What does ME feel like?

Tuesday, 12 May 2015

Today is International ME Awareness day. Inspired by Action For ME's thunderclap awareness campaign 'what does ME feel like?' I wanted to give an insight into what ME feels like for me.

Imagine the worst flu you've ever had combined with a head thumping, vom-inducing hangover, whilst feeling like this you've been forced to run a marathon with no training. Each morning you wake up feeling exactly the same (or worse) and have to repeat all over again.

 Unlike flu or a hangover this isn't something that goes away. If someone has ME they are likely to be feeling like this every day indefinitely. Symptoms fluctuate daily and worsen following any physical or mental activity - this is called post exertional malaise (PEM) and is a horrible trademark of the condition. This payback usually hits 1-2 days after the event making it very hard to realise if the activity you are doing is causing damage at the time. For me I can have a worsening of symptoms if I do a few hundred extra steps in a day or read a few pages of a book, for those more severely effected trying to sit up in bed can have knock on effects for days.

I find the overwhelming fatigue very hard to explain as pre-illness I've never experienced anything like it. This isn't 'feeling tired all the time' or even feeling 'knackered' or 'exhausted' which I know I used to say all the time - well now I know the true meaning of the words! At my worst I struggle to get out of bed, I physically cannot find the energy to move my arms or legs, it feels like I've grown 10 times heavier in the night and I'm unable to move myself. This feeling continues throughout the day, my 'concrete body' as it's become known has to drag itself around the house. Some days getting downstairs feels like an impossible task, other days a short walk outside is my limit. When I think about having to stand up and go to another room it can feel as though I'm being asked to run 10 miles, and then my body aches as though it has done just that.

The fatigue isn't just physical either, I've found it harder to come to terms with the mental exhaustion and reduced cognitive function. Since being ill I have struggled or found it impossible to do mental activity such as reading, writing emails and texts, listening to music or the radio, anything that requires a bit of thinking, even talking some days! Sometimes having a conversation can feel like I'm speaking a different language, having to concentrate so hard on what is being said, effectively translating in my head then working out my response. I struggle to find words and have to stop mid-sentence, I also use completely random words at the wrong time which can often bring a bit of humour to a bad day. All these symptoms are referred to as 'brain fog' and it feels exactly like that.  A hazy, fuzzy cotton wool filled brain struggling with the most basic mental tasks that I wouldn't have even consciously been aware I was doing previously.

As well as the fatigue on a daily basis I'll have flu symptoms, unrefreshing sleep, headaches, dizziness, nausea, heart palpitations, multiple sensitivities (light/smell/sound and food) and heavy aching muscles. For a full list of symptoms have a look at my information page.




Jo x

Coconut Pancakes

Saturday, 9 May 2015

I spend far too much time looking at food on Instagram, waaaay too much time. Pancakes are my latest love and i'll spend many a happy hour marveling over peoples towering pancake stacks. There are loads of gluten and dairy free recipes out there but I found many that I tried were quite tiring to make with lots of fiddly ingredients and the added hassle of having to stand and flip.

So I've created a back to basics pancake recipe that is SO EASY to make, honestly I can be eating pancakes in less than 5 mins when I get these on the go.

The ingredients are also super simple and after a few goes you wont need a recipe at all!



To serve two: makes about 8 pancakes

Ingredients
2 ripe bananas
2 eggs
2 tbsp of buckwheat flour
1/2 tsp baking powder (use gluten free if needed)
2 tbsp of desiccated coconut
2 - 4 tbsp coconut milk
coconut oil for frying

Method
  1. Turn on your oven to a low temperature (this will be used to keep the pancakes warm) 
  2. In a bowl mash the bananas with a fork. Add in the eggs and whisk well. 
  3. To this mixture add in the flour, baking powder and desiccated coconut and mix.
  4. Add 2 tbsp of coconut milk and mix to form a thick batter, add more milk if needed. 
  5. In a frying pan heat 1 tsp of coconut oil then add dollops of batter, about 2 tbsp per pancake. 
  6. When the pancakes start to bubble flip them over.
  7. Store in a plate in your warm oven while you make the next batch
If you are energy challenged like me you may wish to have a quick rest after step 4!

To save time and energy you can also just make one massive pancake - just fill the base of your frying pan with the mixture and you'll have a tasty breakfast in no time.


I'd love to hear if you make my coconut pancakes, happy cooking.

Jo x


Salted caramel porridge with sticky oranges

Sunday, 19 April 2015




Porridge season may be coming to a close but I had to share this recipe with you. I think I may have reached the pinnacle of my porridge making career with this one!

I use dates a lot in my cooking, they develop into deep sticky caramel flavour when heated and are a great natural sweetener. The salt in this recipe offsets the sweetness brilliantly making sure it's not sickly, salted caramel is such a winning combination.

