I came across this animation which does a great job of explaining why microbes are important to our health.
Posted in science
Happy New Year. I was hoping to get back to regular blog posting as soon as the New Year celebrations were over. However, I’ve realised that until the kids are back at school I’m unlikely to find any time to write.
In the meantime; I have a treat for you: eat4me’s very first guest post. This piece was written by fellow ME sufferer Louise Lees as part of a creative writing course. I think it brilliantly describes the experience of having ME/CFS. Louise wrote this during a relapse, however her recovery is progressing well and she will soon be starting a phased return to work.
Now, over to Louise.
Finding Out
She’s sorry but she’s just too busy. Too busy to come. Again. She never used to be too busy. When I was well.
The familiar hallmarks of my return to bed are back. Laundry spews out of the basket and toys taunt me from the skirting boards; Teddy’s sideways gaze meets mine, as though we both know it’s going to be a while until he gets back to the toy box. The kids have cabin fever and dark shadows have appeared under John’s eyes again. Everything feels too hard.
I’m told she talks about helping, head on one side, hands clasped. Earnest expression fixed. What a terrible shame it all is. Perhaps it makes her feel she hasn’t turned away.
The Consultant told us we’d find out who our friends are. Freshly diagnosed, it almost sounded a good thing. Resolute. Empowering. The kind of thing that might turn out to be a blessing. It turns out, it just hurts. It hurts like when you’re punched in the stomach, bent over gasping for air. Physical and visceral. Another loss slung on top of my income, my freedom and the other people who have melted away.
But finding out who your friends are means that we’ve discovered Gems. Wonderful, sparkling, dazzling gems hidden by humdrum. Folk who wordlessly picked up the kids, fed them, held them and let them talk. Friends who brought meals, pegged out the washing and dragged my husband out for a beer. People who brought stories of sunshine and warmth. And left before I was exhausted. And promised to come back soon. And did. Those who just held my hand.
In the sea storm of illness, the Gems crafted my family a raft. They joined hands and hauled each of us from the snarling sea. Their calm embrace surrounded us with warmth and light. Backs bent to take the worst of the weather, they guided us into calmer waters until smiles came back to my children’s faces and the colour returned to my cheeks.
The Gems are the glue that mends my broken body. Their kindness fills my heart with the strength to press out the hurt of those who’ve gone. The Gems let me believe that this is not my forever, when I lie in my bed alone.
Posted in Uncategorized
I’m sorry there hasn’t been much blog activity lately. The good news is this isn’t because of a relapse, but because life is so busy. I am working on my pages about meditation, but I’m finding my time for writing is seriously eroded by all the Christmas activities and shopping, so they’re not ready yet.
I thought it might be useful to compare where I was last December to where I am this December, particularly for anyone struggling at the moment.
After improving over the summer of 2012 I declined as the weather got colder and the days shorter. Last December I caught Bronchitis, and this caused me to relapse to housebound for several weeks and bed bound some of the time.
A particular low point was when my daughter was crying in her room for me to help her and I could not get out of bed to go and comfort her, let alone help her. I can remember sobbing to my husband that evening that I couldn’t cope and I needed more help. I can’t quite remember how we muddled through that time. I have a brilliant set of friends who took my children to and from school and various activities and cooked for us every Friday. As usual my wonderful husband somehow held everything together – I think he must have come home from work early quite a lot. He did all the Christmas shopping, cooked the Christmas dinner as well as the myriad of household chores he has been responsible for since my illness.
On Christmas day I managed to get out of bed for two short periods to watch my kids open their presents, and then again later for dinner. The rest of the day was spent in my bed, alone. I found the noise and energy of the family too much to tolerate for long.
As I recovered from Bronchitis I made a determined effort to increase my activity slowly. By February half term I was doing some school journeys on my electric bike, and I slowly increased this until I was doing all of them. Since Easter 2013 I have reasonably consistently managed the school run, and now I can’t remember the last time I’ve had to call a friend and ask them to bring my kids home.
This December is a huge contrast to last year. Here’s a list of some of the activities I’m involved in, but I’ve probably forgotten some:
Between all these activities I’m still making sure I eat the right foods, as well as do regular meditation and yoga. Now you can probably see why the blogging has had to take a back seat!
I hope that if you are going through a bad time at the moment, this post boosts your belief that things can improve.
