Category Archives: my experience

Marvellous Magnesium

Magnesium Infographic from Ontario Health

Magnesium Infographic from Ontario Health

In my Supplements post I briefly mentioned that I’ve found Magnesium really helpful.  I want to sing it’s praises a bit more in this post.

Magnesium in the body

Magnesium is crucial to many reactions in the body ,in particular those involving energy production in our mitochondria.  Dr Myhill gives an excellent explanation of Mitochondrial Failure in ME/CFS here.

According to MedlinePlus

Magnesium is needed for more than 300 biochemical reactions in the body. It helps to maintain normal nerve and muscle function, supports a healthy immune system, keeps the heart beat steady, and helps bones remain strong. It also helps regulate blood glucose levels and aid in the production of energy and protein.

Magnesium is crucial to our health, and yet many people are deficient in Magnesium.

Causes of Magnesium Deficiency

Our diets may not contain sufficient magnesium.  If you are eating lots of processed foods you are unlikely to be getting sufficient magnesium in your diet.  However, due to magnesium depletion in our soils even someone eating a whole-food diets may struggle to get enough magnesium.  The table below shows the decrease in magnesium in a British analysis of various foods between 1960 and 1994.

Another common cause of magnesium deficiency is malabsorption. If you have a damaged gut (e.g. IBS) even if you are eating enough magnesium you may not be absorping it into your body efficiently.

Other causes are medications which prevent/reduce magnesium absorption and alcoholism. Additionally flouride, found in toothpaste and some drinking water, may bind to magnesium and prevent absorption.

Blood Test for Magnesium Deficiency

If you’ve been diagnosed with ME/CFS you’ve probably had a lot of blood tests to exclude other diagnoses.  One of these may well have been serum of magnesium, which probably came back “normal”.  However,

 only 1 percent of magnesium in your body is distributed in your blood, making a simple sample of magnesium from a serum magnesium blood test not very useful.

Most magnesium is stored in your bones and organs, where it is used for many biological functions. Yet, it’s quite possible to be deficient and not know it, which is why magnesium deficiency has been dubbed the “invisible deficiency.”


Dr Myhill has an excellent article on Magnesium deficiency in CFS/ME.  She recommends magnesium injections.

Ways to Increase your Magnesium:

1. via diet.  Eating magnesium rich foods such as spinach, chard, pumpkin seeds, almonds, black beans, avacado, figs, dark chocolate and bananas.

2. Epsom Salt baths are a relaxing way to absorb magnesium through the skin.  However, I found that although this helped my restless legs, it was not fully effective (I think I wasn’t getting enough magnesium this way).

3. Magnesium Oil: You can buy this in health food shops and spray it on your skin.  I have been experimenting with natural deodorants, and found this effective, so I spray it on my underarms and also on particularly achy muscles – usually my calves – before I go to bed.

4. Supplements: I have taken magnesium citrate and magnesium taurate.  The taurate was suggested by my nutritionist because of hormone imbalances.  I started taking the magnesium as a temporary solution to constipation and noticed that my restless legs stopped, my muscles ached less and I was sleeping better, so I stayed on it.  Recently I experimented with removing it, but my symptoms returned, so for now it’s staying.  I’ve also noticed since starting my training for the Coast to Coast cycle ride that on days with lots of physical activity it is helpful to me to increase my dose of magnesium citrate.

5. Magnesium injections:  This is what Dr Myhill recommends, but I haven’t used this method.  It may be worth raising with your GP to see if they will do this for you.

Can I overdose on magnesium?

Theoretically yes you can.  However  Dr Myhill says she has yet to see a red cell magnesium level that is too high and my nutritionist told me that I could safely take my multi vitamin containing some magnesium, magnesium citrate and magnesium taurate, and also have an epsom salt bath whenever I wanted.  I did not start using magnesium oil until after I had reduced my multivitamin and magnesium citrate and stopped taking magnesium taurate.

If you have kidney problems then you should be careful with magnesium supplementation, as in healthy people the kidneys get rid of excess magnesium.


Magnesium supplementation in various forms has really helped me, and is one of the few supplements I’m still taking.  If my experience resonates with you, then why not try increasing your magnesium intake?  You could start slowly by having epsom salt baths and increasing magnesium rich foods in your diet, although if you have a damaged gut you may not absorb magnesium from food efficiently.

