How I went from lying down all day to cycling the Coast to Coast

As you have probably gathered I’m no longer regularly updating this blog.  I decided that after completing my coast to coast bike ride and proving to myself that I really was fully recovered it was time to move on.  I’m still doing well, and I’m living life to the full.

In this post I want to share some of my posts that document how I went from lying down most of the time, and using a mobility scooter and electric bike to get around  to recovering my health and cycling the coast to coast bike ride in Summer 2015

How I spent most of the day

How I spent most of the day in May 2013

Completing the Coast to Coast bike ride August 2015

Completing the Coast to Coast bike ride August 2015

Although I’m no longer updating the blog, I hope it provides inspiration and help for those suffering with ME/CFS.  Below are some links  to what I consider some of the most important information about my recovery, and I hope they will be helpful to others in their recovery.  Hopefully this will enable easy access to the most important posts, without needing to trawl the archives, although there are lots more great posts in the archives if these don’t satisfy you.

  1. This post will tell you more about what Life with ME/CFS was like for me.
  2. How I dealt with my Adrenal Fatigue
  3. What supplements I took/take
  4. Why I take Magnesium
  5. my 9 tips for surviving Christmas with ME/CFS/PVF
  6. 9 things to remove from your life to aid recovery
  7. Surviving Post Exertional Malaise – PEM A Survival Guide
  8. The habits of Recovery
  9. Are you willing to change your life to regain your health?
  10. Meditation was hugely important for me, and is something I’m still practicing.
  11. The Habits of Recovery
  12. My Far infrared Sauna
  13. Sleep – the foundation of recovery, and yet so difficult to sort out.
  14. The Stop process
  15. Focus on what you’re increasing, not decreasing.
  16. Sometimes you need to Take a step backwards
  17. Nutrition was hugely important  for me.  Here’s a few links to posts about food:
    1. Should you go Gluten Free?
    2. Green Smoothies
    3. The Benefits of Juicing
    4. Fermented Foods
    5. Vegetables
    6. Sugar
    7. Foods to eat more of
    8. Foods to eat less of
    9. Salt and Dizziness

If you’ve just come across this blog; welcome and I’m sorry if you or someone you know is suffering with ME/CFS.  My recovery  involved huge changes in my lifestyle and habits.  This isn’t easy, but it is possible.   I hope that some of what helped me also helps you.

Best wishes and good luck


Book Giveway Winners

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.

Steptember and Book Giveaway


During the month of September I signed up, with some friends, to Scope’s Steptember Challenge.  You commit to walking 10,000 steps per day for 4 weeks and raise money and awareness for Scope.

I’m pleased to report that I managed over 10,000 steps every day, apart from one day where I wasn’t feeling well.  I logged a total of 348,951 steps, that’s a daily average of over 12,400 steps.  Yet more proof that my days of having to limit my physical activity are over.

Book Giveaway

Book Giveaway

Book Giveaway

I have decided the time has come to get rid of two books I bought to help my recovery.   I would like these books to go to someone who would benefit from them, so I am using the blog to give them away.  A brief description of each book can be found below.

If you would like one or both of them please email me at and I will choose a suitable new home for them.  Depending on the level of interest I may give both books to one person, or split them into separate lots, so please state which book(s) you are interested in when you message me,  and include your postal address.  I will cover all postage costs to addresses in the UK.

Beating Chronic Fatigue by Dr Kristina Downing-Orr

Chronic Fatigue Syndrome can turn every waking moment into a physical, emotional and cognitive struggle. The extreme exhaustion that characterises the condition is often misdiagnosed, leaving the sufferer to cope with the untreated causes for many years.

Dr Kristina Downing-Orr , a respected clinical psychologist, suffered from severe symptoms and was compelled to research the underlying causes in order to cure herself. Her recovery was quick and lasting, inspiring her to share her own groundbreaking treatment programme with others. Beating Chronic Fatigue is the culmination of her own experiences, clinical expertise and pioneering research.

This much-needed guide provides fresh hope for sufferers and their families that recovery is possible. In Beating Chronic Fatigue, you will discover the real causes and symptoms and a step-by-step treatment programme that will help you regain your health, energy and vitality.

From Fatigued To Fantastic by Jacob Teitelbaum, M.D.

