Saturday, May 7, 2011

A Respite Phase?

For the past 6 weeks or so I have been feeling pretty good, despite being “a magnet for colds and flu”, according to my GP, because some of my immune system markers, the immunoglobulin subclasses Ig1 and Ig2 are still very low. Ig3 and Ig4 are somewhat low, but within the range, so they’re not a worry.

My cortisol levels are still alarmingly low at almost a quarter of the expected baseline level. The adrenal glands and pituitary gland are still not functioning properly. So you would expect me to be feeling slow in the mornings, and with the low immune system, liable to catch whatever is going around in the way of germs.

Not so! I’ve been remarkably well. So well that when I visited friends and family in Melbourne and Tasmania, I sensed a little disappointment that I didn’t look like I was at death’s door, as some had expected. I assured them that I HAD been at death’s door, especially when I’d had to rush to the emergency room during February’s heatwave, when a combination of heat exhaustion and crashing nausea from migraines made me very sick indeed.

But I’ve been delighted to be feeling so bright and energetic, as it meant I could finally take my brief interstate holiday, and enjoy catching up with my son and daughter-outlaw and my three gorgeous grand-daughters, other relatives and many friends, as well as the perfect autumn weather. I always feel much better when the sun is shining! I came back exhausted from so much pleasurable activity, and was surprised to find my platelets had doubled from 45 to 93, quite high for me. On the strength of that bounce, and my continuing good health, we reduced my steroids by .5mg to 3.5mg daily.

Cordyceps works – at least for me

I’ve been taking the Chinese fungal preparation, cordyceps sinensis at the rate of two 500mg tablets each morning, for the past four months. It’s been clear for at least two months that this is assisting me to maintain good energy levels despite my poorly functioning adrenals and pituitary gland, and it may also be improving my immune function.

Whether I will need to continue taking cordyceps after I’m finally weaned off the prednisone is not yet clear, but I’m happy to keep taking it, as I’ve had no adverse reactions to it, and some definitely positive effects. Without it, I think I would be far less chirpy than I am!

Weaning the prednisone – what’s ahead?

Not surprisingly, I’ve been really enjoying this sense of well-being, and of feeling that I’m almost ‘back to normal’. But what is ‘normal’ for me in this new situation of learning to live with chronic illness? Both my GP and my psychologist have warned me I will likely have setbacks – that I won’t always feel as good as I do now.

The psych gave me some very good advice, which I’m applying by writing this blog. He suggested I write a note to myself – from my well self to my unwell self. It’s to be read when I hit a setback, reminding myself that I’ve been ill before – several times during this past 18 months – and that I’ve got better, and even bounced back. That no phase is permanent – nothing in life is permanent, but just as there will be bad times with my health, so there will be good times again. The whole series of posts in this irregular blog will show me that!

Even now, in dropping the pred down to 3.5mg, I’ve had a little bit of an adverse reaction. Not immediately, but after a couple of days. I started to feel a touch shaky in the mornings, slower to get started, and at night, brief palpitations on going to bed. For two days in a row I had very little energy, and spent the afternoon of one day, and the whole of the next reading and knitting. Thank goodness for beautiful autumn sunshine – I was able to ‘convalesce’ in a comfy chair on my balcony soaking up the rays, surrounded by my plants.

On the bright side

The autumn sunshine finally induced my nasturtiums to bloom, so there were bright yellow and orange flowers to greet me when I came back from my holiday. All the herbs on my balcony are doing well – I can pick rocket, chives and parsley every day for a bit of fresh green life, the oregano and everlasting basil ares still going strong and the rosemary bush has started to show tiny mauve flowers. What a joy even a tiny garden can be!