If the epsom salt baths help, but don’t totally alleviate the symptoms (for me key symptoms were restless legs and muscle aches) then you may wish to consider oral supplements or talk to your GP about injections.  If you want to go the injection route I recommend printing out the relevant section of Dr MyHill’s site to show your GP.

Coast to Coast Cycle Challenge

Coast to Coast Route Map

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!


I haven’t written about supplements sooner, because I don’t want people to think they are magic pills which are going to suddenly cure everything.  I believe that you need to be eating the right foods, and make lifestyle changes – such as pacing and meditating, the supplements may then give you a boost.

Before I got ME the only supplement I took was Evening Primrose Oil, which effectively reduced pain/tenderness in my breasts.  This had been recommended by a specialist nurse after I had a mammogram.  I ate relatively healthily, and didn’t see the need for other supplements.

After I got PVF, I was feeling so rough that after a few weeks I started researching what I could do to help myself.  It was at that point that I found the website  I also came across the book Natural Energy by Dr Erika Schwartz an Carol Colman, and also From Fatigued to Fantastic by Jacob Teitelbaum.  Based on what I read I began taking the following supplements:

  • Fatigued to Fantastic Energy Revitalization System – half a scoop a day
  • D Ribose 5 g morning and evening
  • CoQ10 150mg
  • L-Glutamine 1500mg
  • L Carnitine 1000mg
  • Evening Primrose Oil 2000 mg per day
  • Viridian Licorice Root 1 capsule

After a few months I began to consult my Nutritional Therapist.  Over the time I consulted with her we changed my supplements several times. Here is the list of everything I remember taking under her direction.  These were not taken all at the same time.  Sometimes I stopped one tablet and replaced it with another.  At other times the importance of taking taking two supplements together was stressed.  Where I can remember that information I’ve included it here.  However, please note that throughout most of the time I was consulting with my nutritional therapist I had brain fog and very little energy, so my memory is not great!

  • Solgar Energy Modulators  – 2 capsules per day
  • Nutri Adrenal Extra (not taken with Solgar Energy Modulator) 2 tablets per day before 1pm.
  • Nutrigest Pancreatic Enzymes (always taken with probiotics)
  • Udo’s Choice Super 8 Probiotics
  • Pukka Herbs Ashwaganha & Shatavari (instead of Nutri Adrenal Extra)
  • Higher Nature Valerian Sleep aid
  • Biocare Multi One a Day Plus (vitamin and mineral supplement instead of fatigued to fantastic powder)
  • Biocare Magnesium Taurate
  • Magnesium Citrate

I am not advocating that you go out, buy all these supplements and start taking them immediately.  I’m not qualified to give advice on what you should take, all I can do is share what I took and what I think helped me.  If you’re considering taking supplements you need to be aware of possible interactions between different supplements or and/or your prescription medication.

Nutri Adrenal Extra

The supplement that I noticed the most direct benefit from, and felt worse when I stopped taking it was Nutri Adrenal Extra.  I initially took this for 1 month, after a saliva test showed I had adrenal fatigue. I saw noticeable improvements within two weeks, particularly in my sleep.  After 1 month, on the advice of my nutritionist, I tried to stop taking Nutri Adrenal Extra and replace it with Ashwagana and Sharavari instead.  I noticed my symptoms and sleep worsened and after consulting with my nutritionist we quickly swapped me back on to the Nutri Adrenal Extra.  I took this for about 18 months in total, before gradually reducing my dose and removing it altogether.


Magnesium also made a huge and noticeable difference to my symptoms.  It really helped my restless legs, muscle pain, constipation and sleep. I am still taking magnesium citrate tablets, having recently experimented with removing them only to discover that my restless legs  and constipation returned.

Current Supplement Regime

As my health has improved I have steadily decreased the number and quantity of supplements I’m taking.

I am currently taking:

  • 500mg Evening Primrose Oil (reduced from 2000mg)
  • 1-2 tablets of Biocare Multi One a Day Plus.  I experimented with removing this, but have decided to add it back in.
  • Magnesium Citrate – 1 tablet per day

I also ensure I eat or drink probiotic foods daily: homemade yogurt, kimchi and/or kombucha, to replace the probiotic tablets I used to take, and I still pay close attention to my diet to ensure I get a nutrient dense diet.