The original, bestselling guide to treating chronic fatigue and fibromyalgia-now completely revised and updated.

For the more than twenty-five million Americans who suffer from chronic fatigue, fibromyalgia, and other fatigue-related illnesses, there is only one bestselling guide-From Fatigued to Fantastic. This new, completely updated third edition incorporates the latest advances in science and technology to help alleviate the baffling, often dismissed symptoms associated with severe, almost unrelenting fatigue.

Dr. Teitelbaum’s integrated treatment program is based on the clinically proven results of his landmark study and on his more than thirty years of experience in working with patients to overcome their illnesses. Using the most current information, Dr. Teitelbaum helps his readers evaluate their symptoms and develop an individualized program to eliminate them. Specific guidelines for diagnosis and care are clearly and concisely presented, along with supporting scientific studies and treatment recommendations that include the latest and best strategies for using prescription and over-the-counter medications, nutritional supplements, alternative therapies, and/or dietary and lifestyle modifications.

In addition to providing cutting-edge research, up-to-date scientific information, and practical advice, Dr. Teitelbaum offers the compassionate understanding of one who has himself battled and overcome these disorders.

Remember; if you would like one or both books please email me at and I will choose a suitable new home for them.  Depending on the level of interest I may give both books to one person, or split them into separate lots, so please state which book(s) you are interested in when you message me, and include your postal address.  I will cover all postage costs to addresses in the UK.  The lucky recipient(s) will be chosen on Tuesday 20th October.


Our C2C Experience

It’s over a month since my family (including my Sister in Law) and I rode the Coast to Coast (C2C) cycle route from Whitehaven to Sunderland.  I’ve had an action packed summer, hence the delay in finalising this write up of our ride.

We cycled a total of 146 miles and had a great time. The route goes through stunning scenery from start to finish, and cycling gives you time to really appreciate the views.  I’m indebted to my parents who acted as our support crew for the ride; driving our car across the country full of our clothes and food, meaning we only had to carry our picnic lunch and waterproofs on our bikes.

As regular blog readers know, I’d been planning the trip for several months. When I was bed bound I decided that if I ever recovered I would cycle the C2C, so last summer when my recovery was progressing well I started thinking about this.

Whilst I felt mostly confident about the challenge, In the back of my mind I was still worried that I wouldn’t be able to complete such a strenuous, multi-day challenge.

However I’m thrilled to report that I did manage it, and absolutely loved it. I cycled up every single hill, and there were some big ones. My fitness definitely increased over the week, and by the 4th day I was tackling hills that would have terrified me on day one.  Best of all there was no sign of the dreaded Post Exertional Malaise.  Proving that I no longer need to pace my physical activity.

Here’s a blow-by-blow account for those that want it (or just stop reading here if that’s enough for you!)

Day 1 Keswick to Whitehaven

The start

The start

The forecast for the day was heavy rain, all day, so we were thrilled when after breakfast it stopped raining and we set off in the dry. Day one was mostly uphill. Starting out at sea level there’s only one way to go: up.

The first part of the day was a gentle incline on an old railway track.  After about 10 miles we stopped for an early lunch before setting out on ever steeper hills for the afternoon.

Me cycling a steep section at the beginning of Whinlatter pass

Me cycling a steep section at the beginning of Whinlatter pass

At some point it started raining, and by the time we got to the top of the steep Whinlatter Pass we were all soaked. Fortunately from there it was downhill into Keswick. We arrived soaking wet, muddy and exhausted, but a shower and dinner revived us.

Day 2 – Keswick

This was a rest day for some of us. My legs were aching badly when I woke up, reminiscent of the old ME aches, but of course this time there was a reason for the aches. I bought some magnesium oil and sprayed this on liberally and for the rest of the week had minimal aches. I don’t know how much of that was due to me acclimatizing to the cycling and how much was due to using the oil, but I was relieved my legs felt OK.

Scafell Pike

Scafell Pike Conquered

My dad, husband and eldest son decided not to rest, but instead climbed the highest peak in England: Scafell Pike. The rest of us took a drive to a local view-point at Ashness Bridge and enjoyed a short walk.

