Five hundred miles: remission versus recovery

My partner and I are going to France over the Easter weekend. I’ve been looking forward to the trip for months, believing that being virtually symptom-free will mean being able to enjoy myself in the way I used to when I was well. I am being naïve, of course, or perhaps just unrealistically hopeful. Packing should remind me, because I have to make sure I take not just my regular meds, but backup supplies in case of loss or theft, plus emergency meds in case of unexpected crisis.

And so I stand at the kitchen counter, going through the Tupperware container I keep my many drugs in. I make sure I have enough antipsychotics, enough lithium and enough Movicol for my daily needs. I pack Gaviscon in case it’s required and throw in a pack of over the counter immodium, just in case. Finally I make sure I have diazepam in case of emergency, and small extra doses of quetipiane (25mg and 50mg) in case of sleep problems.

As I pack, I try to decide whether to take any Movicol on the day of travel. It is one of four different drugs prescribed by my GP in order to address the side effects of my antipsychotics, and the one I find most useful. While quetiapine has brought me a level of stability that nothing else can match, just as it slows my mind down it also slows down the rest of me. My metabolism; my mind; my digestive system. I don’t want to get too graphic here, but my life is hugely affected by the fact that on quetiapine my digestion has pretty much ground to a halt. Delayed gastric emptying causes indigestion (although that’s improved lately) and has a devastating effect on my bowel function. Things get so bad, so regularly that I have been coached in how to recognise the symptoms of a ruptured bowel, just in case. It’s something that causes me huge amounts of stress and distress. This makes Movicol vital, yet I find it difficult because it tastes so foul. Try to imagine a drink that is one part sea water, one part diet lemonade and one part tap water. Worse, it somehow always seems to be warmish, no matter what temperature water I mix it with. Every single time I try to get it down I remind myself how necessary it is, but I still gag and retch. The results can be unpredictable, too. Sometimes it barely seems to work, at others it works somewhat too well so the GP has advised me to carry immodium with me, just in case. We are both aware of the ridiculousness of taking a remedy to address an overstimulated bowel caused by a remedy to address an underactive bowel caused by a drug that’s supposed to make me feel better, but it’s necessary. Every day I try to work out the costs and benefits of taking a sachet of Movicol, or two, or none. A long car trip feels scary in this context.

The trouble starts when we find a two-hour delay at Eurotunnel and our ETA shifts to 9.30pm rather than the planned 7.00pm. What to do about my quetiapine? If I take it at my usual time, I may fall asleep before arriving at the hotel and will certainly find it impossible to eat a meal. I decide that I will have to wait until arrival, even though this is likely to cause me problems the following day.

In the morning, my partner tries to rouse me. “Come on. We’ve got another day of driving today and we need to have breakfast before we hit the road.” I think about responding and try to engage my vocal chords, but all that comes out is a long drawn out, “Uh-huuuuuuh.” I notice that the corners of my lips are cracked and their surface feels ragged, a legacy of the stuffy nose and dry mouth which are also caused by quetipaine.

A quarter of an hour later, M tries again. “Come on! Or we won’t get breakfast. Which we’ve already paid for.” Part of me wants to tell him to leave me alone, that I don’t care about breakfast, or the car, or anything. I feel so sedated that the only thing that matters to me is sleep. But somehow I stand up and make my way to the shower, hoping protracted exposure to hot water will help. I am quiet at breakfast, and do the minimum required to get my bag packed and in the car, before climbing into the passenger side and tilting my seat back.

M pokes me several hours later, telling me that we’ve reached the mountains which, thanks to the prolonged cold weather, are still snowy. I am grateful to be woken because the road is eerie and beautiful, taking us through snow-laden forests and thick patches of fog. We meet few cars on the hairpin bends as we wind our way up to the pass. I also feel guilty. Part of my role when we drive in Europe (which we do a couple of times a year) is to keep my eyes on the map, look out for vehicles coming from the left, and help M to stay awake and alert on long journeys. I have failed on all counts.

That evening I have the same decision to make about my quetiapine and, as if the hour’s time difference wasn’t enough to confuse me, the clocks are about to go forward in both Britain and France. I decide to take it at 7.30pm local time, which again results in a huge struggle to get up on Sunday. I can’t believe how horrendously sedated I feel. We have come so far on this short break that this is really our only full day in the mountains, but all I want to do is tell M to go away and leave me in bed. While I have been sleeping, he has been doing research and has identified somewhere we can go for a walk, so after breakfast I make myself put one leg in front of the other and walk to the car. I look at the route map he’s found and see walks of an hour, an hour and half, three hours, and I feel so exhausted that I want to cry.

By 11.30am we are at the start of the walking trail and putting our boots on. M suggests I wear waterproofs but I simply can’t be bothered and we have a short, pointless argument that I know perfectly well is entirely down to my tiredness and irritability. We set off up the hill and I again have the sense of having to move one very heavy thigh forwards, then the other, consciously pushing my legs up the track carrying my body behind. Within an hour we are in forest where every tree is heavy with snow, exploring the remnants of German WWI trenches. There is complete silence, no traffic, no voices, not even any birdcall, and I realise how glad I am that M made me come outside.

On Easter Monday we head home. I should take my Movicol before we leave, but I have just eaten breakfast and I can’t face feeling nauseous on top of my croissants and chocolat. I decide I will worry about it later and get into the car, where I promptly fall asleep again. I wake at lunchtime, worried that because I’ve been asleep I haven’t drunk enough water to ensure that my lithium blood serum remains normal.

I have enjoyed the weekend much more than I would have done if we’d stayed at home. Nonetheless, I am disappointed. The experience has served to remind me that even if I am in remission now, I am not in recovery. The recovery I want to achieve means attaining the level of control and stability I felt when I was last well. It means simply getting on with my life. And at the moment I can’t do that, because the side effects of the meds are almost as disabling as the original symptoms were. Obviously I am happy that I have very few bipolar symptoms now. And so I understand why people keep telling me that I should be proud of how far I have come since this time last year. But here’s the thing: compared with where I was, yes, remission is great. Fantastic. But that’s not my goal. I just want to feel normal, instead of participating in this this ceaseless “choose your own adventure” life of trying to work out the potential consequences of every decision. And so I find it difficult to be positive about where I am right now. True, I’ve managed to get off the rollercoaster, but I’m still hoping to leave the theme park. Or, to put it another way, I may have walked 500 miles. But to get back to what feels like the “real me”, I have yet to walk 500 more. Step by effortful step.

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