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 eat4meblog@gmail.com 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.

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.

Coast to Coast Route Map

I’m very excited to announce something that I’ve been planning for several months.

This summer I will be cycling the Coast to Coast (C2C) Cycle Route from Whitehaven to Sunderland, a total of 135 miles, and raising money for Invest in ME along the way.

I will be cycling with my husband, 3 kids and my sister in law. I’ve planned our route and booked accommodation along the way, so we are now committed to 5 days of cycling 20-30 miles per day.

I’m so excited about this trip. It’s something I’ve wanted to do ever since Sustrans launched the route in the 1990s.  When I had my relapse in December 2012 and was mostly bed bound for several weeks, I promised myself that if I recovered I would cycle this route.

Last summer I managed a 26km (16 mile) bike ride and I started talking to my husband about the possibility of doing the C2C. Fortunately for me he’s cycle mad and thinks it’s a great idea to go on a cycle touring holiday with 3 kids!

This will be a huge physical challenge for me.  Although pre-illness I cycled the London to Cambridge a couple of times (58 miles), I haven’t cycled as far as that 16 mile ride since the summer, and for the winter months my cycling has been confined to the 1 mile round trip to school twice a day. As soon as the weather warms up I plan to start training so that I can hopefully manage the distances involved (and the hills – eek) with no problem when the time comes.

Keen cyclists will scoff at the distances we are doing each day, but just over a year ago I was using a mobility scooter and electric bike to get around, so for me this is a big deal.  Also the youngest member of our party will be only 9 years old, so this is a huge challenge for him too.

I’m hoping this ride will prove that I am fully recovered and give me more confidence in my abilities going forward. One of my main symptoms was Post Exertional Malaise, so  multi-day physical activity is the ultimate challenge.  If I have any lingering symptoms they will appear after a day or two of physical exertion and I will then struggle to cycle the following day.

My parents will be our support crew for the ride, carrying luggage and driving our car from the start point to the end point.  This does mean that if it turns out I’m not fully recovered there is a plan B involving the car.  However, I plan to stick firmly to plan A and pedal my bike all the way from Coast to Coast.

I have set up a just-giving page for the ride.  If you would like to support Invest in ME then please head to my fundraising page.  If you don’t wish to donate, but wish to support my efforts then please leave a comment below.  I need all the help I can get to help me over those hills!

On 30th December I listened to an Underground Wellness podcast with Hal Elrod as the guest.   The podcast described how Hal had changed his morning routine to include activities that successful people do, and it had a profound effect on his life.  Both his wellbeing, and his success in business.

At the time I had been pondering the wording of  a new year’s resolution that would strengthen my meditation habit, which had almost completely disappeared over the Christmas period. On hearing the podcast I decided that I would try the Miracle Morning instead and see how it went.

The six activities that make up the Miracle Morning are:

1. Meditation
2. Affirmations
3. Visualisation
4. Reading
5. Exercise
6. Journalling – Hal recommends the five minute journal

When Hal originally set out his miracle morning he decided to devote an hour a day to his self improvement, and initially spent 10 minutes on each activity.  He subsequently amended this, so that some activities got more time and some got less.

My first problem was the idea of getting up an hour earlier to do all these activities before the rest of the family got up.  That didn’t make sense to me.  I’ve spent a long time regaining my health, and sleep is an important part of maintaining it.  Instead I decided to interweave the activities into my existing routine, only aiming to fit in meditation when the house is quiet.  So here’s what my morning routine has been for the last few weeks.

• 6.50 Alarm – get up straight away
• 6.55 Start Meditation
• 7.10 Have breakfast, make packed lunches, do laundry, clean up kitchen and all the usual stuff that goes on with 3 kids getting ready for school)
• 8.00 Affirmations and visualisation
• 8.10 Shower and Dress
• 8.25  The five minute journal
• 8.30 school run
• 9.10 – return from school run and exercise
• 9.30 – get on with my day