Viewpoint near Ashness Bridge

Viewpoint near Ashness Bridge

Day 3 Keswick to Penrith

We set off in the rain, with another wet forecast.  We cycled through some stunning lake district scenery, but the low cloud meant we didn’t get the best views.  We were on some lovely quiet tracks and minor roads for most of the day, but we did have to cycle alongside the A66 for a short distance.  This made me appreciate the traffic free nature of the rest of the route even more.  It rained all morning and we were relieved to find a pub for lunch so that we could dry off and warm up.  Fortunately after a leisurely lunch the weather had brightened up and we had a dry, mid afternoon arrival in Penrith, and had the time and energy to stock up on food at the local supermarket.  We spent the night at the Wayfarers hostel, which I highly recommend.  It was superb with every detail thought about.  They were even able to sell us some new brake blocks for our son’s bike, which saved us a trip to the bike shop.

Outside Wayfarer's Hostel

Outside Wayfarer’s Hostel

Day 4 Penrith to Alston

Looking at the route profile for this day I was feeling daunted.  It contained the biggest climb of the ride – Hartside pass.  This was nearly three times the size of Whinlatter pass, which I had found exhausting.

As well as the stunning scenery there are lots of interesting sculptures and things to look at en route.  Here’s a scarecrow bike rider we came across on our way to Hartside.

Scarecrow cyclist

Scarecrow cyclist


The first part of the day was over “lumpy” terrain.  Every time we went up and down yet another steep little hill all I could think was “this isn’t even the “real” hill”.

We stopped for an early lunch a few miles before the start of the big climb.  Once on the climb we took things slowly with lots of breaks.  We had arranged to meet my mum and dad (our support crew) at the cafe at the top of the pass, and I promised the kids they could order whatever they wanted if they got to the top.  When we first started climbing we couldn’t see exactly where the route went, but eventually we could see the road winding its way up the hill and a tiny speck that we deduced was the cafe.  The tiny speck took a long time to get bigger, but eventually we got there and had some well-earned food and enjoyed the view.

Hartside Summit - the top of the biggest climb

Hartside Summit – the top of the biggest climb

From there it was downhill all the way to Alston – probably the most fun section of the whole ride.

I had expected to be good for nothing that evening, but I felt well enough for a stroll round Alston and we really enjoyed watching the red squirrels outside Alston Youth hostel.

Day 5 Alston – Consett

We knew this day had the steepest climb on it, and the highest point of the entire ride.  At Nenthead we cycled up into the cloud, and although most of the country was dry we got wet (again).  As soon as we dropped out of the cloud the rain was behind us and the rest of the day we had lots of lovely sunshine.  We all really enjoyed our cycling, so much so that just before Stanhope when there was a choice of routes instead of choosing the direct route we chose  a longer route over the moors.  To be honest I think if we’d known just how high that route would go we may not have chosen it, but we were all glad we did.  We had the most spectacular views of the whole ride from up there.

Steep hills and spectacular views - my favourite part of the ride.

Steep hills and spectacular views – my favourite part of the ride.

The day finished with another old railway track and a lovely, gentle decent to Hownsgill Viaduct, just outside Consett.  We did over 40 miles and 1000 metres of climbing on this day.  An amazing achievement for all of us, but especially me and our nine year old son, who was still riding at the front with a smile on his face at the end of the day.

Hownsgill Viaduct

Hownsgill Viaduct

Day 6 Consett- Sunderland.

We knew that this was going to be our easiest day.  All the uphills were behind us and it was more or less 27 miles downhill to the beach at Roker.  However, we got a bit carried away with ourselves and chose not to pack lunch in our panniers, confidently stating we’d eat lunch at the beach.  This was an error, as we didn’t get to the beach until after 2pm, by which time we were all starving!  I think we would have enjoyed this day more if we’d rushed it a bit less.  The scenery was still really pleasant and even the route through Sunderland avoided the worst of the Traffic.  We found a great cafe at the finish: The Beach House and proceeded to order an obscene amount of food. I think we shocked our waitress when it all got eaten, and the kids still found room for ice cream.

C2C completed - Roker, Sunderland

C2C completed – Roker, Sunderland

Wheels in the Water - Roker Beach

Wheels in the Water – Roker Beach

All in all the ride was a brilliant experience.  It increased my confidence in my physical abilities and will be remembered by the whole family for a long time to come.

