Yesterday I put all the names into a hat for the book giveaway. The two winners were Tracey Clark (From Fatigued to Fantastic) and H Tomlinson (Beat Chronic Fatigue).
I have replied to everyone who entered the give away, so that all the entrants know whether they’ve been successful or not.
I wish you all the best of health.
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There’s been lots happening recently, so I thought I’d cover several topics in one post. The hiatus in posts has been partly due to being busy and partly due to our broadband and phone connection being down for a week. There were cheers in our house this morning when the kids realised the internet was back!
Last week the whole family cycled for two days, with a night in a youth hostel. We had a great time and managed to cycle 5o hilly miles in two days. We are all much more confident now about doing the C2C challenge.
I’ve been out cycling up and down some local hills this morning. I’m not sure how far I went, but I cycled for about 90 minutes and made it to the top of all the hills without having to get off and push. The hills on the C2C will be bigger, but hopefully with some more training I’ll make it up them too.
The local choir I sing with recently took part in an exchange with a French choir. I plan to write a post about how I coped food wise on this trip, but for now I’ll just say it was a fantastic experience and I felt fit and healthy the whole time. We had a packed schedule and lots of travelling (by coach), so everyone was exhausted by the time we got home, but there was no sign of ME/CFS, and I kept up with the everyone else.
My nutritionist cousin suggested I get some blood tests done whilst I feel good, so that if I relapse I will have a healthy baseline to compare results to. I was surprised to find that the results showed I was anaemic. I started on iron pills and within a week I felt much more energetic. I mentioned in my May 12th post that I sometimes needed to rest in the day. I now realise that was down to the anaemia. Now I’m taking the supplements I feel great. My doctor is investigating why I’m prone to low iron levels (several previous blood tests showed I had low ferratine stores, and I have been on iron tablets a few times). It’s so great to have a problem that can be diagnosed and treated. I hope one day that there is proper diagnosis and treatment for ME/CFS.
If it wasn’t for my cousin I would not have requested these blood tests, and because I was so grateful to feel so much better than I had in the past I hadn’t thought to raise the small amount of remaining fatigue with my GP. Please learn from this and request regular blood tests and mention changes in symptoms to your GP.
I’ve updated my page about Adrenal Fatigue. If you’re interested you can find it here. I wrote a very short piece about adrenal fatigue when I first created the blog. The update is still brief, but hopefully gives a bit more useful information. If you’ve got questions then mention it in the comments section I’ll do my best to answer.
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Happy New Year.
I have more time for reading at the moment, so I decided it would be a good time to share some of my favourite blogs with you. I often find new blogs I like via links in blogs I already follow, so perhaps one or two of these will appeal to you.
1. Be More With Less by Courtney Carver
Courtney’s blog was part of the reason I decided to start blogging. She is inspirational and writes beautifully.
2. Project 333 also by Courtney Carver
I have been doing the dressing with less thing for a year now. I haven’t been ultra strict with the rules, but it’s been interesting. I’ve learned a lot, and plan to continue next year. I’m not jumping on the new kitchen challenge just yet, I’m not sure our family are ready for that.
This guy has an alternative view on the world. Whilst I don’t agree with everything he says, I always enjoy reading his posts, and he has provided much food for thought.
4. Wildmind Buddhist Meditation
This is a great website that runs online meditation classes and challenges. I find meditation really helpful, but now I’m more active it’s harder to find time for it. Following this blog reminds me to keep practising.
5. zenhabits by Leo Babauta
If you’re having trouble sticking to habits you know would help your health (or anything else for that matter) then take a look at Leo’s blog. I have followed this blog for several years now, and I’m not bored yet!
This is a fairly new blog by a fellow ME/CFS sufferer, and on-line friend of mine. Her experience of the illness and the impacts on her life are different to mine, but I love her honest accounts of how her life is affected.
That’s all folks. See you in the New Year.
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I’m a bit late getting this post out, as I’ve been following my own advice and prioritising, and unfortunately this post got pushed down the list. There’s still a few days to go, so here’s a few tips to help you through the festive season:
If you have limited energy you have to accept that you can’t do everything. To make Christmas the best it can be don’t waste energy on things you don’t care about.
