Monthly Archives: November 2014

August 2012

Before I became ill, my husband and I splashed out on some tickets to see the athletics at the London 2012 Olympics.  We thought this was a once in a life time experience that we and our kids would always remember.  I was determined not to miss out on this special event, despite being unable to walk more than a few metres, unable to stand for long and unable to interact with others without getting fatigued.

We planned the day carefully.  Fortunately we had included my mum in the original ticket buying which meant an extra adult on hand to assist my husband with caring for me and the children.  We traveled by train to the Olympic park, I was in a wheelchair, and we booked a mobility scooter at the park so that I could travel around independently.  All the volunteers at the park, and at the train stations, were incredibly helpful and supportive and helped us manage the day.  I did have to negotiate some steps to our seats, but it was only one flight.  We had a great time watching the athletics, and I think the atmosphere and positive experience kept me going.  When we left the stadium I realised I was completely drained.  I could not form sentences or answer my mum’s questions.  I remember sitting on a chair, waiting for my husband to bring my mobility scooter from where it was parked and putting my hands over my ears and moaning, because I couldn’t answer my mum, or even tell her that I needed her to be quiet.  My mum and husband took me to the first aid area and I was allowed to lie down on one of their beds.  After an hour the family came back for me and I was sufficiently recharged to explore the park with my mobility scooter before we returned home.

That day out was one of the highlights of my year.  A wonderful, positive experience, which our family will always remember, but I also remember how scary it was to be so exhausted that I couldn’t even ask for help, let alone help myself.

Fast forward 2 years…..

October 2014

As I’ve been blogging for some time my recovery is going great guns, and I can now plan outings with my family.   In the half term holidays we planned an outing with my Sister-in-Law cycling down the River Lea to the Olympic Park.  We met at a car park near a lock on the river and cycled about 5 miles to the Olympic Park, then round the park – noticing all the differences since our last visit.  We stopped at a fabulous new play park near the velodrome, and also visited a cafe that served gluten and dairy free cake (it’s a rare treat for our family to find somewhere serving sweet stuff that everyone can eat).  Then we cycled back to our car and drove home.

Not only did I manage the whole day out, but our outing was on 31st October. My children had made plans with their friends to go trick or treating, so I had to quickly cook some food, and help them with their costumes.  I also walked round a couple of streets supervising my youngest son and his friend.

The difference in my two experiences is incredible.  I am grateful for both outings, but so appreciative of my current physical abilities.

I have simplified my yogurt making approach over the years.  Here’s a few key points I’ve learned over the years, followed by my simple yogurt making process.   If you want to learn more about the benefits of making yogurt this way, then please read the benefits of 24 hour fermented yoghurt.

Choice of Milk

If you use standard pasteurised milk (whether full fat, semi skimmed, or skimmed) then you need to boil the milk and allow it to cool to 43 degrees Celsius, or cooler, before you make yogurt.  Boiling is to ensure that there are no unwanted bacteria present during the yogurt making process, and the cooling is to ensure the milk is not too hot for the live yogurt culture you are adding.  I find this stage a huge pain, so when I read that you can use UHT milk straight from the carton, without boiling it first, I immediately started using that.  This simplifies the yogurt making process.

However, I have read that modern, highly processed milk contains less nutrients (particularly the fat soluble vitamins A and D) than organic milk, so if you are being ultra conscientious you could start with some lovely, local, organic milk and boil it first.  For me convenience wins, because the main nutritional benefit of the yogurt is all the “good” bacteria you are going to cultivate during fermentation.

If you can’t tolerate any dairy, even lactose free yogurt, then I have also made coconut milk yogurt.  It doesn’t set in the same way as dairy yogurt, and the taste requires some adjustment, but it can be done.  Here’s a recipe you could try if you’re interested.  It took me quite a bit of experimentation to successfully make coconut milk yogurt, but it did help me through my trial of removing dairy from my diet.

Choice of Yogurt Maker

My first yogurt maker came from a jumble sale and consisted of six little pots that fitted into a heated base.  The advantage of this arrangement is that when you transfer the yogurt to the fridge you have ready made portion size pots.  The disadvantage is that making the yogurt was more fiddly because you have to mix six small portions of milk and starter, compared to having one large container, and usually I had to mop up some spillage afterwards.

