Sunday, 9 February 2014

Ain't No Cure For The Summertime Blues

Patients For A Moment Blog Carnival this month asks how we patient bloggers are coping with the cold winter.  The person asking is lovely Leslie at Getting Closer to Myself wrote the topic, and she is living in that part of the planet that is reportedly cold at the moment.

As for me, I'm here in Brisbane, about 450km south of the Tropic of Capricorn.  Here, we're in the last month of a long hot summer. I'm having trouble remembering winter. We've had a few record-breaking heatwaves in the past couple of months, and looking at the news, it seems the southern states are all on fire. (There's ten bushfires in Victoria and one in South Australia at the moment. There's been lots more throughout the summer.)

Despite the searing temperatures, this summer has been far less traumatic for me than most.

Normally the summer heat saps my energy and I struggle to even get out of bed. And, to be truthful, that is how I started this summer as well.

This year, however, things changed. This year I said to the world's most awesome landlady, "I think I can afford to get an air conditioner, do you mind if I get one installed in my flat?"

She said she and her husband would get me one.

Summer started miserable, with me seeking shelter in libraries and shopping centers and anywhere else I could avoid the heat. Now, I can stay inside at home through the worst of the day.

Some days have been so bad that the air conditioner has struggled, but most of the time it has made a world of difference. It helped when I learned to turn the air conditioner on before the day got too hot - it's much better at keeping the flat cool than it is at cooling it down after it gets hot. This is my first bearable summer in a very long time.

So despite the horror of summer heat, I'm feeling pretty well, much better than I normally would. That might change when I get my next electricity bill, however. (Next on the agenda: solar power.)

Find how other health bloggers responded to this month's PFAM topic at Getting Closer to Myself.

Is It Working?

Dr K (my rheumatologist) asked me: "How's the sulfasalazine going? Is it helping?"

Is the sulfasalazine working?
"How do I tell?" I asked. "When I'm taking so many drugs, I don't know which one is doing what."

Sulfasalazine is the most recent drug he has given me. It certainly made a difference to start with, but I can't tell if it's still doing anything that the rest of the drugs wouldn't do.

Dr K's solution?

I have to stop taking sulfasalazine for a month. If I get sick, I should start it again and see if it makes a difference.  If I don't get sick, that's one drug I can take out of my cocktail.

Like most drugs for lupus, sulfasalazine was developed to treat something completely different. In this case the completely different thing was Crohn's disease.  Dr K had thought it would help with my gut symptoms as well as my other lupus symptoms. He'd initially suggested that if it worked really well, I might be able to eat gluten and lactose again.

It never worked quite that well.  I still had reflux when I ate or drank anything with lactose, and still had irritable bowel whenever I ate gluten... so that didn't help a lot.  But it had initially seemed to help a bit with the general aches and pains and fatigue.

I've only stopped taking it for a couple of days - so far I haven't really noticed any difference. So maybe the rest of the drugs in my cocktail are enough without it.

But it leaves me with the question - is there any way to know which drugs are working and which are just surplus to need, without taking the risk of stopping a drug that might turn out to be very important indeed? Apparently, Dr K couldn't think of any.

So much of lupus treatment seems to be trial and error, with a treatment that makes a huge difference for one person either not helping or making things worse for another person. It's one of the many frustrations of living with an unpredictable and frustrating disease.

Saturday, 8 February 2014

Fat or Fast

I had my regular visit to the rheumatologist this week.

Dr K works in the city, which means driving to the station, a train to the city, and a 20 minute walk from the station to Dr K's surgery.  (OK, it's probably a five minute walk for most people, but this is me.)

So he immediately noticed that I looked unwell.... I explained I always look unwell after a 20 minute walk, but I persist in believing that little bits of exercise must be good for me, even if I can't go to a gym for a full work-out any more. For once he didn't bother to give me the "with lupus, if you use it you'll lose it" speech.

Instead he gave me the "you need to lose weight" speech. He added a horrible warning this time - my arthritis in my ankles may be from lupus, but unless I lose weight, I'll also have osteo arthritis, which isn't ever going to go into remission.

Now, I'm fully aware that I'm well and truly over my healthy weight. I know it's completely necessary to lose the excess.

I also know that Dr K has me taking prednisone which puts on weight just by existing, but which also gives me an uncontrollable appetite.  Every time I try to diet, I can stick to a program for a couple of days but by the end of the week, the ravenous prednisone appetite gets to the point that there's no way I can possibly suppress it.  Add to that, that Dr K stopped me going to the gym, and absolutely insisted he would not give me enough pain relief to be able to do any strenuous exercise (the "use it and you'll lose it" speech), I'm well and truly sunk.

So here I am stuck, with willpower that's just not strong enough to beat prednisone and a body that can't and won't exercise more than a very slow walk, or a hydrotherapy workout.

The next day, I told my problems to my GP (for those of you overseas, a GP is a General Practitioner, a family doctor).  I asked if there are any weight loss pills that actually work. Her answer was simple - no there aren't.  

I wanted to know, what else I could do (apart from developing a weight loss tablet that doesn't work, advertising it as a miracle drug, and getting rich).

Her answer was to try a different kind of weight loss program. She recommended the book The Fast Diet by Michael Mosely. Dr Mosely looked at scientific evidence for fasting on alternate days providing lots of health benefits - not just weight loss, but reduced inflammation, better blood pressure and cholesterol, and number of other benefits.  He then developed the idea of a fast on two non-consecutive days a week, on the basis that it is easier than alternate days, and people would be more likely to stick to it.

By self-testing, he found he lost weight by sticking to a fast on two non-consecutive days a week, and found that his health improved as well. 

On a fast day, women eat no more than 500 calories (if you're like me and grew up with kilojoules, that's 2100kj), men eat no more than 600 calories (2520kj).

Do I really believe that a fast on two days a week will do everything for me that the alternate day fasting, which scientists actually researched, would do? I'm skeptical. But on the other hand, if on the non-fasting days, I don't eat more than usual to compensate, then in any given week, I have surely eaten at least 5000 to 6000 kj less than I'd normally have eaten. That's a whole day's food less than usual, so I should theoretically lose weight.  And it means I don't have to struggle with maintaining willpower day after day - I just have a "first day of the diet" to deal with - then I go back to eating normally, and then have another "first day of the diet" to deal with.  I always know that I'm only one day away from being able, without guilt, to give in to the craving for chocolate or cake.

So far, I've fasted two days.  I've found it not at all difficult. In fact, I'm starting to wonder if I want to increase it to three days per week during Lent, and to explore some of the spiritual side to the tradition of fasting.

And if I do have a bout of the prednisone hungries on a fast day, all I have to do is nominate it a non-fast day after all, and have another fast day in its place.

Hopefully, this will work. It has to. My ankles are depending on it.


Mosely, Michael. The Fast Diet: Lose Weight Stay Healthy and Live Longer with the Simple Secret of Intermittent Fasting.