Caught in the middle

[Maya23]

I am feeling quite stuck in the middle, between feeling a lack of trust in the doctors, and a lack of trust in any alternative therapies too.

As you know I had a bad reaction to steroids a month ago and was very close to taking my own life. For a long time since I have felt like I survived a kind of near-death experience! Looking back now, I feel that my trust in my GP and Consultant has been eroded by the experience, especially as I talked through my concerns with my GP before I took the steroids -he knows I have a history of depression and anxiety- and yet he still thought I should give them a go. In some ways I'm glad I took them as I would always have wondered if they could help me.. now I know they aren't for me. It still shook my confidence in doctors though. I've now started taking high dose Naproxen 500mg with anti-acid caps to protect the stomach lining. I'm not a great fan of these but I need to take them at the mo as I'm flaring.

As you know I've also been trying out other alternatives of treating lupus, with diet (and I read 'The Lupus Recovery diet' book). I am still gluten free, sugar free, and I'm still mainly dairy free too. I think it's too early to tell whether it's having a positive effect, however as you will know from reading my previous blogs about the diet, I couldn't sustain a strict vegan diet with no butter, eggs or meat .. and no cake! I actually got to the point where I felt on the edge of an eating disorder where I saw all food as 'harmful' and starting wondering if I should give up eating altogether! Luckily I was getting support from my Nutritional Therapist who helped me find a way through to a reasonable diet that was going to help me in the long term. The problem I have now is, she is a big fan of a Dr Natasha Campbell McBride, who developed the 'GAPS' diet, which is very odd; it's about repairing the gut wall by eating lots of meaty soups and stews with lots of saturated fat and fermented foods... and cutting out ALL grains (yes ALL of them!) and potatoes, sweet potatoes and parsnips too. As you can imagine, I'm NOT a fan! In my experience I usually feel worse for eating too much saturated fat. Not only that, she also keeps recommending that I buy more and more expensive supplements and there's no evidence (that I can find anyway) that they will help with lupus.

So I'm caught between taking pills that will hurt my digestion but reduce the inflammation, and a nutritional therapist who's trying to heal my digestion with diet and expensive supplements...Ah!

This is the point where I need to have a rant. Not only is it unfair that we have to suffer the aches and pains and limits to our lives just having lupus, but we have to pay for it again by spending a lot of our disposable income or 'fun money' on prescriptions, and on top of that I feel discriminated against for not being able to eat foods that I'd like to eat like croissants and cream teas, instead I have to pay loads more money for horrible gluten free bread that tastes bad. I feel like a second class citizen.. not entitled to ordinary pleasures. Sometimes all I want to do is sit on the beach in the sunshine and eat an ice cream, but I know that will make me feel ill. Ok, rant over! I'm going on holiday to Cornwall next week and I'm determined to have fun!

[Melinda]

Dryad, i've tried all sorts of gluten free breads and made my own and they are all disgusting except for genius bread which taste more like the real thing. It's a bit expensive but my husband makes his own normal bread so it balances it all out.

I have been quite interested in the gaps diet, mainly for my grandson whose autistic. Unfortunately my daughter doesn't think a diet would help him. But if you don't try it you never know.

Before i had lupus i had ibs and i came to the conclusion that it was the bread i was eating that was causing it. I also recall my late sister who had lupus had an irritable bowel. So did my mother who had ra. So i think there's something in healing the gut.

Have a good holiday in Cornwall, we're off to Bournemouth in september. Take care.

[Maya23 in reply to Melinda]

That's very interesting, thanks for letting me know. I used to get irritable bowel type symptoms and bloating, and since I gave up wheat I stopped getting it. I will try the Genius bread, I've seen it in Sainsburys, their own gluten free bread is rather bland and nutrient poor.

My Nutritional Therapist wrote to me today and recommended I try eating introducing some of the GAPS diet ideas slowly into my diet.. I have to concede that there might be something in the GAPS diet in as far as meat broths (particularly chicken soup) has a long history of being considered a 'healing food' by many cultures. The collagen in the bones can help heal connective tissues, so it sounds worth a try. It can't hurt.

[Looby]

Hi there Dryad - I guess you are loving the fresh air, blue sky and friendly folk in Cornwall right now....... do hope that it gives you the boost you need to feel "alive" again (AND a First Class Citizen!) You know you can let off steam here....and we will be whole-heartedly sympathetic.

Like you - I've lost confidence in the medical profession over the past year or so.... I'm not going to have a rant (my husband gets enough of that!) but just to say that I'm pretty pee'd off with feeling like a zombie most mornings. I've loved what I've seen of the Olympics on the TV - and would have seen a whole lot more if I hadn't been in acute pain and fatigue.

Seeing all the lithe and lovely young people is uplifting to the spirit, but I couldn't help remembering when I too participated in Athletics and Gymnastics, representing my school in County Championships..... that was back in the "Swinging Sixties". Perhaps this is the result of all the wear and tear on the joints and muscles......(?) My Mum sometimes couldn't bear to watch.

Looking forward to our next escape to the coast......do you find that you feel better by the sea?