When my jumble sale yogurt maker broke I bought a yogurt maker from Lakeland and this has done excellent service.  Lakeland have excellent customer service, and when my original purchase died after 1.5 years, they replaced it with a new one.  That one is still going strong several years later.  As a result, I highly recommend the lakeland yoghurt maker.  This model has a 1 litre capacity container, meaning you mix up one big batch of yogurt, and then portion it out when you serve it, allowing flexibility on serving size, and meaning that setting the yogurt maker is quick and easy.

Choice of Starter

To make yogurt you need a starter, containing the yogurt making bacteria.  The easiest (and cheapest) way to do this is to buy a small pot of natural, live (sometimes called bio or bio-active) yogurt.   I usually buy Total yoghurt, because when I was learning about 24 hour fermented SCD yoghurt it’s what was/is recommended , because of the range of bacteria it contains.  However, you can successfully make yogurt using any live yogurt starter.  It goes without saying that you want natural yogurt, with no sweeteners, additives or flavourings.

How I make yogurt

1. Take a clean yogurt making container (I wash mine in the dishwasher, but do not sterilise it), your yogurt starter and 1 litre of UHT milk

Yogurt making ingredients

2. Mix 1 heaped teaspoon of yogurt starter with a small amount of the milk.

3. When you have a smooth(ish) paste/liquid add the rest of the milk and stir to ensure the starter is fully mixed with the milk.

4. Put the lid on, and put the container in the yogurt maker.  Make sure you switch it on, then leave it for 24 hours.

5. After 24 hours remove the container of yogurt from the yogurt maker and place in the fridge to cool for several hours.  Be careful at this stage, do not stir or shake the container, as this will affect how the yogurt sets.

6.  I generally find some liquid on top of the yogurt (this is apparently the water of hydrolysis which forms when the culture splits lactose which yields two monosaccharides and H2O).  I just carefully tip the water down the sink. Sometimes my kids just mix it back into the yogurt which is also fine, it just makes for a runnier yogurt.    The amount of liquid varies from batch to batch, the amount  in the pictures below is on the high side.

Liquid on top of homemade yogurt

7. Enjoy eating your yogurt, knowing that it is filling your gut with beneficial bacteria.  In our house it is often served with a spoonful of honey, jam or lemon curd, or some chopped fruit and nuts, or added to smoothies.  Between the five of us we get through a litre most days, so my yogurt maker is on nearly continuously.

I’ve been making my own yogurt for years, with 3 yogurt loving kids it seemed like a great way to save money, and avoid the sugar or sweetener loaded yogurts you find in the shops.

Whilst searching for ways to improve my daughter’s health in 2009 I came across the Specific Carbohydrate Diet (SCD).  Whilst we didn’t adopt the whole diet, I did take on board the recommendation to ferment my yogurt for 24 hours instead of the standard 8 hours.

According to Breaking the Vicious Cycle (a site about the SCD diet) the benefits of 24 hour fermented yogurt are:

1. Introducing 24 hour fermented yoghurt helps correct the balance of bacteria types in the gut as it repopulates the gut with beneficial bacteria which displaces the harmful bacterial.
2. S24 hour fermented yoghurt is also very nutritious and contains proteins vitamins, minerals, amino acids, fats, and much more!
3. As the yogurt bacterial culture breaks down the lactose into simpler forms, we will absorb the simpler carbohydrate molecules instead of their feeding overgrowth of bacteria in the lower intestine.
4. Its is often claimed that we can get more good bacteria from taking commercial probiotics. This is not the case and yoghurt is a very low cost source of probiotics. 24hr SCD™ yoghurt has a concentration of 3 billion cfu/ml which means that in just a cup of Yoghurt (236ml) you’ll get 708 Billion beneficial bacteria and that’s about 50 times more than that claimed for a typical 15 billion capsule.
5. 24hr yoghurt also has a higher probiotic count than commercial yoghurt because it is fermented longer.
6. The bacteria in yoghurt are fresh and in the environment they grew in, contrast this to the bacteria in a capsule which will be dormant.
7. Because the cultures produce lactic acid from the lactose in the milk, many people who are lactose intolerant are able to tolerate yoghurt.

I carried on making 24 hour fermented yogurt until my ME crash at the beginning of 2012.  For quite a long time I was incapable of making yogurt, and the rest of my family were too busy coping with the basics to do it themselves (I don’t think they realised how easy it is to make).  So for a while we made do with shop bought yogurts.  However, when my strength began returning I started making yogurt again.

Recently my son has gone on a lactose free diet, but he is able to tolerate my homemade yogurt.  He has a bowl full most days with some honey or jam.

If you’re interested in learning how I make my yoghurt (it’s very easy, but not if you have no energy for cooking) then please see How to make 24 hour fermented yogurt.