What I’ve learned from this

• I can adapt Hal’s ideas to fit my own circumstances.
• My morning routine doesn’t have to be completed before the school run.  I have the luxury of not working at the moment.  This means I can get the sleep I want and push some of the routine later.
• With 3 kids morning are a bit chaotic – it’s inevitable.  I can’t change that, but trying to fit in 5 minute chunks of affirmations, visualizations and journalling is achievable most days, and 1 or 2 minutes is still better than nothing if I get interrupted.
• If I don’t manage to fit any of the above in due to the chaos, it’s not a disaster. I can add it on to the end of my routine after the exercise.
• As long as I commit to this and prioritise it over other activities it’s very achievable.
• I am finding it surprisingly enjoyable.  It sets me up in a good way for the day, and I am motivated to get up the next day and do it again.
• What you do the night before is an important part of getting up the next day, particularly going to bed on time.

I had no clue what affirmations to use, so I took one for self confidence from the free resources section of the Miracle Morning website. I’ve also been using some bedtime affirmations from the same webpage.  After trialling them for a couple of weeks I am beginning to see ways I would like to personalise them, so I will probably alter them over the next few days – I will simply use my 5 minutes a day for affirmations to make the changes.

I had no idea how to go about the visualisation section at first, because you’re supposed to visaulise what you want to achieve.  For a long time my goal has been regaining my health, and now I’ve achieved that I wasn’t sure I knew what I wanted, but I spent 5 minutes on my first morning trying to think of things and came up with a pretty good list, which I added to over the next few days.  I then used a visualisation board app on my phone to make a visual representation of my list, and I simply look at this for the 5 minutes each morning.  It’s really great to spend a few minutes reminding yourself what you think is important each morning.

You might have noticed that I didn’t include reading in my list.  I don’t think reading novels counts here The idea, I think, is to read something that’s going to educate, inform or inspire you.    However because I already do plenty of reading throughout my day, mainly blog posts, I decided I had that covered and it seemed like a step too far to try to add it in to my morning.  For me it’s better to do 5 activities consistently, than struggle with 6 and give up the whole thing.

If you’re in the throes of ME/CFS then you won’t want a morning routine like this.  Instead, why not incorporate some, or all, of these elements into your day?  Affirmations about regaining health and visualising walking or doing an activity you love can really help recovery, and don’t have to be done in the morning.  I’ve blogged previously about how I used to use guided meditation throughout my day – 4 sessions per day, to keep myself in a relaxed, healing state.  Reading recovery stories (and hopefully this blog) can also help build confidence in your own ability to recover.  I’ve also mentioned journalling before.  If that’s not your thing then try the Five Minute Journal.  It’s quick and easy. Exercise is probably best avoided, expecially in the early stages, although some simple yoga, Tai Chi or Qi Gong may be appropriate depending on your stamina.

I’m interested to hear whether any of you have tried the miracle morning or incorporate any of these elements into your days.  For me, I now need to see if it’s something that sticks long term.  At the moment it feels good, so I’m optimistic it won’t be a January resolution thats forgotten by February.

In my ME/CFS Awareness Day post I explained that Post Exertional Malaise (PEM) is one of my main symptoms.  Since I’ve been suffering this week I thought I would share my survival strategies with you.

1. Acceptance

It’s important to accept your current capabilities.  When you have PEM you  feel awful, and can do less activity than usual.  If you try and ignore your body, push through and carry on as usual you will make the situation worse.

You get PEM when your mitochondria can’t provide enough energy to meet demand and switch to anaerobic mode.  It takes time for your body to process the waste products from this and produce more ATP so that you can function normally again (see Dr Myhill’s website if you want a detailed explanation of the cellular processes).  In the meantime, if you push you will be forcing your mitochondria into anaerobic mode again, it will take you longer to recover and you will feel worse because you will have even more lactic acid build up.  So, accept where you are, adjust your activity levels accordingly and be kind to yourself.

2. Cancel Everything

When you have PEM the kindest thing you can do for your body is allow it to recover, the way it will do this is via rest.  Have a look at what you’ve planned for the day and cancel all non-essential activities.  Depending on where you are on the recovery scale this will vary.   For example I used to have to arrange for someone else to take my kids to school, cook dinner, brush my hair etc. .  Now because a normal day is much more active I can still manage basic self care activities like having a shower and putting dinner in the slow cooker.  I cut back on activities like hanging out the washing or going to the supermarket and I do the school run on my electric bike without pedalling.  The level of activity you can manage is different for everyone, it’s really important to listen to your body and not try and do things that increase your symptoms.