Recommendations for those planning to cycle the C2C


To keep costs down, and also to make staying gluten-free easier we chose to self cater.  We stayed at:

Keswick YHA

Keswick YHA was very busy and had multiple flights of stairs to access our room, which was on the small size.  The self catering kitchen was also relatively small and ill-equipped for the number of people trying to use it.  However, it was centrally located, with a lovely balcony overlooking the river and there was a  fantastic park across the river.

Wayfarers Independent Hostel, Penrith

Wayfarer’s stood out as the best quality and best value accommodation. It is only a few years old and has been set up to cater for C2C riders with careful attention paid to what is needed.  I highly recommend this hostel.

Alston YHA

Alston Youth Hostel was surprisingly quiet, with only 2 other guests apart from us.  This meant we had all the hostel facilities pretty much to ourselves.  This was an older hostel, and the only negative was that they still use sheet sleeping bags, which I thought had been phased out years ago.  The wardens put feeders for Red Squirrels outside the lounge window and we spent a long time watching these fascinating creatures.

Hownsgill Bunkhouse

This bunkhouse was brilliantly located on a farm right on the C2C route.  It offers basic accommodation, and is aimed at the budget conscious rather than the quality focused, but it worked well for us.


Despite taking packed lunches and plenty of snacks with us each day, we also stopped at several eateries along the route.

Troutbeck Inn

We were the only customers in this pub/restaurant on a rainy lunchtime.  It seemed a bit posh for us muddy, wet cyclists, but we were too hungry and cold to travel on to an establishment geared more towards cyclists. The food was great and reasonably priced.

Hartside Cafe

I expect nearly everyone who makes it up Hartside stops here.  It’s got great views and offers traditional transport cafe type food.  It wasn’t great for gluten-free options, even the chips had gluten in, but fried eggs and chips put a smile on my daughter’s face.  There was a real sense of celebration as we ate here, having completed the biggest climb of the route.

Hemmel Cafe, Allenheads

A lovely spot with fabulous soup, chips and hot chocolate, and a wood burning stove; great for drying wet clothes.  It also had a lovely outside area, which I’m sure is popular in sunnier weather.

The Beach House, Roker

I highly recommend this.  It’s nearly opposite the finish sculpture, the décor is lovely, there’s a great view of the seafront and the food was fabulous.  They are also well equipped to deal with food intolerances.


Thank you to everyone who has donated on my just giving page and/or sent me messages of support.  It really helped on some of those hills to know I had so much support. I’m thrilled that to date we’ve raised £790. My just giving page for Invest in ME is still open if anyone else would like to make a donation.

C2C done!

This is just a short post to let you all know that I successfully completed my Coast to Coast ride.

I am writing a longer post with more detail, but I’ve realised due to other commitments I’m not going to have that ready for at least another week.

In the meantime here’s a picture of us at the finish.

C2C completed - Roker, Sunderland

C2C completed – Roker, Sunderland



July Round Up and the Start of the C2C

What happened to July?

I knew I hadn’t blogged in a while, but I was surprised that my last entry was 3rd July.  It’s been a busy month with end of term concerts, sporting events, school trips, socialising and more.  I am making the most of my recovery and getting out and living life and supporting my family in their various endeavours.

I also spent nearly a whole week in July feeling distinctly low on energy. I now think I was probably fighting off a virus, but at the time I was worried it was a return of the dreaded ME/CFS.  My kids have had various colds and a sickness bug recently, so perhaps I should be thankful that my only symptom was feeling the need to rest a lot more than usual.  However, whenever I get any of the old ME symptoms I get a bit paranoid that I haven’t really recovered after all, and with the C2C ride approaching fast I was worried I wouldn’t be able to make it. I didn’t really want to share those fears at the time in case they came true. Thankfully I’m back to normal now and I have been busy packing and baking in preparation for our trip.  We leave tomorrow to travel up to Whitehaven and will start cycling on Sunday.

I don’t know whether I’ll have any Wifi along the way to update you on my progress.  There may be posts along the way, but if not I will do a post describing the ride when I get home.

After that I’m thinking about the future of this blog.  I think I’ve shared all I can about my recovery, so the time may have come to stop creating new content.  However, I plan to spend some time working out how to make key information that may help others more easily accessible, rather than having to trawl through all my posts.