1. Pushing

Instead of listening to the fatigue in your body do you continually try and do one more thing?  Accepting your limitations and listening to your body are important for recovery.  Stop pushing and start listening.  Rest when you feel tired.

2. Commitments

Many people who develop ME/CFS had full, busy lives before their illness.  As well as being a working mum of three I coordinated our village babysitting circle, and was a committee member for the after-school club my kids attended.  Since my ME/CFS was sudden and severe, I had no choice whether to give up these commitments.  For people who have a gradual onset, or milder symptoms there is a choice to be made.  I urge you to chose your own health.  If you find an activity draining, you dread it or it worsens your symptoms listen to your body and find a way to say “No”.

 3. Housework

If you are pushing yourself to do housework, then leave it.  If you live with other people then they will need to step up and take responsibility for this.  If you live alone ask friends and family to help you out.  I had to learn to ignore the mess and dirt that I walked past in my house.  I learned to lie on the sofa with the floor covered in my kids toys and not a) pick them up myself or b) use energy asking someone else (kids or husband) to do it.  At the end of the day it’s not important.  Learn to let it go.

4. Putting others needs before your own

Perhaps you have a “helper” type of personality where you spend a lot of energy caring for others e.g. shopping for your Nan,  picking up medicine for your elderly neighbour, always helping at PTA events (see commitments).  If you’re a mum you will inevitably fall into this category. Most mums put their kids needs before their own.  When you’re healthy it’s a wonderful feeling to help others, but when you’re ill you need to put your own health first.  For you to recover you may need to disappoint those who you’ve been helping.

5. Expectations

Perhaps you’ve always been the friend who organises get togethers, or the mum who cooks Sunday lunch, or the son/daughter that visits your parents every Thursday evening, or the dad that helps with homework.  Whatever it is, unless you are a hermit you will be able to think of things others expect of you.  To recover you need to ignore others expectations and do what is right for you.  If you look forward to helping with the homework, it makes you happy and doesn’t increase your symptoms then carry on.  However, if your kids are whining that they need you, you’re dragging yourself off the sofa to try and help them, and then have to lie down to recover from the ordeal, it’s time to work out another way.  Perhaps the other parent could take this role, perhaps there is a school homework club they could join, or perhaps they could do their homework with a friend and help each other.  Change others expectations by changing your response – say no and let go.  Others expectations will  not change immediately.  This one takes time and reinforcement by you.

6. To Do Lists

I love a good list, and now I’m almost fully recovered I have gone back to making lists.  However, it was an important part of my recovery to stop making lists, stop taking responsibility for things and to let go.  This meant many things didn’t get done at all, and many things got done slower than they would have done.   However, I learned that the things on my list, which used to seem so important, are not important.  For all the things that remain undone, I am fine and my family are fine.

7. Worry/Anxiety

When we worry we activate our stress response (also known as fight or flight).  In order to heal, our body needs to be in a relaxed state, so it’s important to change our thought patterns and relax our bodies.  I found meditation really helpful for this.

8. Processed food

Processed food generally contains less nutrients than real, whole foods.  For our bodies to heal it is important to have the correct nutrients.  I accept that when you are not capable of cooking you need to take short cuts to feed yourself.  Try to choose the least processed, most nutritious option you can.  Prepared or frozen vegetables are a great way to get more vegetables in your diet when you can’t cook.  I keep a bag or salad leaves in the fridge as an instant way to add greenery to my plate.

9. Work

Some people who are mildly affected with ME/CFS manage to work successfully. Some people (like me) have a sudden and severe onset and there is no question of whether they can work.  I was dismissed from my job after being unable to work for 14 months.  However, there are others who go back to work too soon, or struggle on with their symptoms getting worse and worse each week.  If you’re one of these people, then you need to STOP.  Pushing (see number 1) will only make you worse in the long run.  You need to listen to your body.  All the symptoms: the fatigue, the dizziness, the pain etc. are your body shouting at you to stop.  It’s scary when you rely on your income, we all know benefits are hard to claim and do not offer the same level of income as a job.  When you’ve got brain fog and you’re exhausted it’s hard to think of a way out, but you need to stop the cycle you’re in.

I’ve seen a few people trying to hang on to jobs that they can’t really cope with.  In most cases people’s symptoms get worse and worse, until eventually they are forced to stop working.  Unfortunately by this stage their health is much worse and it is a longer, harder road to recovery.  If your body is telling you to reduce or stop work then please listen to it.