(Un)Happiness

MARIE: I had a really bad start to the day yesterday. I needed to call the hospital to sort out a mess with Jon’s appointment with a neuropsychologist and his next neurology appointment. This is not the first time I call about this, mind you, as we’ve received a number of contradictory appointment letters – it all stems from an initial minor misunderstanding which has ballooned, as these things do. Last time I talked to them, they assured me that Jon is seeing a neuropsychologist on 13 October and his neurologist on 7 November. We have a letter for the latter appointment, and I wanted to also have a piece of paper from the hospital confirming the former appointment.

You’re only supposed to ring about appointments between 8 and 9 in the morning, but their phone was continually engaged, even though I redialed literally once a minute. Kind of frustrating, but I thought: never mind, I’m just after confirmation, and I can probably get that from the secretary who takes over the phone line after 9am. So I rang her and was told “no-o-o, I don’t see the neuropsych appointment on the system, and actually as far as I can tell all your neurology appointments have been cancelled”.

What? But the nurse had promised me…well, she had promised all sorts of things, but only over the phone. So could I get a direct number for the nurse since I hadn’t been able to get through earlier? “No, sorry, I can’t give that out.” Okay, how about the nurse calls me when she’s free? “No, sorry, they don’t like me to promise that.” Right then, how about an email address for the nurse? “No, sorry, I can’t give that out.” Would it then be possible to make a new appointment through the secretary? “No, sorry, only the nurses can make appointments.” BUT I CAN’T GET THROUGH to the nurses! “Sorry, you’ll just have to try again tomorrow.”

I was pretty close to tears by then. Because I didn’t need this extra complication, but more so because these appointments are meant to ascertain whether Jon has a touch of Lewy body dementia which is just about the worst thing I can imagine. The secretary was nice enough and seemed to want to help, only she was unable to.

So I hung up. And broke down. As in completely and utterly broke down. I stood there in the middle of my kitchen and roared out my frustration and fear and anger – not just at the hospital, but at Parkinson’s, and at life itself for doing this to Jon and to me. It’s just as well we live in the countryside with the neighbours at some distance, or I’m sure I’d have had the police round. The cat was certainly terrified. I roared like an animal, loudly and deeply and from the very bottom of my being and my lungs, and I went on for quite a while. I guess I only stopped because my throat hurt and I was out of breath – if I’d been in better shape, I might still have been at it now.

So I had a good cry, and then I pulled myself together, because what else was I going to do?

Later in the day I sat down to read the new issue of the British PD association’s magazine which turned out to have a cover picture of a loving couple, about our age, who had stopped during a bracing walk on a windswept beach to grin happily at the camera. Do you know, that just made me furious. What the hell are they thinking, portraying Parkinson’s as a disease of happy people? They can just f… off with their grinning and their outdoor gear and their offensive happy-clappy Parky jollity, because that is nothing like the Parkinson’s we’ve got in this house – and the more happy Parky pictures I see, the more aggrieved I (am made to) feel. Yes, by all means look at the bright side and stay positive, but do try to maintain some slight connection to reality, okay?

By the way, I got through to the nurse this morning. She said she thought the appointments were actually still okay as originally agreed, even though they were admittedly showing up a bit oddly on the system. She would investigate and get back to me. I’m still waiting.



Photo by Salim Fahdley.

Frustrations

Another week spent all on my own while Marie earns her keep selling books at a conference somewhere. It has its downsides, and its upsides, but apparently it has no side sides.

So how did I cope? Well, we actually both rather enjoy it when the other goes away for a few days and we get to indulge our various foibles and anti-social tendencies in peace. Thus, with my quiet-loving wife away, I got to keep the radio on at all times, and loud. Likewise, the entire place was one glorious mess with that seriously lived-in feeling I (and the fruit flies) like so much, until about one hectic half-hour before Mrs Neatfreak was about to turn up again. This time, I also got to nap when and where and as often as I wanted.

But perhaps most significantly I went into work on Monday morning on the first day back after my four-week holiday at home. I might as well have stayed home for all the use I was in my insomnia-addled state. As it turns out, I must have looked exactly like I felt, because taking one look at me my boss suggested (and I agreed) that I’d be better off going straight home again on sick leave. OK, I have been unable to function properly for several weeks now, but that was on my own time. But now it’s official, and although this is neither the best job nor the best employers I have ever had, the very real possibility that I may never be able to work again looms rather large. Being officially sick somehow feels much worse than just being sick – it’s got that whiff of the scrap heap about it.

As it is, I am in such a state that I can’t even pretend to ‘keep my hand in' by reading the latest papers, staying in touch with close colleagues, putting in the odd appearance. I had quite a few plans for what I wanted to do last week without Marie here to distract me with fripperies like mealtimes and fresh air. I had great plans to make progress on this book I am supposed to be writing with two good former colleagues, aiming to finish one chapter at the minimum. I was also going to look into a bit of Java script for a website I am building. And I had a good book waiting for me, and I was going to call my kids, etc etc etc. As it turned out, I failed on all counts and got very close to zero – zilch – nada done on any of these plans. Did I feel bad about this? You bet I did. Sure, I am still sleeping badly (see earlier posts), but I didn’t feel so sick that I could expect to achieve nothing at all. A big disappointment, and perhaps the beginning of some kind of learning curve involving the adjustment of expectations so that I can set myself an achievable goal and get to feel good about accomplishing something, rather than asking too much of myself and failing miserably and depressingly.

From everything I've read so far, I'm supposed to be in a kind of honeymoon period with drugs working at peak efficiency and all things running smoothly. When I got the diagnosis of Parkinson’s, I thought ‘okay, I'll take my pills and that will be that for years and years. I'll drive – work – run marathons – be normal.’ Instead, I'm a complete wreck. Where am I going wrong? On general health, I’m better than ever: I’ve quit smoking, hardly drink at all, take gentle exercise almost daily, but that appears to make little or no difference.

My huge worry is that I have been misdiagnosed and that I have in fact got one of the ‘Parkinson’s Plus’ conditions (a fear not helped by me recently reading Life in the Balance by Thomas Graboys, an admirably honest autobiography about Parkinson’s with Lewy body disease which causes dementia). Honestly, I’m crawling up the walls with anxiety. On the other hand, it is also entirely possible that all my present troubles stem from not sleeping – but I’m still stuck up here near the ceiling waiting for a prescription for new sleeping drugs. No matter what, PD is a progressive disease, so I can predict with some considerable degree of confidence that next year will be worse than this year. Ho hum. I wonder what other little jokes the universe has in store for me ….