If there is more that you’d like me to share, or you’d like more detail on some of the things I’ve written about  do let me know, either in the comments section or by email at

Happy holidays.  See you on the other side of our adventure.

Keeping Cool

In a departure from the usual topic of this blog I’m going to give you some tips on how to stay cool,  and how to keep your house cool, during the current hot spell.  Please feel free to share.  This blog is not specific to M.E./CFS, but is for anyone who’s feeling too hot.

Readers in the UK will be only too aware that we’re having a heat wave at the moment.  Wednesday was the hottest July day on record, and although it’s now slightly cooler, we still have above average temperatures .

Many parts of the world have hotter weather than the UK and wonder why we make such a fuss about a temperature of 36.7 degrees Celsius, but human bodies adjust to different temperatures, so if you live in a hot climate you are probably better adapted to deal with those temperatures. Also, buildings and infrastructure are designed for the local climate. It’s easier to stay cool indoors in buildings designed to cope with hot weather, whether that’s via air conditioning or clever design.

Many people with M.E. struggle to regulate their body temperature.  If you’re someone that feels cold most of the time then perhaps you’re loving this weather.  On the other hand you could be struggling with this heat more than a healthy person would.  If your doctor has given you specific advice then please follow that, remember I’m not medically trained.  These are general tips.

Tips for keeping yourself cool

1. Stay hydrated.  Our main cooling system is sweating so in hot weather we need to drink more than normal.  To make water more interesting try putting a jug or bottle in the fridge and add fruit/herbs for flavour. Citrus (lemon, lime and/or orange), strawberries and mint all make great additions.  Leave the fruit to steep in the water for at around 30 minutes and you’ll have deliciously flavoured water with no added sugar.  If you use sparking water you can enjoy the bubbles as well.  Don’t forget you will also be loosing salt in your sweat.  I have been generous with the sea salt on my food over the last few days.

2. Wear cool clothing and a sun hat if you’re outside.  Loose, natural (cotton/linen /silk) clothing is the coolest.  Look at the traditional clothing of hot countries and you’ll see it’s not about skimpy outfits, but about cool natural fabrics that do not cling to the skin.  I don’t always adhere to this advice – I’m writing this dressed for my pilates class in cropped leggings and a sun top, but you can do better than me!

3. Stay in the shade.  The direct heat of the sun is much hotter than the shade, so avoid direct sunlight whenever possible.  If your house is cooler than outside (tips on how to keep it cool below) then I find it’s best to stay inside in the heat of the day.  Otherwise find a shady spot outside with air flow to take advantage of what breeze there is.  I love lying under a tree in my garden.

4. If you need to cool down then splash tepid water on your skin rather than cold water.  Water evaporating off your skin will have a cooling effect.  However, if you use cold water it encourages the blood vessels near your skin to contract, reducing blood flow and hence reducing the overall heat loss.  Tepid water will give you the cooling effect from the evaporation whilst not restricting blood flow to the area.

5. A tip from Wimbledon: I have seen the tennis players using ice wrapped in a towel draped around their neck to cool them down.  They are looking to cool themselves down as much as possible in the short rests between changing ends.  I’ve not tried this, but if it’s good enough for top tennis players ……..

6. Have a siesta. If your daily routine is flexible then minimise your activity during the hottest part of the day.  I’ve been waking up earlier (mostly due to traffic noise through my open bedroom window) and have had some productive mornings whilst the weather is cool.  Then I am more than happy to rest during the afternoon heat.

7. If all else fails visit somewhere with air conditioning.  Many restaurants and shopping centres have air conditioning.  I suspect they’ve been busier than usual in this weather.  Of course if you’re struggling with ME you may not be well enough to do this, and for that I’m sorry.  I know how tough this illness can be. Just hold on to the fact that in next year’s hot spell you may well be better.

Tips for keeping your house cool

I used to teach about the energy efficiency of buildings in my pre-ME/CFS career, so hopefully I’ll be able to help you keep your house cooler.

