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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Nutrition & Hydration Week

Author: Gaynor Leech, Founder of L-W-O

I was thrilled to welcome Pernille Henriksen as our guest writer this week between us we tackled Nutrition and Hydration working within the concept of living with lymphoedema.  What really surprised me was how much we were in sync as I was writing this blog Pernille was writing along the same lines. Pernille has primary lymphoedema in her left leg and has lived with this for 25 plus years, she is a passionate advocate for lymphoedema and believes in empowering patients to take better care of their lymphoedema by sharing information, news and research.  As an advocate Pernille supports those of us living with lymphoedema  globally. 

My input was to put the information in to posters for an easy transfer on social media which can also be shared. The research I used for writing this blog and the posters was taken from the NHS website, British Heart Foundation and British Nutrition Foundation, I have provided the links. Thoughts reminisces and interpretations are mine.

How food has changed

I was born a few years after World War 2 ended and I had my own ration card.  Sugar and sweets were rationed until 1953 and I remember my Granddad shouting at my Mum that if I wanted sweets or sugar, I was to have them because they had to do without them for so long.  On a Sunday for tea we had cucumber butties and I was allowed to eat sugar cubes.  Probably the reason now why I never buy the stuff.  A friend of our family was an industrial chemist, five minutes with him talking about sugar you would never touch it either, only when it comes from the fruit we eat.

I often smile to myself when I hear about how we should all eat organic food, my generation was brought up organically all our food was grown, vegetables, fruit for pies, fruit for jam making, fruit to nibble at.  No pesticides. You washed away any dirt or slugs from the cabbages and it all tasted delicious.  None of the polished, evenly sized fruit and vegetables that are in the shops covered in plastic.  Blackberries you went foraging for in hedgerows and would come home with tiny scratches and thorns in your arms and hands, no good for your lymphie limbs. Now my arms, hands and legs must be covered with gloves and sleeves.  You went fishing for your own trout and salmon came out of tin.  If you had a glut of apples or tomatoes, you made chutneys and who remembers growing shallots and tuning them into pickled onions for Christmas.  Left over bread went in a bread and butter pudding, or out for the birds.  Nothing was wasted.  You never ate pork when there was an 'R' in the month because there was no refrigeration so only to be eaten in the summer months.  Your iron levels were boosted by eating red meat or mid-week eating liver and onions with mashed potato. Friday you always had fish.

As a child if I was sick with a poorly tummy, I was given glasses of water, and fed arrowroot biscuits, the theory being it would help with diarrhoea and if I was very lucky, I might get a ginger biscuit all to help calm and soothe my tummy and stop any vomiting.   Also ginger biscuits later proved crucial for morning sickness.  Now I would drink a ginger tea.   As a child we would collect fresh dandelions or nettles all believed to have their own healthy properties collected from the bottom of our garden or the countryside to make tea.  If you were stung by a nettle you rubbed a dock leaf on your wound.  


Food was our medicine


Food was our medicine we were brought up to believe that if you ate a healthy balanced diet, that you wouldn't get sick.  Naive or not you decide? In the winter cod-liver oil, rose-hip syrup where given to me daily by Mum because she believed it was good for my health. Orange juice, baby formula and rose-hip syrup came from the baby clinic.  Olive Oil was for medicinal purposes, it was put in your ears to keep the wax soft, while a tablespoon of brandy was added in baby’s bottle to help with colic and teething. Yes, you are reading this properly.  I am sure wherever you live in the world you will have stories to tell.  As a child you played out in the sun and had lots of vitamin D.  In those days we didn’t understand skin cancer, families like mine wouldn't have heard of lymphoedema, even though with hindsight I often wonder whether my Grandma had it as she had huge legs and they were both heavily bandaged.

My first part time job was in a cake shop at the age of 12, I started with two hours and eventually built up to be allowed to work a full week in the school holidays.  You will find it hard to believe when I tell you cakes and biscuits smell, it’s a horrendous smell, even 50 plus years on I still try and steer clear of the cake aisle in supermarkets.  I read somewhere that when shopping in the supermarket you should only shop in the outer aisles because that's where all the fresh food is, luckily when growing up if our family and extended family didn't grow our own food then we had plenty of greengrocers.

When I married, we grew our own food, if we hadn’t, we wouldn’t have been able to eat.  Simple.  Food was seasonal, none of the luxuries we take for granted now where we can buy fruit and vegetables all year round. I learnt to bake, cook and preserve food. I was fortunate that I only had to work part time for those little extras like a holiday.  We certainly didn’t have the pressures that young families are under now, although we did have our own worries, as all generations do.

Then there was four years living in Cape Town in the 1980’s, all that lovely fresh fruit and vegetables. You think? All the best stuff was exported to places like the UK.  However, it did introduce me to butternut squash and sweet potatoes and on a cold winters evening there is nothing nicer than homemade soup with these two vegetables, spiced up with whatever herbs or spices I have at hand.  Other foods such as Biltong, Bobotie, Boerewors, Yellow Rice, lots of spices which today I take for granted.  Melon especially watermelons you would buy off the side of the road, take them home and keep them in the fridge for 24 hours before using them.  Cape Town was also the place where I learnt about lots of other cultures, homeopathy and vegetarianism, sweetcorn fritters, green bean salad, yummy and garlic was added to cooking to ward off infections.