My first Christmas with ME/CFS I was in a bad way. I had a relapse caused by bronchitis and was largely bed bound. Before my relapse I had made a list prioritising what was most important to me about Christmas. This was to help me decide what to say no to, and what to go ahead with. In the event I had to say no to almost everything.
That year I made the top two items on the list: – watch my kids open their presents and eat Christmas dinner with my family. I spent the rest of the day in bed, happy that I’d managed that. Of course there were a lot more items on my list that I didn’t manage, but if I had used my energy on some of the items lower down my list I may have missed my top two.
This year I have loads going on: I’m singing in choir concerts, going to parties, buying presents, wrapping them and cooking the Christmas dinner (with gluten and lactose free substitutions for those that need them). It may sound like I’m doing it all, and yet I am still editing out activities that I don’t value. For example I’m not sending Christmas cards and we’ve said no to some social engagements. I am still prioritising, it’s just I can say yes to a lot more.
If you always visit Great Aunt Mildred, but you don’t enjoy it, then I urge you not to use your energy that way. You may think that’s being selfish, I think it’s taking care of yourself, and that’s important.
Your priorities may be very different to mine. Perhaps the most important part of your Christmas is seeing your friends in the pub on Christmas Eve, or going to midnight mass, or visiting your Gran. Think about what is important to you, put your energy towards that and try and steer clear of the parts you don’t value.
With all the extra activity going on it’s important to make time to rest. I admit I need to improve on this one at the moment. It’s easy to get caught up in the list of things to do, but number one on the list every day should be the rest you know you need. At the moment I’m trying to rest once a day, although I can get through the day without a rest. This time two years ago, I was virtually bed bound and spending most of my time resting, and this time last year, I was on 2-3 rests most days. Our rest requirements are individual, and change as our illness changes. Prioritise whatever the rest is that you need.
My sleep is generally good, since I dealt with my adrenal fatigue. However, I’ve noticed in the last week I am taking longer to drop off to sleep at night and hence finding it harder to get going in the morning. I think this is a sign that I need to spend more time resting/meditating in the day, so that I am calmer when I go to bed. Sleep needs to be a priority because if you aren’t sleeping well, you aren’t good for much in the day.
The people you live with probably have a good idea of how much/little you can do. However, at Christmas we often spend time with family and friends who know us less well. It may be helpful to have a conversation about your capabilities. For example, last Christmas my extended family knew I would probably need to go and rest at some point in the day, so when I disappeared for an hour or two no-one was worried. My friends also know I am likely to be one of the first to leave a social gathering. This is also a great way to get out of the washing up after Christmas Dinner!
There are lots of “treat” foods around at Christmas. I’ve recently discovered some extremely tasty gluten free mince pies, and the box is already empty! I am not going to be sugar free over the holidays, but I will still be eating plenty of nourishing foods. By focusing on nourishing my body rather than banning all the treats I find a balance I am happy with.
Being gluten free means that I have to say no to lots of the yummy treats that appear. I have several coping strategies for that. For example at a pot-luck buffet I know I will hardly be able to eat anything (other than the dish I take), so I will ensure I eat before I go. I am buying and making gluten free versions of favourite Christmas treats (hence the mince pies).
Some people with ME/CFS are alcohol intolerant. I was for quite a long time. Even a quarter of a glass of wine would make me feel like I had the worst hangover ever. Given that ME/CFS symptoms can seem like you have a hangover 24/7 I didn’t feel much like drinking anyway, and if you’re in the early phases of the illness you probably won’t either.
Now I can indulge in moderation, and on special occasions I will have a glass or two of my favourite tipple. The problem with Christmas is that it can feel like a special occasion every night. I have a rough idea of when I will be imbibing and when I will stick to soft drinks. However, I want to allow room for spontaneity, so it’s not set in stone. Also if I start to struggle with symptoms or energy levels then alcohol will be the first thing to go.
My husband is great at picking up the slack when I can’t manage things. In previous years he has managed to cook Christmas dinner, buy and wrap all the presents, supervise the kids decorating the Christmas tree and all the other myriad of jobs that go to making Christmas in our house.
