On Transverse Myelitis and Anxiety

I get anxious.
Yes, I know I am a psychiatrist, but (with all my experience and skills) since being lucky enough to score Transverse Myelitis, all sorts of situations make me anxious. Some of it is daily, and some of it is occasional and some of it is related to circumstances.

The daily stuff relates mainly to movement and toileting.

I am still walking, albeit clumsily and a bit erratic. When I first get up, I tend to have difficulty lifting my feet, so I scrape or shuffle on the carpet a bit, or get a moment’s footdrop, and trip (so far no serious falls, and I do seem to have a good balance recovery so far). When I am tired at the end of the day’s work, going back to the car I am tense and on guard, and taking extra care to avoid foot drop. I would look dead stupid tripping and falling in a hospital corridor!

At night when I have to get up to go to the toilet a couple of times, I stand up carefully from my bed, make sure I have my balance with a bit of a wide gait, and then use my iPhone to light my way round the bed and to the bathroom. The variability gets me down – some days I feel my feet, other days my ‘thick socks’ reach up past my knees. Overall, movement leaves me chronically tense, with moments of minor panic.

Toileting is a real problem, because everything is so erratic. I feel I need to clear out, but there is nothing there. Then small tell tales happen (like wind), and I know I need to be in the toilet pronto. I have to plan every journey – making sure I don’t drink too much before leaving, knowing I can usually manage an hour or so of driving before I am under pressure, knowing where loo stops are in case of emergency. I am chronically anxious that I may have to go to the toilet in the middle of a consultation. So far it has not happened. So far I have not dribbled in public and embarrassed myself. There was only one occasion when I passed wind while lecturing, and I was standing behind a lectern so I think my audience would not have noticed (I hope). But the whole thing makes me have to think my day through carefully, and what I am describing sounds a bit like agoraphobia.

I certainly have been enjoying my 6-month sabbatical writing books and professional papers, and only consulting two days a week. Yes, the productivity has been good, but I made clear decisions not to attend conferences, not to fly anywhere, not to speak after hours (after dark), not to do TV and radio interviews I did all that for 35 years; I don’t need to keep on doing it.

Ostensibly my choice was to protect my time for writing, but secretly I know that I don’t want to go to conferences because it is always hard getting up on stage, it is always hard standing for 30 minutes talking with my pins and needles getting worse and worse. It is always hard standing talking to colleagues, when my focus is on whether I need to go to the loo, or plan the next hour or so.

Why not fly? Because it is all such a palaver, and you have to organise sufficient time for everything, and make sure you can manage the distances in airports, and the new systems they keep bringing in, and the crap from all those officious people making sure you are not dangerous, and the toileting.

But secretly, I know I am a bit phobic of crowds. My eyesight is not all that good since five years ago when I got whacked in the eye by some stupid, chronically angry, overhung woman brown belt trying to prove something during a Karate grading. And with balance problems from TM, I need to avoid people. If I was sensible and gave in and used a wheelchair everyone would smile benignly, pat me on the head, and walk around me. But when they don’t know you have been paralysed, they barge into you just like they would anyone else – or at least they play brinkmanship, leaving their swerve till the last minute – all of which makes me anxious.

And then there are all the memories of what I used to be able to do, and the process of coming to terms with becoming totally paralysed from the chest down. OK, I know I have made a reasonably good recovery, and there are others far worse off, but I still have flashbacks, and the occasional nightmare (as if every day is not a chronic nightmare).

So, I have recurrent anxiety, mild panic attacks, symptoms of agoraphobia, and post-traumatic stress disorder. So what have I done to help myself? Come on physician, heal thyself...

Managing My Anxiety

I have not really done very much, but yet I have done a lot. OK I will explain...

I am not the kind of psychiatrist who prescribes much. I do not believe all the crap served up to us by pharmaceutical companies whose only motive is the profit motive. I have seen the complex and sometimes dangerous side effects of so many drugs, and I am very very wary. I am seriously averse to providing multiple drugs – simply because so often the side-effects from a mixture of drugs are not known, or are minimised. I have repeatedly had the experience of ‘curing’ back ward psychiatric patients by taking them off all of their drugs, and helping them back into life, home and society. I have repeatedly cured ‘zombie’ children and adolescents by taking them off multiple drugs prescribed by other psychiatrists, and helping them to understand themselves and their families, as well as develop some self-efficacy and future directions.

Don’t get me wrong. One of the prime reasons for being a physician is to help people with pain, and that can be emotional as much as physical.

 But take drugs myself? OK, yes, about 3 times a week I take a couple of paracetamol when my chronic chest pain is unbearable. But anxiolytics, antidepressants.... No!

So what about the ‘done a lot’? OK. I have been very careful with my diet, as discussed in a couple of other blogs. Why use too much coffee if it makes you ‘wired’, stops you sleeping, and gives you an irritable bladder? Why drink alcohol if it makes your neurological problems in your legs three times worse? I have learned to avoid certain foods because they give me wind. I have been very careful to avoid foods that make me constipated. I have reduced quantities of fat and protein in accordance with the MS diet (in the belief there may be some similarities between MS and TM). I get lots of healing sleep. I do as much regular exercise as I can manage, and always take a recovery rest afterwards. I meditate as often as I can – formally (sitting), and informally (goof my mind off while listening to boring lectures). I have been writing down my experiences (like this blog, and my book ‘Taking Charge; a journey of recovery’) which has been immensely helpful in working through problems. I smile at people lots. I maintain an optimism I do not sometimes feel, but which makes me feel more confident. I have avoided stress, and anyone who causes me stress – I don’t need it or them.

I have practiced and practiced mindfulness – being mindful of what I eat, how my body works, how I sleep, what my dreams might mean, what I say to the love of my life, how I treat my staff, what life means. I write 3 Haiku in 5-7-5 format every single day to help me be mindful of old issues that emerge in response to key words.

I am still more tense than I ever used to be. I still get anxious in certain circumstances. I still have old traumatic memories. I am definitely mildly agoraphobic. Well, I accept all of that... and.... I laugh at myself (not hysterically, you understand. I would not want anyone to think I am mad, or know that I have psychiatric problems). LOL

You can read more about the whole catastrophe by purchasing ‘Taking Charge; a journey of recovery’ from http://www.familyconcernpublishing.com.au in paperback or download pdf form. You can also buy the book from Amazon Kindle. Search for ‘Taking Charge; a journey of recovery’ at http://www.amazon.com