Transverse Myelitis and Exhaustion

I recently got a new iPhone, and it comes with one of those health applications (apps).  Wow, I can record my sleep (averaging 9 hours + a night), every time I crawl upstairs (not often), my weight (decreasing), my blood pressure (116/78 - absolutely normal for someone my age), my pulse rate (varying between 67 and 83 depending on my activity levels) and walking. I was advised by a colleague to consider an app called ‘Pacer’ – a little more user friendly and links automatically with the iPhone app.

OK, here is the fun. I have always been competitive. So, Pacer measures every step I take, and now I carry my phone with me obsessively. I would not want to miss a step! It provides this nice little diagram showing my steps. The ultimate is a classic 10,000 a day – yeah, right. Well I manage somewhere between 400 and 2200, and this nasty little app calls me ‘Sedentary’. What a bloody cheek; don’t you know I am partially paralysed, and had to fight my way back from being totally paralysed from the chest down. And of course it doesn’t. So every day I get called ‘sedentary’... Grrr...

I decided to do something about it. First, I have to say I work part time, two days a week, in my profession as a psychiatrist (very sedentary). I drive there in the morning, but need my life partner to be there to drive me home each day. During work, I am mobile between patients going to the waiting room, the toilet or the kitchen and, by the end of the day, have usually clocked up about 1500 steps. So on the days I am home I have tried to emulate that. Well, to tell the truth, I have tried to surpass myself. I have begun to use a stick to walk, just to manage my balance. So, we began with a gentle walk to the end of the road and back again (800 paces or so); then we went the other direction and back (about 1000 paces), and on the best day I managed 1400 paces in the walk and another 800 paces fiddling about at home – total 2200 paces. Woo hoo...!! The bloody app still records me as ‘sedentary’. No sympathy. Grrr...

Now here’s the thing. At the end of a standard work day (about 4pm), I am exhausted. I need to stop, sit, veg out or snooze. I am really tired. We go to bed at 9pm, and often sleep 12 hours on those nights. After 2 days we have a whole day of vegging out. I am so physically tired, so fatigued, I really can’t do much more than sit about, read the papers, watch some sport on Television or, occasionally, do some writing.

Every thing I read says that increasing exercise will begin to combat the tiredness, begin to rebuild muscles, stop my slow annual deterioration, and keep me healthy. Mmmm... I revelled in my achievement of walking 2200 paces in a day. But I cannot exercise if I am exhausted. It is not that I have really pushed myself to exercise past what I can do. I do know about doing that, having done Karate for 22 years, and having run a full marathon in 1987. I am not really pushing myself. There are just days when I am exhausted.

So, yesterday was two days past the work days. I promised myself we would go for a short walk at the end of the day once the temperature begins to drop a bit. Well, I just could not do it. I was too tired. That made me feel a bit depressed. But I just had to accept my limitation.

Could there be something else wrong? Well, I eat well (married to a dietitian who works hard to ensure I get the nutrients I need). I am taking daily supplements to ensure that my vitamin levels surpass what I might use up – within reason). I am not injured as such. My leg and core muscles are much weaker than they used to be, but they do respond when needed. Could I be depressed? Of course I get depressed about things I cannot manage, but I am not chronically miserable, I don’t beat myself up or hate myself. I am optimistic within my limitations. As noted, my sleep and appetite are fine. No I am not depressed. Just bloody irritable at being referred to by some idiotic app as ‘sedentary’. Ah well.

I will try a walk this afternoon when the outside temperature drops below 30 degrees. Not too far. With Jan, and with my trusty stick. Then I can flake out in front of the TV and watch the golf without feeling guilty.

I have written about exhaustion in some chapters of my book (Taking Charge: a journey of recovery). You can also find out more about fatigue on one of the Multiple Sclerosis sites – information that mirrors what happens in Transverse Myelitis.

Does anyone know what causes the fatigue? No, not really. Several authorities have described it beautifully. But no-one knows enough to really find a cure, or at least find some solutions that might be better than the usual platitudes.

Sorry guys.

Just do what you can each day...

Oh, and don’t feel guilty.