3. Drink Water

Your body is struggling to get rid of toxins.  By drinking plenty of water you will help flush everything out.  For variety, or if you struggle to drink plain water, try hot water with a slice of lemon.

4. Eat Good Food

By good food I mean food that is easy to digest and will provide plenty of nutrients.  Some foods need more energy than others to digest.  Your body is low on energy, so the last thing you should be doing is eating foods that need energy to process them.  The same old advice applies here: plenty of vegetables, lean protein and healthy fats.  Avoid sugar and refined flour products, brown rice is a great option for a carbohydrate portion.  You need to make eating good food easy on bad days, so try and have some food in the freezer, or buy pre-prepared vegetables that you can eat with little or no preparation.  Bags of carrot batons and salad leaves are great options for no cook vegetables.

5. Meditation/Relaxation

All those toxins flowing through the body are a stress on your system.  Given that most people with ME/CFS have Adrenal Fatigue, it’s important to try and minimise your stress level.  Meditation or guided relaxation is a great way to do this.

6. Kind Self Talk

When you have PEM you feel awful and it’s easy to get caught up in negative thoughts.  Here’s a few I’ve experienced:

• It’s all my fault, I was stupid to do …….(the activity that caused the PEM)
• Why can’t I just pace properly?
• I’ve ruined my recovery.
• I’m always going to feel like this.
• I’m never going to recover.

Actually none of these thoughts reflect the reality.  Here’s a more real version of events:

• I didn’t mean to overdo things and get PEM, it was an accident
• You have to “Bounce the Boundaries” in your recovery and try doing extra activities, otherwise you will never improve.  Sometimes these experiments will show you you’re not ready for that level of activity yet.  It’s all part of the process.
• This is a temporary set back.
• You don’t feel like this all the time, most of the time you feel better.
• You will soon be back to how you used to feel and your recovery will continue.

In the first months of my illness I needed my husband to point out to me that my negative thoughts were incorrect.  Now, after all the practise I’ve had, I can usually quickly counteract them myself if they pop up, and they pop up a lot less than they used to.

7. Gratitude

A regular focus on things in your life you are grateful can really help you feel more positive about your situation.  I like to list 5 things I’m grateful for.  When I’m feeling low this is sometimes a stuggle, but I can always think of 5 eventually. They don’t have to be big things.  Here’s a few examples, but everyone’s list will be different.

• I have a comfy bed to lie in
• I am warm and dry  in my house
• I have a husband who cares for me
• I have plenty of food to eat.
• I can see a tree out of my window

8. Distraction

When you are physically in pain, or feeling poisoned it easy to get focused on the horrible physical sensations.  A good way to counteract this tendency is to distract yourself.  Instead of focusing on the pain, brain fog, exhaustion etc. do something pleasant.  Obviously you are limited by your physical ability.  Here’s a few suggestions I use:

• Watch a film (a feel good Rom. Com. or Comedy are best),
• Listen to an audio book,
• Lie in the sunshine,
• Read a book,
• Chat on Facebook – I generally can’t cope with too much face to face interaction when I’ve got PEM, but I find facebook is a great way to ease  social isolation

The Optimum Health Clinic suggest making a first aid kit for bad days.  This could include your favourite film, book, music, phone numbers of people who can cheer you up, quotations that you find helpful etc.  The idea is that if you put all this stuff together on a good day, then on a bad day you’ve got a box or resources which are going to help you.

9. Epsom Salt Baths

If you’re well enough for a bath, then an Epsom Salt Bath can really help PEM. Bathing in Epsom Salts can ease aching muscles, help your body’s detoxification process and lower stress levels.  Here’s a great post from  SCD lifestyle which explains the benefits and what to do in detail.  Don’t get too hung up on having the perfect bath though; it’s better to do it imperfectly than not do it at all.

These are my coping strategies.  Do you have any other ways to survive PEM? Please share in the comments below if you’ve got any helpful suggestions.