The first thing to do is to minimise the heat getting into your house on a hot day.  This means if the outside temerature is hotter than the inside you should keep all doors and windows shut.  I know this is counter intuitive, but on Wednesday the maximum temperature in my lounge was 25 degrees Celsius whilst outside it was about 35 degrees Celsius.  If I had left my windows open the house would have been a similar temperature to outside.  It’s difficult to decide at what point it becomes better to keep the windows closed, but generally if there is little breeze and the temperature is in the high twenties or thirties I keep them closed.  If the temperature outside is expected to stay below about 25 degrees Celsius and there is a good breeze I tend to keep them open.  If your house is at 20 degrees, then try and close the windows when the outside temerature reaches this temperature – that’s been quite early these last few days.

One exception to the closed window rule could be if you have a loft conversion that gets really hot.  There’s two main reasons for this.  Firstly your roof may be poorly insulated and it’s probably in direct sunlight all day, so a lot of the heat from the roof will transfer into the room below.  Secondly, hot air rises, so air at the top of the house will be warmer than air at ground level.  It can be beneficial to open a window in the attic to let hot air escape.  Pay attention to what’s going on in your house and work out the best combination of open/closed windows for your particular house.

The next thing to do is minimise direct sunlight entering the home.  In many hot countries they have outside shutters and/or shades above windows, and smaller windows, or windows only on the north side of the building.  However, most homes in this country are not built to that design.  In fact many of us have large south facing windows, to maximise light on dull days and instead of external shutters, we have curtains or blinds on the inside of windows.  Shut the curtains/blinds on all windows directly facing the sun.  If you pay attention you will soon notice which windows face the sun at which times of the day.  In my house I have the curtains on one side of the house shut in the morning, and then  after lunch I can open them, but need to shut the ones at the rear of the house for the afternoon.  This minimises the solar gain (heat from direct sunlight entering the house).

Brick, stone or concrete houses are good at absorbing heat and can then release the heat slowly once the air temperature cools down.  This means they are able to help regulate the internal temperature of the house.  The best way to utilise this effect during a heatwave is to use a system called night time cooling.

Night time cooling works by letting air flow through the house at night, when the outside temperature is cooler than the inside.  The bricks/stone will slowly cool down as they release their stored heat into the cooler air.  Then, as advised above, as the temperature outside increases during the day shut the windows and curtains/blinds.  The house will still heat up during the day, but the cooler walls will be able to absorb some of this heat, helping to keep your house at a comfortable temperature.  The maximum cooling effect will occur if you can get a good through draft going – have windows open on opposite sides of the building and keep internal doors propped open (unless they’re fire doors)*. By using this method I have cooled my living room down from 25 degrees in the evening to 20 degrees by 8 am.  Most of this has been done by having all the windows and doors open in the late evening and from 6 am -8.30 am, as we can’t leave our downstairs window open over night for security reasons.

Minimise sources of heat in the house.  Here’s a few examples:

  •  Try to avoid turning your oven on, in fact I’ve been trying to minimise any use of my stove over the past few days.
  • Try running your dishwasher at night/ in the evening when you can have your kitchen windows open to let the heat out.
  • Turn your computer off when you’re not using it, this may be a small heat source, but every little helps.
  • Don’t leave your iron plugged in.  I mention this because I failed to notice for several hours yesterday that my son had left the iron on – not ideal for our electricity bill, although probably a very minimal heat source for the house!
  • If you have a hot water tank think about when you heat your water.  If you have a tank of hot water sitting there all day, it will be heating up your home to some extent, even if it’s well insulated.  Can you make do with only turning your hot water on in the evening and/or reduce the amount you have it on in the day?

Long term ways of improving the energy efficiency of your home

The tips above are all things you can do today to keep you and your home cool.  However, by considering improvements to your home you can improve the thermal properties of your home and this will help keep you cooler in the summer and warmer in the winter.  I could write a whole blog on this, in fact I used to run a course teaching home owners about energy efficiency. Instead I’m just going to list some ideas very briefly. If you want to know more about any of this then please contact me, it’s something I love to talk about.

