the “oh shit, we need help” moment, but there was a really dark day in the winter where all was not right at all and I realised I had to get her to the doctor. The most important step is that you find it within yourself to ask for help. At this point I will direct the reader to my earlier comment, that until I’d seen mental health issues first hand, I don’t think I’d ever HAVE seen it (if that makes sense) – so it’s not that people won’t help, they just need to know you need that help.
So, off we went to the Doc. As it happens, our GP is permanently chockablock with a three week wait time. Couple this with the natural desire not to say it’s an emergency and we ended up just paying to see a private GP. If this is an option, PLEASE bear it in mind. Money is simply not relevant at this point. If you reach rock bottom – getting yourself on the ladder to recovery is far, far more important. I cannot praise the doc enough. She was incredibly empathetic, she understood the challenges and actually gave the first bit of “hope” that this wasn’t just the new normal or indeed that feeling this was ABnormal. Sertraline 50mg was prescribed, along with a strong recommendation for a course of CBT (strong recommendation because, don’t forget, this is being privately paid for and she couldn’t prescribe it on the NHS). As it happens, financially we were able to do this, but if for you it isn’t an option, go and see your NHS GP and get on the waiting list asap
Now. Here’s the thing I would really urge anyone who finds themselves in a similar situation to really try and understand. Sertraline is not a magic bullet. It is not like taking an ibuprofen for a headache – half an hour later and you’re back to normal. Fortunately Anna (not real name) didn’t have side effects too badly and actually “doing something about it” gave a very small initial lift.
As is well documented here and elsewhere, it takes a LOOOONG time for sertraline to start to impact. We were told 6 weeks min, it was more like 8. Even then, it is almost like before starting on Sertraline there were better and worse days hovering around a very low average mood– But in the initial stages of medication, there stopped being any of these “up” days, which contextually makes things feel worse. In retrospect, there probably weren’t any “down” days either, but I think to a degree when you’re that low, even a very tiny uptick in mood is a huge relief.
Be aware, therefore, of the “not feeling anything” doldrums. This manifested in a couple of ways in our case – really notable were a total lack of sense of humour – not just ceasing to find my incredibly funny jokes funny (What do you call a Monkey in a minefield? A Ba-boom! See – comedy genius?) but to just not see the humour or joy in anything. Everything was just totally flat. The other very notable demonstration of this is that Anna felt very much as though she were permanently cast adrift in the middle of the sea and sinking, with the only thing holding her up being me.
As time rolled on, Anna couldn’t feel anything improvement wise for a long, long time. However–crucially, as the outsider looking in, I could see glimpses of her coming back. I quite like analogies – the image here is that if, in your normal as-good-as-you-ever-get state, you are a full pint of beer, then the “cry for help” moment is like having dropped the pint. The beer is seeping into cracks in the ground and there is broken glass everywhere. As the sufferer, Anna was just broken glass on the ground. There was no part of her left whole. What I could start to observe was the pint glass reforming…..still completely empty of any content, but the basic glass was coming back. It’s important to call this out here, because as the “patient” Anna still felt no better, but as the “carer” to be able to see ANYTHING that indicates the problem is moving forward is crucial – both for the purpose of supporting the patient, but also for your own sanity and to know that this might just not be forever. I *think* this was somewhere about the 6-8 week mark that I started noticing this improvement.
CBT was helping, but I think Anna was frustrated at paying so much money when the therapist doesn’t “say” much, just listens. There were a few nuggets of very helpful input, but from my point of view, I would say don’t expect miracles quickly out of CBT. In our case the mental stress of paying so much for private sessions in London probably came close to balancing the positive impact for Anna.
Around about the 8 week mark, we were back in with the Dr and agreed an uplift to 75mg. At around the same time, Anna went for hypnotherapy (long story how that came about) but that seems to have helped to uncover quite a lot of the underpinning issues and really helped. In combination with the uplift in dosage, things slowly started to get a whole lot better – continuing my slightly tortured analogy from earlier, the pint glass started filling up again slowly.