Looking back, coffee was for elevenses, and served with hot milk, not every day more of a treat, the kettle was always on for a cup of tea and drinking water came from the tap. We had three meals a day, breakfast, dinner and tea, supper was a luxury that didn't happen very often.  Now that we are retired, I can eat the same way with dinner being in the middle of the day, whether it was because I was brought up this way, or not, it does suit my overall health, it does keep my sugar levels stable and helps me to maintain my weight. The big difference is that being retired is that we eat when we need to, no longer do we have fixed meal times.

Take a look at the Eatwell Guide on the NHS website




There is no specific diet for Lymphoedema


Portion Control

It is so important to control what I eat, not only for my lymphoedema but for all the other niggles I have.  In the past I must have tried virtually every fad diet going. Portion control works for me and it is my personal choice. I lost four and half stone over four and half years, not only has this method helped me maintain my weight it has stopped the cycle of fluctuations in my weight. You only have to look at the poster below to see how plate sizes have changed between the 1950’s and now.  If I am on the go, I know that a portion fits into the palm of my hand.  In my younger days it was very difficult not to eat all that was on my plate as I had been brought up in a generation that food wasn't to be wasted at any cost.  At home it is never a problem because I am guided by the plate size I use, finding smaller dinner plates was difficult but I did finally find some.  Eating out can be a nightmare and we do this probably about twice a week.  Everything seems to come with chips, and this is where I will probably order a vegetarian meal because they tend to be smaller. My worst nightmare is being invited out for a meal where there is a set three course menu, which is way beyond my tummy's capabilities. Secondly when eating out meals that are booked for after 7 o'clock not only upset my tummy they send my sugar levels into the next stratosphere.  There is never a quick fix, there is no specific diet for lymphoedema, and it has taken a lifetime of learning, to find something that works for me.   I am lucky that I was taught the value of food and how it can have medicinal purposes, even if there is no scientific proof, people are entitled to their own beliefs and to make personal choices.  Like everything in life, you take the knowledge handed down, look to improve on it, be open to new ideas and discard what isn't good for you.  The human body is a marvellous creation, in my case it will tell me when something is wrong, it has taught me to trust my instincts which helps me make personal choices.

Portion Control British Heart Foundation





We know that if you are feeling thirsty you are already on your way to being dehydrated.  Our L-W-O members often tell me they do not like drinking water often admitting they don't drink enough.  So Pernille and I looked at the alternatives, we know caffeinated drinks are not good for lymphoedema and cause swelling to get worse.  Drinking water is essential for lymphoedema as the poster demonstrates.  I like my water ice cold, a throw back from the days of living in Cape Town. Friends of mine like to drink their water hot without anything being added like a tea bag or coffee. I can tell our members that coffee, carbonated drinks anything high in caffeine or alcohol is not good for the lymphatic system and increases swelling. The reply that often comes back is that they have drunk coffee all their lives and they are not stopping now.  My point is that as much as we try to inform our members, old habits take a lot of breaking especially for those newly diagnosed who can't always take in the lifestyle changes they may need to


British Nutrition Foundation


No Vitamins, Herbs or Food Supplements have been proven to work for reducing swelling for lymphoedema


Personal Choice

Our members over the last five years have just about discussed every diet, there is like 5.2 diet, Low Carb, Atkins, Paleo, Slimming World, Weight Watchers, Rosemary Conley, Sugar Free, The Rad diet and now the Keto diet is the one everyone is talking about.  The search to control and maintain their weight and heavy limbs goes beyond anything we can provide.  If you are a member of any of the other lymphoedema support groups either in the UK or globally you will see the same questions from group members.  We are not medical, we are not scientific, but members will always search for an answer that is right for them, we listen, and we can tell them why it is necessary for a healthy balanced diet and maintaining their weight, but they will make their own personal choices.

I get very frustrated when we get told this isn’t good for you and that doesn’t work.  In whose opinion?  Information coming from government is often confusing, one-week one food is good for you the next week it isn’t.  Even I can make a comprehensive argument why we should drink gin because it is high in juniper berries and all the beneficial health properties the berries have. Please remember alcohol is not good for lymphoedema.

We must not take away personal choice from our members, and what works for one does not necessarily work for someone else.  I personally would rather have a cup of peppermint tea for tummy problems than a handful of antacids and certainly wouldn’t be eating arrowroot and ginger biscuits.  If my kidneys feel off, I would rather drink Cranberry juice for a week that take tablets, unless I am deemed to have an infection.  For me a banana a day keeps my leg cramps away, if I stop eating a banana for a week then the leg cramps return.  Beetroot is high in fibre and half soluble and half insoluble.  Do I eat beetroot for those reasons?  No. I eat beetroot because I like it, sometimes putting it through the juicer and having a drink. For me crunchy vegetables are preferable to a bag of crisps. Chamomile tea going to bed is by far more relaxing for me than a glass of alcohol and I don’t wake with a muzzy head. These are my personal choices.

Although I am fortunate enough not to suffer with headaches there is one exception and that’s when I eat chocolate.  So, for me if I need to snack it is far better to reach for some fruit or nuts or seeds that not only fill me up quickly, are less addictive and I know they keep my sugar levels stable.

Celery, turmeric, curcumin, glucosamine, coconut oil, aloe vera either as a gel or drink are a few of the alternatives that get talked about regularly and there is nothing wrong with herbs and spices being used to flavour foods in cooking.   My personal belief is that we should get all the vitamins and minerals from the food we eat, eliminating the need to take them in tablet form.

Living with a long-term illness is tough but many of us know what foods and drink cause a reaction and make our condition worse, I can give out the facts, I can suggest you use common sense, but I cannot take away your personal choice.

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