When I was in the first stages of my PVF/ME/CFS I can remember having an internet discussion with another sufferer about recovery.  Neither of us knew how far we would recover or how long it would take, but we both desperately wanted to believe it was possible.  I remember thinking that any improvement in my health would improve my quality of life, and I have experienced that all the way through my recovery.

When I was reliably able to pick my kids up from school on my electric bike it was great.  When I was able to shower regularly it was fantastic.  When I could cook meals for my family it was marvellous.  When I started this blog it was wonderful,  when I was able to walk to the end of my road it was amazing. When I was able to go to go on a cycle ride with my family it was fabulous.

Last summer I made some huge improvements, and anyone looking at me would not have known I had ME/CFS.  However, I still felt it was there, lurking.  I still had to be careful about my activity levels, plan activities, say no to a few things and disappear for rests.   This was still the case at Christmas, when I wrote that I was prioritising activities and had declined some invitations.

However, since early in the new year I feel something has shifted.  Now I feel fully recovered.  I don’t feel I have to work around my illness.  I don’t think about it.  I just get on with doing what I want to do, when I want to do it.

I do still take care of myself.  The last 3 years have taught me that’s important.  I’m still doing my Miracle Morning, and I still sometimes rest during the day if I have a busy evening ahead, but that’s because it’s sensible, not because I can’t cope with the evening without resting in the day.

This week is half term and I’ve been having fun with my family.  First was a busy weekend with my siblings and their families, then a day at the Tower of London (lots of standing and walking).  In the lovely February sunshine I’ve done some gardening and played basketball with my son.  Two friends saw me on the basketball court in our village and they looked surprised, but I knew I could run around with my son, come home and carry on with the rest of my day.  No PEM, just a few aches from playing basketball for the first time in years!

So for me that’s what recovery looks like.  It’s feeling healthy again, and just getting on with life.  It didn’t happen overnight, in fact it snuck up me so gradually that I can’t tell you exactly when it happened, but I can recognise the difference.  I’m recovered.  I believe it’s permanent, but only time will tell if I’m right about that.

If you’re in the early stages of the illness, focus on resting and pacing and when you reduce your activity enough you will stabilise, and from there you can improve.  If you’re in the later stages of recovery then keep doing what you’re doing, and tweak when necessary until you reach 100% recovered.

Recovery is possible.



I See You

2015-02-10 09.25.26When I was at a really low point with my ME I can remember lying in bed, crying, and saying to my husband “I don’t feel like me any more”.

I have a really clear recollection of my husband’s response to this. He leant over me, looked right into my eyes, as if he was looking deep inside me, and said “I see you”. He said other things after that along the lines of “You are still here, you are in there, you are still you” – I can’t remember the rest of it exactly, but even after 2 years I can still clearly remember how it felt when he looked into me and said “I see you”.  This simple but powerful gesture helped me get through that low point, and also helped me at subsequent points in my illness/recovery.

At the time I felt like the very essence of me was lost. I didn’t have the energy to carry out the simplest of daily tasks, couldn’t spend much time with my family and hadn’t been well enough to see any friends for weeks, and worst of all was the brain fog and dizziness that meant I couldn’t even think properly or hold a decent conversation. It reassured me that somehow (and I still don’t know how) my husband could still see the woman he married. His belief that I was still in there gave me hope and made me realise that even though I didn’t feel very loveable at the time, I was still loved.

Today I’m back to being me. I have my energy back, I can think clearly and I’m doing things I love. So when you’re feeling low, remember you are still you, you are in there and


The photo accompanying this post was taken on a lovely walk I took along the river this morning, whilst the ideas for this blog post were settling in my mind.  The weather may be grey, but I am thankful to be well enough to walk in nature again.

Fermented Foods

2015-01-26 09.38.15I’ve been experimenting with various fermented foods over the last few months, and I’ve decided it’s time to share my results.

I’ve already written about my homemade yogurt and kombucha, which are both fermented foods.  This post focuses on my experiments fermenting vegetables.

There is a lot of science involved in the fermentation process, and, for me, some understanding of that was important to success.  I wrote a post called Cabbage Juice Stinks after my first unsuccessful experiment with fermenting cabbage.  I still shudder at the memory of that smell, and it put me off fermenting vegetables for a good while.  However, I continued to read about the benefits of fermentation, and plenty of food/health bloggers extol the virtues of foods like sauerkraut and kim chi.

