For July and August we have invited people living with lupus to share their experiences of changing diet and lifestyle. This month's story comes from Debra who has had a great response thanks to a NHS programme, 'Weight Matters'. Thank you Debra for taking the time to share with us.
I was diagnosed with SLE in August 2014 following several months of being unwell. I've experienced a couple of different medications, including steroids, but it has been a rocky year and even now the medication is experimental. I had blood level issues recently (neutrophils) so I had to stop my medication (mycophenolate) but continued with the steroids which have been reduced to 5mg, which I'm absolutely fine with.
I've not been feeling my best for several months now and I think psychologically this illness was controlling me and I started to understand that I had to accept it and work with it. Once I did this I started to feel more positive and during this time I decided to start the 'Weight Matters' programme, I went along and explained everything about my condition and was provided with a programme and many useful leaflets. I have been on the programme for three weeks and have to say I am feeling so much better, to the point that I'm wondering if I need to go back on my mycophenolate. I am discussing this with my consultant later today and will see what he says but overall I believe that I have benefited from this programme, not sure if it's a coincidence or not but my neutrophils are now back to normal level.
‘Weight Matters’ is a weight programme that you could join absolutely free from the NHS so I called the number and was provided with details. It's a 12 week programme and you attend your nearest centre, details of which are provided to you when you call them. You have weekly sessions where you are weighed/measured etc. but more importantly you are taught a little bit about nutrition and they also cover psychological elements and set you goals, not necessarily based on food but generally in life, to help encourage you on your journey.
For me this programme is about omitting as many processed foods as possible and I have learnt to substitute certain foods with more healthy options. I feel more energetic, more positive and I'm losing a little weight. The goal setting is also helpful; I have two or three and I'm on my way to achieving them. I think this simply helps you feel like you are achieving something which lifts you psychologically. I have joined a Pilates class and am trying Zumba this week to see which one suits me best but it has taken a while to get to this point and this programme has helped me do that. I believe that if you start to take care both nutritionally and physically the psychological element will follow and will help you become positive, which is something we need when living with this illness.
For breakfast I chose yoghurt & fruit, I try to stick to organic yoghurt and always natural. I eat bananas and apples if I'm hungry between meals. For lunch I chose quinoa, which I mix with sun-dried tomatoes and olives. There are alternatives to quinoa such as spelt and there are actually various types of this food that come ready to eat so it’s a bit simpler. Once you find them in the supermarket you find several types. Dinner can be salad, which I love, and I often choose fish (such as prawns, mackerel or salmon), sometimes I have chicken, I have a little olive oil but not too much and sometimes I choose stir-fry for dinner.
I often have a slice of malt loaf after dinner and more fruit if I’m still hungry later in the evening.
You can eat meat and many other foods but it is all controlled by portion size, there is a lot of information provided, too much to list to be honest.
Every week I learn something and I have many leaflets. This week I'm going to ask about anaemia as I’m slightly anaemic and I will no doubt get some tips on foods that might help and how to cook them in various ways.
I was absolutely gob-smacked when during my session last week the nurse I see told me that they are in fear of closing due to lack of response. I was amazed at this as it's a very good programme providing all sorts of information about diet and nutrition and generally providing help. It's also NHS funded meaning it's absolutely free! Anyone can join. The number for this programme is 0800 022 4524, you simply tell them you wish to join and they will give you further details based on where you live.
I've had many hurdles to overcome like most people with this illness, it changes so much I find myself constantly adapting. I work full time so I rest more at weekends; I actually enjoy being at home. I've learnt to enjoy my home and its surroundings for the first time, something I most definitely would have missed as I was always out and about doing something… I do wonder what I was doing now!
I have negotiated with Occupational Health and my company to work at home on Wednesdays as I have a long journey which I find tiring, so I use it as a re-charge day. Like a lot of people I have a stressful job but I now put myself first and worry less about meeting targets. Generally my whole outlook on work has changed and I actually think it has made me more productive!
I plan less in my social life, as I never know how I'm going to feel but that means I'm more spontaneous which has its upside. I do have some events planned which I deal with at the time, if I'm ok I go, if not I don't.
I really enjoy eating out and this can be the most difficult part of the eating plan. However, I don't punish myself that much, I enjoy treats etc. and if I do go to a restaurant I'm careful about what I choose; selecting fish dishes or anything more related to my diet. However, I do allow the odd treat, I think this is important as it is human nature to want something you are denying yourself! I just don't overdo it.
My shopping habits have changed, I buy less processed foods and foods I would have never considered thanks to the knowledge I have gained from the programme. I take my own lunch to work instead of using the canteen and the money I save on the canteen I spend on better products in the supermarket.
I guess to sum up, I have this condition and I have to adapt but what has come out of this is quite incredible. My life has changed but I can honestly say it has been for the better. My life is very different now but I am truly enjoying it and so glad I didn't miss the lifestyle I have now. It has allowed me to think about and take care of myself hence the efforts with the weight programme and various exercises I am trying. In a way I have just let myself 'be' instead of living life in the fast lane and being part of the rat race, I guess I'm just trying to enjoy the simplicities of life – it is wonderful.
If you are interested in learning more about lupus and healthy eating, our booklet can be viewed online or downloaded from lupusuk.org.uk/images/pdf/H...