  • Insulation: There are plenty of schemes available to help you insulate your home: loft, cavity walls or solid walls.  For people on low incomes it’s often possible to get work done for free.  We have recently taken advantage of a grant towards external solid wall insulation for our house.  Our south facing back bedrooms are cooler than in previous hot weather and in winter it should reduce our heating bill.
  • Double, triple or secondary glazing.  When we moved into our house it had a mixture of single and double glazing.  We installed some home made secondary double glazing to the single glazed windows, similar to this commercial product: we bought some sheets of perspex, cut to size, and added some strip magnets. Eventually we replaced the single glazings with modern double glazing.  The secondary glazing helped, but the new double glazing is even better.
  • Sun shades over windows.  This is a great way to reduce the sunlight entering into your house.  You can buy commercial blinds, or Brise Soleil, or you can make your own sunshade like this couple have.

I could go on and on, but this is already a very long post, so I’ll finish here.  Please contact me at if you’d like more information about any of this.

*You obviously need to consider the security risk  of open windows.  I’m assuming you’re sensible enough to know when it’s safe/not safe to open your own windows.




Do Great Things

“If you cannot do great things, do small things in a great way” Napoleon Hill

I came across this quote a few months ago whilst completing my 5 minute journal (part of my Miracle Morning).

To me it seems a really valid approach to life with ME/CFS.  When you’re suffering with ME/CFS it’s hard to do anything.  Most achievements are very small.  Perhaps you’re pleased because you’ve managed to get dressed, or wash your hair.  Maybe you’re ecstatic because you had enough energy to read a story to your child.

Doing great things may be off the agenda for now, although I know people with ME/CFS who have started businesses from their beds, or campaigned for fairer treatment by doctors or the benefit system.

However, doing small things in a great way is definitely possible.

What’s a great way?

  • making sure the small things you’re doing feel right for you
  • say no to things that make you miserable and yes to things that make you happier
  • feeling grateful for everything you can do
  • listen to your body and rest when you need to
  • Have realistic expectations
  • Celebrate your small achievements with family and friends

What small things can you do in a great way?

Natural Deodorant

When I found out that my infra red sauna was helping me, and that the sauna’s main function was helping the body to detox I realised that I should do my best to reduce the toxins entering my body.

As well as eating well I started to think about what I put on my body – shower gel, shampoo, deodorant and moisturiser etc.. I don’t wear make up very often, so that wasn’t a big issue for me.

A bit of googling led me to the Wellness Mama website and a recipe for natural deodorant. I made up a batch and was surprised by how effective it was. The only odour was a bit of coconut. I was happy to have found an effective way to remain odour free without my usual spray on deodorant. Sadly after a couple of weeks I developed a rash on my armpits, and had to stop using the recipe. I read that some people react to the Bicarbonate of Soda in the mixture, so after my rash subsided I tried again with pure coconut oil. Again this was surprisingly effective, but I soon developed another rash.

Finally I tried another recommended option – magnesium oil. This worked well for me and I used it with reasonable success for several months.  As well as acting as a deodorant the magnesium oil was absorbed through the skin and helped me with other symptoms, as I explained in this post. However, it’s not 100% effective as a deodorant and with my cycle training I  wanted to experiment and see if I could find a better solution.

A newer post on the Wellness Mama website led me to the idea of detoxing my armpits. Yes, it’s a bit weird, but no more weird than a face mask. I did that a few times and then re-tried the original  natural deodorant recipe. I’ve been tolerating the natural deodorant for several months now and I’m amazed at how effective it is – I rate this recipe as more effective than conventional deodorant.

If you think detoxing is an issue for you I encourage you to try some more natural products on your skin. You too may be surprised by how effective they can be.

Eating Gluten Free on a French Exchange

Our choir singing with the French choir

Our choir singing with the French choir

Our area is twinned with a French town, and last summer a French choir visited us as part of an exchange.  This year it was our turn to visit France, and perform in a joint concert.

From a previous holiday in France I know that eating gluten free can be challenging. This trip presented more challenges than my previous self catering holiday because it was an organised group trip where I would be staying with a host family and eating meals at their home or with the group.  This meant I had no control over food purchasing and preparation.  I also needed food for the 12 hour coach journey there and back.  Previous experience of French service stations led me to believe it would be extremely difficult to find gluten free food there, so I needed to be fully self sufficient not only for the way there, but more challenging, for the way home.  I’m sure if I was fluent in French this trip would be less daunting, but my French is pretty non-existent, I don’t even have GCSE French, although I have learnt that gluten free is sans gluten and wheat is blé.