I tried making sauerkraut following this recipe .  I was unsure about a recipe that called for me to scrape the mould off the surface of the ferment.  Further reading validated my doubts.

scraping off the mold leaves it’s roots behind, and ingesting this can end up causing problems in the long run. Nourishing Traditions

Apart from the mould, the other problem with this batch of sauerkraut was that it was so salty it was inedible – another unsuccessful experiment.

When I came across this fabulous set of articles testing fermentation vessels and read the detailed information about fermentation by Lea Harris of Nourishing Traditions, I understood where I’d gone wrong in my previous attempts : not keeping out oxygen.  This gave me the confidence to try fermenting again. First I bought a Kilner Jar (known as Fido Jar in the US and in the Nourishing Traditions articles).  This would allow me to keep the oxygen out of my ferment, and hopefully lead to success.  When it came time to set up my ferment I decided on Kim Chi.  I happened to have a red cabbage on hand and this led me to a recipe by Garden Betty.

The results from this have been a success.  I adapted the recipe, by leaving out the red pepper powder and daikon because I didn’t have any and I had no idea where to buy any.  I’m happy to say the other flavours in the recipe led to a tasty jar of fermented vegetables that my husband and I add to our plates regularly.  The kids turn their noses up at it, and complain about the smell, so I mainly eat it at lunch time when they are at school.  It’s a great low effort way to add additional vegetables to my meal.

Red Cabbage Kimchi  (Adapted from Garden Betty’s recipe)
Makes 3 quarts


2 pounds red cabbage, chopped
1/4 cup salt (I use sea salt)
1/2 pound carrot, julienned
6 spring onions, sliced into 1-inch segments
4 cloves garlic, minced
1-inch piece fresh ginger, peeled and minced
1 small pear or apple, peeled, cored and chopped
1 small yellow onion, chopped
dechlorinated water – amount varies
2 tablespoons fish sauce


  1. Chop the cabbage into thin, bite sized pieces (I use my food processor for this)
  2. In a large bowl, massage the salt into the cabbage until the leaves start to release liquid.
  3. Cover with water and let the cabbage sit at room temperature for at least two hours while the salt draws out moisture. Periodically toss the cabbage and work your hands through the leaves to expel more moisture.
  4. After about two hours, the cabbage should be soft and limp, and the volume reduced in half. (If yours is still firm and full, come back to it after another hour or two.) Strain the cabbage and rinse under running water to remove excess salt. Strain again, then return the cabbage to the bowl. Add carrot, green onions, garlic, and ginger.
  5. In a blender, combine the pear (or apple, if using), yellow onion, water, and fish sauce, and give everything a whirl until smooth. Pour the sauce over the vegetables.
  6. Put on some gloves (the sauce can be pretty spicy and smelly to work with!) and give the kimchi a good rubdown, making sure the veggies are well combined and coated with sauce.
  7. Pack the kimchi into kilner jars, leaving 1 to 2 inches of headspace. The veggies will expand and release more liquid as they ferment, so you don’t want to overfill the jars. Tamp down the veggies with the back of a spoon to fully submerge them. I found that there was enough liquid in the jars to keep them submerged, and since the liquid is more of a paste, the veggies don’t float to the top as in other ferments.
  8. Wipe the rims clean, then seal the jars and let ferment at room temperature, out of direct sunlight, for at least about 2 weeks. (It wouldn’t be a bad idea to place the jars in a shallow baking dish to catch any overflow of liquid.)Every day, press down on the veggies with a spoon to expel more liquid and make sure everything is shipshape. A proper ferment should have no mold and no off smell. 


My Miracle Morning

sunriseOn 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.



Virus or Relapse?

This week I’ve been dealing with a cold/cough – a lovely gift from my husband.  Last week he had a cold and came home from work early, went to bed early and generally didn’t want to do much.