I am so grateful and appreciative of everything I am able to do, even the mundane tasks like arranging roof repairs. ME/CFS shrinks your life to a very small core. As I recover and my life expands I truly appreciate every extra thing I can do.
Posted in my experience
Of this our true individual life, our present life is a glimpse, a fragment, a hint, and in its best moments a visible beginning.
Josiah Royce
It’s coming up to the two year anniversary of the start of my illness, and I’ve been reflecting on the pattern of my recovery. I’ve realised that my improvements are usually very gradual and tend to be a step forwards, then a step back for a whle, then a step forwards again. Often I step forwards and back several times, gradually maintaining the step forward for longer each time.
My mum recently reminded me how weak I was in the early days of my illness, when just walking to the kitchen and eating a meal that was put in front of me used all my energy, and I had to spend nearly all my time resting. I have come a long way since then. Every so often on a good day I will manage to do something I’ve not managed since I’ve been ill. Here are a few examples of my firsts, but this list could be much longer.
All these are things I first tried on a good day, and was thrilled that I managed them. I wasn’t immediately able to repeat them, but it gave me a glimpse of what was possible and something to aim for. It took time, sometimes months, before they became things I could do most days, and I still have bad days when all of these things are too much.
Thankfully now the bad days are much less, the good days are more frequent and I am able to do much more on the good days.
I look forward to more glimpses into the future. Recent glimpses that I’m hoping I’ll be able to repeat soon include:
What glimpses of improvements have you seen?
Posted in my experience
This is a list of symptoms for Non-Coeliac Gluten Sensitivity (NCGS) source. There is a lot of overlap with CFS/ME symptoms, so If, like me, you read this list and identify with several symptoms then perhaps it’s time to try cutting out gluten for a few weeks and see if things improve.
Gluten is a protein found in Wheat, Barley and Rye. It is made up of two main groups of protein glutenins and gliadins.
There are three different types of reaction to wheat proteins; Wheat Allergy, Coeliac Disease and Non-Coeliac Gluten Sensitivity (NCGS).
More detail on the differences between these three types of reaction to wheat/gluten can be found in this paper if you’re interested. In all three conditions the immune system is activated, but in different ways.
There are tests available for Wheat Allergy and Coeliac Disease, although it’s possible to get false negatives in Coeliac Disease diagnosis. There is currently no test that can diagnose NCGS. Therefore it will not have been excluded as part of your diagnosis of CFS/ME.
Digestion of Wheat Proteins happens in two stages in healthy individuals:
1. Stomach – Digestive juices produced by the stomach wall split the proteins into peptides. These peptides move to the small intestine for the second stage of the process.
2. Small Intestine –In the small intestine they are subjected to pancreatic juices and then reach the intestinal wall where they are broken down by enzymes in the gut lining. Even in a healthy gut these peptides are resistant to digestion.
With damaged gut flora the second stage of the digestion process does not happen, as a result the peptides get absorbed into the body and cause problems: in particular, problems with brain function and the immune system. A damaged gut is one of the characteristics of Coeliac Disease, and can also be present, but usually to a lesser extent in NCGS.
The simple answer is Yes. The sources I have read here and here agree that NCGS can occur when there is no increase in intestinal permeability. It is an immune reaction.
It is possible to have Coeliac Disease or NCGS and be unaware, because the reaction to eating gluten is sometimes delayed by several hours or days. Given that most people eat gluten containing foods several times a day the best way to see if you react to gluten is to remove it from your diet completely for 2 weeks and see if you notice a difference.
I know first hand how daunting it is to make a major change in your diet when you are suffering from CFS/ME. I explain in this post how our family coped with changing to a gluten free diet for first my daughter and then me.
There is plenty of clear evidence that NCGS does exist, but this does not seem to be widely known by many doctors. If you want advice from your doctor about whether you should try a gluten free diet I suggest you first question them on their knowledge of NCGS. If they are not aware that the condition exists and that there is medical evidence to support this, they are not in a position to give you advice about going gluten free.
Please note that I have no medical training and my recommendation in this post is based on the reading I have done and my own experience of following a gluten free diet.
Posted in science, unhelpful foods
I’ve been struggling for the last week. I don’t know why; perhaps it’s the change in the weather, perhaps I’m fighting off an illness. All I know for sure is I have less energy than usual, and the everyday tasks that I’ve been gradually getting more successful at managing are once again too much for me.
So I’m writing this post as much for myself as for anyone else who’s also struggling. Here’s what I know I should be doing to get back on track.
