I was diagnosed with lupus in 1988 but looking back at some of the things that happened in the years prior to that, it would seem that it’s been around for most of my life. After a couple of years during which I was quite poorly and felt like a walking toothache, our super team at the Louise Coote Lupus Unit sorted me out and got the lupus under control.
As other lupus patients will agree, if you are ticking along reasonably well you don’t rock the boat if you can help it. I’m very careful about what I put into my body, so when I was shopping in a health food store a couple of years ago and spied a herbal detox remedy, I checked the box for any warnings.
Having satisfied myself that there was nothing to indicate that the remedy should not be taken by people on prescribed medication, I thought I’d try it in the hope that it might alleviate some of the side effects of my medication, eg the fluid retention and puffiness.I followed the instructions and took the remedy - which tasted very much how you’d imagine horse urine (the polite version) to taste. I didn’t feel any different than usual and, fortunately for me, the timing of this coincided with my routine check up at the lupus clinic.
One of the lupus symptoms I have is a low platelet count, which is controlled by medication. The platelets’ job is to clot the blood and a ‘normal’ person should have a count within the parameters of 150–350 or thereabouts. At that time mine had been running somewhere between 40–70; the point at which I need to adjust my medication is if the count goes below 20.
On the day of my appointment, the blood test results showed that my platelet count had dropped to 16. I’d had no prior indication of this as I don’t bleed or bruise when my platelets drop and therefore it could have had potentially serious consequences for me if I had cut myself, banged my head, or had a prang in the car etc. This may have been just a coincidence but the only thing I could think of that I had done differently was to take the herbal detox remedy.
Having been warned by Dr D’Cruz that it really was not a good idea to take herbal remedies as they can have an adverse affect when taken with prescribed medication, my dosage was increased for a while and my platelets returned to a safe level. I’m ticking along quite well now apart from the occasional hiccup which we all have from time to time.
I took part in a Research Diet Study for lupus patients run by Dr Yeo. I followed a Healthy Eating Plan for six weeks. The plan is made up of 7–8 portions of fruit and vegetables, 3 portions of milk and dairy foods, 8 portions of bread, other cereals and potatoes, 2–3 portions of meat, fish and alternatives, 2 portions of fatty foods and 1 occasional sugary food per day. I think I presented a bit of a challenge as I’m vegetarian and avoid wheat and cows milk (I use soya or goats milk). Initially I was horrified at the list of food I had to consume per day but this was not a problem as I soon got to grips with the portion sizes given in the plan.
For me the best way to go about it was to write down a plan of my meals the day before and I divided them into breakfast, mid-morning, lunch and dinner. During the course of the study we found that whereas I thought that certain foods upset me, I am in fact sensitive to the content of some mineral waters I’d been drinking with my meals and by process of elimination have found a couple of brands that suit me. Also, we discovered that the high fibre content in the peel of some fruit and vegetables was the cause of some discomfort I’d been having after eating. I now peel everything – problem solved. At the end of the six weeks I felt really well with more energy and had even lost a bit of weight. I have continued with the eating plan as it seems to work for me and is now a way of life. It’s easy to follow because you soon get into the routine of what you should be eating/portion size etc and it can be adapted to suit if you go out to eat.
With my increased energy, after first checking with my GP, I joined a Fitness/Leisure Club, I was given a personal fitness assessment by my instructor, who designed a personal program for my gym workout which includes a warm up, cardiovascular training, strength program and cool down.
My workout is geared to what I can manage and is regularly reviewed and adjusted if I’m having any problems. Karl has given me lots of help and advice and tells me to listen to my body and if I’m not feeling that good to just walk through my program or continue with yoga and swimming as far as possible. It does work and I’ve felt better afterwards. When I joined the fitness club I could just about do a width of the pool - all on one breath without getting my face wet. This has increased to seventeen lengths and I’ve set myself a goal of twenty. It does help that the pool is all the same depth so I’m not worried about drowning myself. Also, I now breathe while I swim (but still don’t get my face wet). I also enjoy aqua aerobics sessions, which are a jolly good workout without putting too much strain on the body.
I’ve been doing hatha yoga which has helped with my flexibility and mobility; after a class my body always feels very relaxed as if I’ve had a massage. The instructor, Karen Goss has built up a file on me and makes a note of which positions I find most comfortable. A pattern is emerging and it would seem that I’m at my best when I’m upside down. Karen is carefully building my confidence and coaching me towards doing a shoulder stand and when I’ve achieved that – a head stand! I hope what I’ve written is helpful,
I count myself as one of the lucky ones as I’m able to work around the lupus and enjoy life – keep well and best wishes to all.