This week it’s my turn.  It’s easy to catastrophise about set backs like this.  It’s harder to sit back and see the big picture. I want to focus on the negatives:

  • I have less energy,
  • my nose and eyes are streaming,
  • I’ve got a hacking cough and can’t breathe properly,
  • I’ve had to go to bed at 7.30pm more than once this week,
  • My body aches,

However, the truth of the matter is these are all totally natural things to feel when you’ve got a cold virus.  Actually I’ve been doing really well.  I’ve been listening to my body and (children permitting) resting when I need to.  Despite my cold I’ve still managed to:

  • keep the family fed (and that includes lunches because it’s half term),
  • Keep on top of the washing,
  • Sort out a load of old toys to give away,
  • Digitise some recipes which have been hanging around for months,
  • Write this blog post,
  • Ride my bike around the village,
  • Take kids to activities, or friends houses and have their friends here.

Although I feel worse than usual, I think I’m still able to do more than I could on a good day 6 months ago.  This is not a relapse, it’s a normal reaction to a cold and that’s fantastic.

Since it was a cold virus that sparked my ME I’m not sure I will ever feel relaxed about “just” having a cold.  However, I’m in a different place now, and I seem to be reacting like a healthy person to a virus, which is a reason to celebrate.

Life with ME/CFS

I haven’t written much about what ME/CFS has been like for me.  I meant to write it as one of my first posts.  I described My crash and what life was like before the crash, but I  then got straight into writing about food and haven’t written about what life was like after the crash.

I’ve thought about writing this post for a long time, but I know I’ve been avoiding it. Hopefully it is a sign of my confidence in my recovery that I am writing this now.  I am sharing this information because I know there are people who will say that because I’ve recovered I didn’t really have ME/CFS.  Let me tell you – I did.  Not only do I have an official diagnosis.; meeting the CDC criteria (scoring on 7 of the 8 symptoms), but also meeting the more stringent Canada Working Case Definition, but my life was turned upside down and it has taken a lot of effort and time to recover.

Here’s a snapshot of what daily life was like for months and months and months:

  • brushing my hair made my arm ache and fatigued me.  On bad days I had to get someone else to do it for me.
  • Washing my hair, even lying down in the bath would leave me drained for the rest of the day
  • I have done the school run in my PJs on numerous occasions (I bought black PJs so they would look like trousers) because I did not have the energy to get dressed and get my kids to school.  My husband used to get them ready for school, get my electric bike out of the garage and near the front door and I would ride (under electric power) to school, home again and then rest.
  • There were also plenty of days when I couldn’t manage the school run at all and had to rely on my husband or friends to take/fetch the kids.
  • I couldn’t dress myself all in one go.  I had to put on a garment then lie down and recover before I put the next one on.
  • I needed at least 4 rests of 30-60 minutes each day just to have energy to be in the same room and speak to my family.
  • I couldn’t stand up long enough to have a shower for 18 months.
  • I used a wheelchair, mobility scooter or electric bike to get around outside the house.
  • I couldn’t follow a recipe due to my brain fog.
  • I found socialising exhausting, even with close friends and family.
  • I would often lie on my sofa feeling hungry or thirsty, but not have the energy to get up and get myself food or drink.
  • I couldn’t read a book for over 9 months, and then gradually I started to be able to read for short periods.
  • I couldn’t watch a film in one sitting, I would need a rest (or sometimes 2) in the middle.
  • I couldn’t take in information – e.g. trying to read the instructions and apply for a school bus pass for my son was impossible.
  • Sitting or standing made me feel dizzy and lightheaded.  I had to spend most of my time lying down.
  • Hours would pass in my cloud of brain fog.  I can remember someone telling me they would be bored sitting at home all day.  My response: “I’m too ill to be bored.”
  • My sleep was disrupted.  Sometimes I would get to sleep OK, but wake up really early, sometimes I wouldn’t get to sleep until the early hours, and sometimes I would wake up in the middle of the night.

Hopefully these bullet points give you a snap shot of how I was affected.  It’s so hard to describe this illness, because it affects all your bodily systems and the symptoms are so varied.  But if you’re going through it yourself at the moment then you will probably see some similarities.

Today my life is very different to this.  If you are reading this and identifying with it, then please know that it doesn’t have to be like this forever.  Things can improve, and every small improvement in your physical and mental stamina brings about massive improvements in the quality of your life, as you are able to spend more time with the people you care about and get out and about doing what you love.

Remember: “Things Get Better” Katie Piper




In my post What causes damage to our gut? I touched on how antibiotics can damage our gut bacteria. Unfortunately my GP has just prescribed a weeks worth on antibiotics for me, so I’ve been researching what I can do to … Continue reading