The Story of My Illness – Part Two

The long period off work – what I did

Looking back now, I find it difficult to remember precise details of what I did during the long time off work, and how I was feeling. Initially, I did nothing. It isn’t pleasant either to think I did it, or to reveal it here, but there were days where I didn’t feel like making myself presentable. I knew that I had no need to go out and see other people, and nor did I want to. So, if I was lucky, my teeth might get cleaned and a flannel might find its way quickly around me, but that was about it. I was in my cocoon, somehow distant and sheltered from the world, so it didn’t matter. I look back at this with distaste and a degree of shame, because I am normally so fastidious about the ‘three Sh’s’ every day, and about changes of clothing. I rationalise it as being a symptom of my illness, which sometimes feels like an excuse, but deep down I know I’m right and it is an explanation. That doesn’t make it any easier to admit, though.

I also didn’t do much of anything else, either. I love listening to music, reading and watching sport on TV, but couldn’t face any of them. In the beginning, I think this may have had more to do with the constant headaches, migraines and nausea, but the inability to concentrate persisted long after the physical symptoms subsided. I can remember reading the first chapter of the same novel at least seven or eight times in four months. But it was such an effort I never managed to get any further, and the next time I tried it I had to start all over again, as I had forgotten what I’d previously read. So I stayed slumped in my armchair, just thinking, crying, or staring into the distance. I would ‘watch’ TV, but I wasn’t taking anything in. These were the darkest days of the whole episode. I felt so alone, but didn’t want to reach out to anyone, or feel that I had someone I could reach out to. I’d feel like this for days on end – they were my black days, when I had no interest in anything, and had no feelings about anything either. There was just an empty numbness inside me, I felt as if I had no purpose in life and that I wasn’t making a difference for anyone, I lost all sense of self worth and self value. But at least I never felt so bad that I considered ending it – sadly, others are much less fortunate.

I remember the first time I managed to concentrate on a whole TV programme – it was ‘The Killing 2.’ The realisation that I had managed to do that, to sit through a whole hour and know what I had just seen, was quite a revelation at the time. So I started watching more TV as a way of keeping in touch, but I know that I wasn’t behaving ‘normally.’ I like crime dramas, and watch the Alibi channel quite a lot. It may have changed now, but at that time its daily schedule was to repeat in the afternoon what it had shown in the morning. And I just sat there in front of it, watching the same programmes as if they were on a loop. I’m not quite word perfect on Diagnosis Murder but if I see any of it now I always know the episode! This sounds trivial as a side effect of depression but it does, I think, show the way my mind was working – I needed to find something familiar and comforting, something which could become my ‘reality’ and this was it.

But I gradually managed to do more. Each little step felt like a major achievement, but I felt that I was getting somewhere. Little things mattered, like getting ready and going out on days when I didn’t have to, even for a short walk to the station, getting a drink from the stall there, and managing to chat ‘normally’ with the guy who ran it. And on other occasions I would walk up to the town centre, which is a longer walk and is uphill all the way. This felt as though I was really doing something now. And I even managed to work out the local bus timetables – designed by Stephen Hawking with an assist by Einstein, operated by the Chuckle Brothers  – so that I could use the bus to get to the doctor and the hospital, instead of calling for cabs every time. These seem very minor things now, but I can still recall the sense of satisfaction each time I got home again: I’ve done it, I wasn’t sure I could, but I have!

The longer I was off work, the more I felt I could try to do. But everything was being done very slowly, and I really had to concentrate hard even to manage the simplest of tasks. Not being allowed to drive, or wanting to go out, I began online grocery shopping. But even this was a challenge – I’d be changing an order five or six times and would still forget something basic, like the milk! I was still having difficulty concentrating enough to read anything though: I could manage the paper, in three or four goes, but I didn’t manage a book until I was back at work and needed to fill the travelling time. Music came back into my life around Easter, which was nice, but it made me realise how much I’d missed, such as my collection of Christmas-themed albums, none of which had been listened to this time. Gradually, though, I felt that I could cope better with real life and this helped rebuild my confidence about going out of the flat, interacting with people, and believing that I could cope with work again.

Medication and treatment

I have never been a fan of medication. Even with a cold I would resist taking anything if I possibly could, but I had to come to terms with the fact that things were now different, and that I had to be compliant with the prescribed medicines if I stood a chance of feeling better. Initially, I was taking four different kinds every day, but over time this has been reduced to the anti-depressants, with the migraine relief tablets on standby. I have actually had a migraine since going back to work, in October, but as this was the first since March and only lasted for a day it doesn’t worry me. As I said earlier, I know that I am going to be on the anti-depressants for a long time, maybe even for the rest of my life, but I have, I think, come to terms with this. I have no difficulty taking the medications every morning, and have my little ritual to remind myself. It’s the only way I can be sure that I have taken them, but it works for me so I make no excuses for it. The issue I still do have, and will continue to have, is the side effects. I was initially prescribed fluoxetine, which you’ll know as Prozac. But this made me feel even worse than I had before so it was changed to the Sertraline I am still taking today. Moving from one to another required taking a reduced dosage for a week, followed by a week with nothing, before starting on the new drug. The leaflet in the drugs box said very clearly that alcohol must be avoided, but I thought this was because the alcohol would negate the benefits, as I have been told it does with antibiotics. As luck would have it, the drug-free week included the days after Christmas. I really wanted to have a drink, as Christmas lunch with grape juice hadn’t been the same. I was off the medication for a time, so I thought ‘why not?’ They weren’t joking! Even when I wasn’t topping up the levels on a daily basis there was enough of the drug in my system to react violently with the alcohol (a 330ml bottle of lager!). I have never felt so strange in my life! I’ve never taken drugs like LSD but guess that this must have been something similar. So, for as long as I am on the anti-depressants I know I won’t be able to drink. Pouring the out of date beer down the sink was a sad experience, enlivened by the exploding cans!

The other main side effect I have had is the daytime drowsiness that often results from medication, but unfortunately without any improvement to my night sleeping (by the way, I’ll be covering my sleep problems in a separate post – coming soon!). The guidance here is that I shouldn’t drive while I am still on a high dosage, but this will be reviewed depending on how I feel once I am on a lower rate. So having left it unattended for over a year, I recently sold my old jalopy to a firm that destroys cars for scrap. For the first time in 37 years I don’t own a car, and it feels very odd. I still keep looking across to the carport to check on it, and then I realise that it hasn’t been stolen! I’m hoping that I’ll be allowed to drive again by the time I retire, or current thoughts on my future lifestyle will need serious revision!

So, no drinking, no driving. Is it worth it? Unequivocally, YES!!! Without the medication, I doubt that I would be feeling anywhere near the way I do now, and probably would have ended up being retired early on health grounds. My pride didn’t want to accept this, so I’m happy to do what is necessary to be able to live life mostly as I would want to, even at the expense of sacrifices. And the plus side is that it is easier to diet without alcohol’s calories!

Thanks again for reading. The third and final part of my story will be posted tomorrow, following which I’ll be posting shorter, themed pieces.