You may decide you’d rather not bother with Christmas decorations, or perhaps it’s really important to you to have the house festooned from December 1st. Think about what’s important, and if it is important then see who can help you.
There’s a lot of traditions around Christmas. My kids have very clear expectations. There’s a long list of we always ……put the stocking on the banister; leave a mince pie and a glass of milk for father Christmas (we tried to persuade them he’d prefer a whisky, but they were adamant about the milk) etc. etc.
It’s good to recognise that although you’ve always done things one way, they don’t have to be done that way for ever, and indeed these things naturally evolve as the ages of those participating in Christmas change. For example if the children are older perhaps the tradition has changed from playing with toys whilst the dinner is cooking to going down the pub. Although there are a lot of expectations at this time of year, we are free to change things. Think of how you can change your day to make it easier for you, but still enjoyable for everyone.
Instead of moaning about all the things you are missing out on, be grateful for the things you do manage to do, and the people you manage to spend time with. Focusing on things I’m grateful for really helps me to stay positive when things are tough.
Enjoy yourself. Laughter is the best medicine.
Merry Christmas
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Here is a great article by Authority Nutrition which has links to some of the science refuting common nutritional recommendations.
I was staggered to discover whilst watching the TV programme The Men Who Made Us Fat that the nutrition advice from the American Government, also largely followed by the British Government, had no scientific research behind it. Lots of the scientific research done to try and prove the recommendations were sound, actually proved the problems that were caused by eating a low fat, high carbohydrate diet.
Listening to free podcasts from Jonathan Bailor (The SANE Show) further reinforced why changing the way I ate was so important for my health.
I followed the standard nutritional advice for years, diligently eating wholemeal bread, pasta and other wholegrain foods. The result? Me and my daughter have chronic health conditions. I can’t say that my ME was caused by what I ate, but it could be one component. Certainly changing my diet away from Government Recommendations and towards a diet recommended by my nutritionist (see foods to eat more of and foods to eat less of), who does know what the research says, has been a factor in my recovery.
Once your eyes are opened to how unhealthy the government healthy eating advice is you have the opportunity to take back control over what you eat.
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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.
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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.
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.
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.
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.
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.
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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:
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.
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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.
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”.
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.
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.
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.
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.
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.
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.
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.
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Are you spending your time feeling like death, no energy for the basics in life let alone the fun stuff? Are you unable to spend time with the people you love, unable to work or do hobbies? Do you have to drag yourself out of bed to do the most basic of tasks? Do you rely on others to care for you?
I know how it feels, I’ve been there. When I was diagnosed with ME/CFS in April 2012 I had symptoms in 7 of the 8 categories in the CDC criteria and I also met the more stringent Canada working case definition. I had so many symptoms and didn’t understand what had happened to the body I had always been able to rely on.
If I turned up at your house and offered you this deal, would you take it?
The Deal: You could have your life back, including energy for socialising, working, hobbies. Whatever it is you want to do with your life, you’ll have the energy to do it in. However, in return you have to:
What would you say if I offered you that deal?
I know if someone had offered me that I would have bitten their hands off. I was desperate to recover. I used a program called Secrets to Recovery from the Optimum Health Clinic, which gave me information about all of the above, and built my belief in recovery. I used this programme a lot in my first 18 months of illness, and with this and the advice of my nutritionist I have recovered substantially.
When I first found out the recommendations of the OHC revolved around psychology and nutrition I was disappointed. How could this deal with my symptoms? I felt like death; I felt more ill than I ever had in my life. I thought I needed more than this to regain my health. However, the results of all my googling didn’t turn up any better ideas to try, so I tried these, and slowly, ever so slowly, they have worked.
I know not everyone can afford the OHC programme or a nutritionist, and that’s why I set up this blog. To share what has helped me recover in the hope that it will help others.
If you have been ill a long time (or even if you’ve only just been diagnosed), take a look at how you’re living. It’s not easy to change your life, but I believe it’s essential to recovery. The changes are hard at first, but tend to get easier with time, and if there is a chance that you too could recover by making these changes what have you got to lose?
My life now is different to pre-illness. This is because I’ve recognised that how I was living before was not good for my health. However, I am building a new, happy, healthy life. I hope you can too.
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