It is really important to understand that the uptick in situation and mood is not down to any one thing – in this instance, it was CBT, drugs (and dosage) and hypnotherapy, coupled with the family taking the load off as much as we possibly could and then a family holiday. The latter bit really helped, because it coincided time wise with the other bits and gave a change of scene for a week, where she wasn’t just looking at all the things that needed doing around the house, at work, with the kids. If I were pushed - I’d say that this was one of the big things as it helped break the cycle.
And so, here we are now. It’s taken probably 18 weeks to get to where we are, which is the glass is pretty much rebuilt and there’s probably a good half a pint in there. But some days the pint glass falls over and some of the content spills – so it’s not “just” refilling the glass. we're aiming for now, but getting the glass on a steady table. We’re very much not back to an even keel and there’s a lot of work left to do, but for the most part Anna is much better able to deal with everything.
If this rings any bells with you, then please know it DOES get better. However hard it is, you have to keep putting one foot in front of the other. Find a tiny part of your brain that can still rationalise and lock away the thought that life is seasonal. However hard the winter and rain tries to hold on, the sun will always come out eventually.
Key learnings:
It is a ******* hard and very long road back. It takes a whole bunch of guts to face it. You have my – and every other person that’s come across this illness - full respect for finding the balls to face it.
Know – both as the sufferer AND as the carer - that it is a very long process to anything like recovery. You will both be desperate for any signs of improvement and they may be a long time in coming. Find the courage – both of you – to put one foot in front of the other and to keep doing it. You WILL get there.
***be kind to yourself*** - Anna didn’t feel like she could do anything at all, she found no joy in anything and constantly beat herself up about ‘being a burden’. To those who love you, you are not a burden – or perhaps better phrased (in my case) as a burden that I will happily carry. Let your friends and family help, let them carry the load for you until you can face it. You are not “mental” - you are poorly. If you broke your leg, you’d go to a doctor and get it put in plaster and not feel bad about it. Do the same with your head, just because you can’t “see” the illness in the same way as a broken limb, does not mean it’s any different in the way you should approach it.
As the carer – I hope that some people like me are reading this; facing their own “oh shit” moment. Not because I’d wish this on ANYONE, but to know someone else has been through it – knows that you feel scared witless and not knowing what to do to help. From my experience, all you can do is the best you can and that is, often, enough. Be ‘there’ and unburden the sufferer as much as you can, even if that means shouldering more than you think you can bear yourself for a while. I mean by this, do the cooking, the cleaning, the washing. Take the kids to their various classes and don’t bitch about it (although you will be knackered and WANT to have a good old moan). Be aware that – speaking from somewhere on the up slope of recovery – the sufferer probably can’t tell you what’s wrong. It’s not “you” or the kids, or work, or any other individual thing that you can go and fix - it's everything and nothing all at the same time. You’ll find yourself asking “are you ok”, “how are you feeling”, “can I do anything” more times than you thought possible, but don’t stop.
Anna really, really didn’t want to see people, but felt better when she did. Don’t FORCE this on them by inviting everyone you’ve ever known for a party, but gently and firmly carry them along, even if that’s just going out for a pizza.
Beware, it is a big load to carry and you MUST look after yourself. Many was the time I felt that the analogy of Anna sinking and me holding her up was apt….I felt like I was swimming in the ocean trying to keep her, our kids, and “the home” above water, but no-one was holding me up. More than once I felt I was going under myself…so you need to get your own support network to make sure you have an outlet to avoid this until such time as the first faint kicks for the surface come from the person you’re looking after themselves. Can’t stress this enough.
It is NOT a linear recovery. You will absolutely not feel 2% better a day for fifty days and then be “fixed”. We had a period a couple of weeks ago where we had about 2 and a half weeks of REALLY feeling good. I thought all was back to normal, but then there was a crash. Never to as low as she had been, but really low nevertheless. That was a reality check and a real shock. For both of you, you have to expect this. Try as hard as you can to be able to enjoy the good days and compartmentalise the bad, so you can lock them away, safe that tomorrow will be a better day. And if tomorrow ISN’T better, the day after will be and so on.
To be clear, we’re really not out of the woods yet, but as I say, “Anna” is back in the room. She’s able to cope and we’re getting there. The fear is that it will never “go away” fully again, but then none of us know what tomorrow holds.
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