So how am I doing at the above list?
Sometimes it’s necessary to take a step back on the road to recovery. However, I know I’m not back at square one. I have a really good understanding of my illness and what to do to feel better. I just need to be extra diligent at doing all these little actions over the next few days.
To anyone else struggling at the moment. Remember, it won’t last forever, things will improve. A book that really helped me last year was Things Get Better by Katy Piper. If you’re struggling to cope with everything I highly recommend it.
Posted in my experience, positive activities
This post has been encouraged by several people who think they may benefit from going gluten free, but are overwhelmed by the idea of doing it.
I am planning another post about the technicalities of what gluten does in our bodies, this post is going to focus on how we changed my daughter’s, and later, my diet.
Why Gluten Free?
Our journey into the world of the gluten free diet began after a test, via our nutritionist, in Spring 2012 revealed my daughter was gluten intolerant. In some ways this was a relief. She has had health problems for years, and numerous doctors, including several gastroenterologists, had failed to help her. She had had a blood test for coeliac disease in 2010, but this was negative, and there was no mention of gluten intolerance being possible if it was not coeliac disease. I understand that non-coeliac gluten intolerance/sensitivity is only now being accepted by medical professionals.
I was still very weak in spring 2012, so the details of how I coped with my daughter becoming gluten free are hazy. I had only just started attempting to do weekly on line grocery shopping, and found it incredibly draining. I was given a list from our nutrtionist of all the foods that may contain gluten, there is a similar list available as a download from the coeliac uk webpage . The obvious foods like bread and pasta didn’t phase me, I knew I could buy gluten free equivalents. It was other stuff that I found hard. For example many, many processed foods contain gluten. The answer here is to cook your own food from scratch, but I was too ill to do that. For the first few weeks, as I was shopping, every food label had to be checked . I soon got to know which products were “safe” and which to delete from my weekly shop. On-line shopping made things slightly easier, because I was able to look at labels from the comfort of my sofa, and do a search for “gluten free …….” and see what came up. Here are some examples of foods I was shocked to find contained gluten:
In addition, at this time we were still reliant on other people cooking meals for us. My friends rose to the challenge of cooking gluten free meals, but I’m sure there were occasions where meals inadvertently contained a small amount of gluten (e.g. from stock cubes). Despite being told we needed to eliminate gluten 100% I just accepted we were doing the best we could, and was honest with our nutritionist about our progress. My mum has struggled with remembering my daughter needs gluten free food, but now, after a year and a few mistakes along the way, she seems to have a good grasp and tries really hard to cater for us.
One of the hardest things to change was packed lunches. My husband was (and still is) making all the packed lunches and I found it incredibly difficult to find gluten free lunches that didn’t require lots of preparation, that he was willing to prepare. Our nutritionist sent us a list of ideas for “easy” packed lunches, but these were still too much for him to cope with, and I was incapable of adding extra cooking activity into my day. Fortunately I found some gluten free falafels and they became the staple gluten free lunch when we didn’t have other ideas; my daughter still has them regularly in her lunch box. This year, with my improving health my daughter and I have written a list of ideas for her lunches to encourage variation. We have found the Lunchbox Doctor website an excellent source of ideas, although it is not specifically gluten free.
I met with the school cook and found that the school could provide gluten free lunches on some, but not all days. When we first began this gluten free journey the school had an excellent cook and she told me which meals she could adapt and which she couldn’t. Since the school could not supply gluten free sausages, I arranged to supply sausages for her to cook. This meant my daughter was able to have school lunches on more days, and took the pressure of my husband to produce packed lunches. Unfortunately that cook left and the new one produced food that was so unappealing my children gradually refused to eat any school meals (the school is going to change catering suppliers to improve the situation).
Occasionally we eat out at restaurants. We haven’t found this too much of a problem, the key is to select a restaurant that either has gluten free options, or cooks real food. A lot of the chain italian/pizza restaurants now offer gluten free alternatives. If we go to our local indian restaurant my daughter orders tandoori chicken and rice. Carvery restaurants are a good option, because nearly everything apart from the stuffing and yorkshire pudding is gluten free, so there is plenty to choose from. We have always found restaurant staff happy to adapt food. We did once go to a restaurant where there were no gluten free options that my daughter liked. The chef happily made her an omelette even though this was not on the menu. It can help to phone up before hand and discuss what gluten free options can be provided.