Here’s what I did to prepare for the trip

  • made sure the trip organisers knew I was gluten free
  • contacted my host family directly and discussed which food I could and could not eat. Fortunately I was staying with the same family I had hosted in our home last year, so we already knew each other, and I knew the guy spoke reasonable English.
  • Planned what food to take for my journey
  • Planned extra food for during the trip in case my host family had misunderstood, or we were at a group meal where the message had got lost.

Here’s a list of the food I took for my trip:

Journey out:

  • Banana pancakes with yoghurt and berries.  I made these the night before and they tasted fine the next day.  I packed the yogurt and berries in seperate, leak proof containers and tipped them over the pancakes when I was ready to eat them
  • Falafel and mint sauce
  • hummus and vegetable sticks
  • An apple
  • Homemade brownie (I try and keep some of these in the freezer so I can take them out when needed)
  • 2 hard boiled eggs.  I forgot to take these off the coach at our lunch stop, and I didn’t want to eat them on the coach and stink everyone out, so these went to waste, but they are a good travel food.

Journey back:

This was challenging. I needed a whole days worth of food that would taste reasonably good, satisfy me and could survive 3 days unchilled.  I searched on the internet to come up with ideas.  Here’s what I decided on:

  • 1 pack of beef jerky
  • 1 tin of chicken – I haven’t eaten tinned meat for years, but this seemed a good idea if I got hungry.  I took my penknife so I could open the tin.
  • gluten free crackers
  • dried apricots
  • roasted seeds (munchy seeds)
  • a jar of mini peppers stuffed with feta cheese

Additional food for during the weekend in case of misunderstandings with my hosts:

  • 1 pack of gluten free bread rolls
  • more gluten free crackers

What happened?

My hosts went above and beyond to cater for me with gluten free food. Breakfast and picnic lunches were eaten with our host families, who did a great job.  They had bought plenty of gluten free bread.  Bread is a staple at every meal in France, and although I don’t usually eat much bread at home it was easier to just go with the flow and accept what was offered.  I must admit that by day 3 the bread was stale, but at least I had plenty to eat.  Additionally my hosts made 3 different gluten free cakes.  Given we were only there for less than 2.5 days this was incredible.  I am hoping to get the recipe for at least one of them because it was one of the best gluten free cakes I’ve ever eaten.

On the Saturday evening the entire group of French and English exchangers ate at restaurant. The restaurant knew that there was a gluten free person (and several other food allergies) in the group.  However, despite me asking one of the French people on our table to talk to the waiter and tell him I was gluten free, I had a bread roll at my place and when the starter arrived it had a crisp bread with it.  I tried to ask the waiter if it was gluten free, and  he told me it was, but I had already decided not to risk it when another waiter came swooping in and took it away.  After that I could tell my food was gluten free as it differed in small aspects to others on the table.  The food, setting and company were all fantastic and I had a great evening.

On the Sunday evening we got together with the French and English choirs for a “pot luck” supper catered by our French hosts.  This was my worst nightmare.  If I’m going to an event like this I generally eat before I go because most of the dishes at a UK pot luck contain gluten and if I hog my gluten free contribution I look mean.  My host had made a small plate of gluten free appetizers, and a gluten free cake.  The problem was that as we arrived all the starters got put on one table, a quick scan and I knew the only one I could eat was the plate my host had bought, so I hovered near it and scooped some up before it got shared around.  I may have looked greedy, but I did explain to the English people nearby what I was doing and why.   I was pleasantly surprised by the main course.  There were plenty of naturally gluten free salads and meats that I could eat – far more than you would generally find at an English buffet. For dessert my host made sure I got a slice of her cake before it got passed around.  I didn’t have to dig into the secret stash of crackers and jerky I’d put into my handbag, and another great time was had by all.

The journey home:  My lovely French hosts made me a packed lunch with sandwiches and fruit.  By the time I unwrapped the sandwiches the bread was very stale, but I ate the ham and fruit.  I also ate plenty of my supplies of food, but I didn’t get desperate enough for the tinned chicken.  I’ll be hiding that in a family meal soon.

Over all I had planned for the worst, so even if I had been served lots of food with gluten in I could have coped, but the reality was fantastic.  I’m so glad I went on this trip, although I won’t be volunteering for another 12 hour coach trip in a hurry.