My daughter loves baking. She was pleased to discover that almost any baking recipe can be made gluten free by substituting gluten free flour for ordinary flour. You also need to check that your baking powder is gluten free; some brands do contain gluten.
My experience of eating gluten free food began gradually. Although my foods to eat less of list included grains, I had not had a test which showed I reacted to gluten of wheat. My appointments with my nutritionist initially had to be very short, because I would tire quickly and my brain fog would make continuing the appointment impossible. Sometimes we would break the appointment into 2 sections so I could go and rest in the middle. Perhaps if I had been more capable we would have discussed gluten in more detail – perhaps we did and I don’t remember (the joys of brain fog!). I began to have gluten free bread and pasta, but I didn’t totally avoid gluten, and on the occasions where I did eat gluten I didn’t notice any digestive problems. I can’t remember when I decided to get serious about completely avoiding gluten myself, but I think it was spring 2013. As my health has improved my ability and commitment to change my diet has increased. At the moment I am gluten free, because I am wheat, oat, rye, barley free. I am focussing on eating more vegetables and avoiding grains (except small portions of rice and quinoa). I have found if I pile my plate high with vegetables I do not miss the grains. My reasons for avoiding gluten are:
Many of the gluten free foods in the “free from” aisles at the supermarket are gluten free equivalents of unhealthy, processed foods. Gluten free biscuits and cakes will still be full of sugar and unhealthy fats. They should not be consumed regularly if you are trying to improve your health. However, I have found them useful when we are invited to social gatherings where everyone else is eating cake, and my daughter would feel deprived if she didn’t have gluten free treats.
I hope our experience reassures anyone thinking of becoming gluten free that it’s possible to do. The initial change takes some effort, but once you have made the change you get into a routine and it becomes much easier.
* if you’re trying to recover from ME I would advise minimising/avoiding processed foods like crisps oven chips and ice-cream.
Posted in my experience, unhelpful foods
This post is dedicated to my friend Ang who is making a real effort to eat healthily and has found porridge and IBS do not mix. Oats, and most other grains, are included in my foods to eat less of list, but there’s plenty of other great foods to eat for breakfast.
This is my favourite breakfast at the moment. I don’t have it every day, because I’ve been advised by my nutritionist to ensure I eat a variety of different foods.
Banana Protein Pancakes with Berries and Yoghurt
Recipe
Ingredients
Method
Mash the banana in a bowl, add the egg and protein powder and mix together with a fork to form a lumpy batter.
Heat a little coconut oil in a frying pan. Add spoonfuls of the pancake mix to the pan to make approx 6 mini pancakes. Cook on medium heat. Turn when bubbles form on the top of each pancake and the mixture is no longer liquid.
Serve with defrosted berries and yoghurt.
* I use home made yoghurt which has been fermented for 24 hours. If you have a problem with dairy try goat’s or sheep’s milk yoghurt.
I’ve just been made aware of this amazing TED talk.
I highly recommend you sit somewhere comfy for 17 minutes and watch it. What this lady has achieved by changing her diet is inspiring.
If you feel like reaching for a biscuit, cake or bread roll, watch this video first.
Posted in helpful foods, science
I explained what happens in a healthy gut and the problems that occur in our bodies when our gut is damaged. What causes our gut to go from healthy to damaged? Unsurprisingly, it’s not just one factor.
Antibiotics
We’ve probably all been prescribed antibiotics at various times in our life. We are also exposed to them through food. Animals, poultry and farmed fish are routinely given antibiotics so our meat, milk, eggs etc. provide a constant supply of antibiotics and antibiotic resistant bacteria. A lot of fruit and vegetables are also sprayed with antibiotics. As well as having a devastating effect on beneficial bacteria in our body antibiotics also:
Other Drugs
Most drugs, especially those used for long periods of time have a detrimental effect on gut flora.
Diet
What we eat has a direct effect on the composition of the gut flora. This will be addressed further in future posts.
Disease
Stress
Short term stress has a detrimental effect on the gut flora, but it usually recovers well once the stressful situation is over. However, long term stress (physical or psychological) can do lasting damage to the indigenous flora.
Other Factors
The following are also known to have an effect on our gut flora:
What does this mean for CFS/ME sufferers?
Most of us have been exposed to most of these factors, and as such our gut flora will have been influenced, and will be unable to perform all the functions that it should. By working to improve our gut flora, by following a good diet we can improve our situation, reduce many of our symptoms and improve our immune system.