My salted caramel porridge with sticky oranges can be made in less than 5 minutes and is super healthy but tastes oh so indulgent - enjoy!



Ingredients

1/2 cup of porridge oats (I use gluten free but normal are fine)
1 cup of almond milk
1/2 tsp maca (optional)
1 medjool date cut into small chunks (if you have a sweet tooth feel free to use more!)
1 pinch of sea salt
1/2 large orange cut into thin slices
1 tsp coconut oil
1 tsp rice malt syrup (can use maple syrup/ honey etc)

Method

  1. In a pan heat the porridge oats, almond milk, maca, medjool date and sea salt. Use a low heat and stir until thick. Alternatively heat in the microwave - I do this on low energy days! 
  2. Meanwhile in a frying pan heat the coconut oil, then add the orange slices. Turn occasionally until brown. 
  3. Pour the porridge into a bowl, top with the oranges and drizzle with the rice malt syrup
I'd love to hear from you if you give this a go.

Happy Sunday,
Jo x

 
 

Orange, Cinnamon and Raisin Hot Cross Buns

Sunday, 29 March 2015



As Easter fast approaches I wanted to make some gluten and dairy free treats to enjoy! These hot cross buns are really easy to make, made from healthy wholesome ingredients and most importantly taste like the real deal. In my experience, with some gluten free baking it feels like something is missing but these actually taste like hot cross buns!

to make 14 buns

Ingredients:
450g Gluten free bread flour (I use Doves Farm white bread flour)
2 tsp Xanthan gum
Zest of an orange
1 tbsp quick yeast
1 tsp salt
1 tbsp cinnamon
1 tsp ground cloves
1 tsp ground nutmeg
100g raisins
100g currants
200ml plant milk ( I used almond)
150ml water
50g maple syrup
40g coconut oil
2 eggs
50g brown rice flour for the cross
Rice malt syrup and orange juice to glaze

  1. Mix together the gluten free bread flour, yeast, xanthan gum, orange zest, salt and spices in a large bowl. You can also give it all a quick blitz in a food processor if you prefer. 
  2. Add the eggs, almond milk, water, melted coconut oil and maple syrup into the bowl of dry ingredients. mix well. 
  3. Stir in the raisins and currants. 
  4. Cover the mixture with some greased cling film and leave to rise. Mine was in the airing cupboard for 2 hours. 
  5. Preheat the oven to 180'c. Line a large baking tray and grease with coconut oil (or similar) spoon out the mixture into hot cross bun shapes, cover and leave to rise again for around 30 mins. 
  6. To make the crosses mix the brown rice flour with 50 ml of cold water. put the mixture into a sandwich bag and cut a 1 cm hole in the corner - use this to pipe on the crosses. 
  7. Bake in the oven for 20 mins.
  8. To make the glaze heat equal parts rice malt syrup and orange juice until reduced slightly, brush the sticky mixture onto the hot cross buns as soon as they come out of the oven.  

The hot cross buns are best served warm and eaten on the day although they will keep for a day or so in a air tight container. If you do this I'd pop them in a warm oven for a few minutes to heat them through.



I started daydreaming about all the variations I could make... if you give any of these a go please get in touch and tell me how they taste!

  • Cacao and orange
  • Apple and cinnamon
  • Date and pecan 
  • Pistachio and cranberry
These are super easy to make vegan if you are that way inclined - just swap the eggs for some apple puree or other egg replacer. 

Enjoy!

False starts

Thursday, 12 March 2015



I optimistically announced I was starting a blog just under a month ago. I'd had a run of 'good' ME days and managed to get my foggy brain around the basics of Blogger as well as having lots of ideas for future posts. I was really excited as this was the first project I'd been able to get my teeth into since becoming ill and felt a small sense of normality return.

Inconveniently the monster that is ME got in the way. With the wonders of heindsight I did far too much too soon, but it never feels that way at the time. With every physical or mental activity there comes the associated 'payback' and I was completely floored for a week or so. Nervous about recreating the situation I've been holding off until I felt I was in a good enough place to try again. 

This is the side of the illness I find the hardest to come to terms with. I like to plan ahead and ME leaves this an impossible task with fluctuations in symptoms on a daily, evenly hourly basis. I'm getting better at working out how I'll feel the next day from signs the day before but it is still a guessing game most of the time! I'm trying my hardest to avoid bouncing between good and bad days in a boom and bust cycle but it's easier said than done! On a good day who wouldn't want to go outside or pick up a book because for the first time in weeks you can? 

I realise now I approached this blog with my pre-illness head on. I had an outline of my first posts, when I was going to write them, the frequency I would post at etc. I felt the pressure (completely self inflicted!) to keep up with this and became a bit disheartened. Fast forward to now and you'll be pleased to hear I've completely reassessed. I started this blog as an outlet to talk about my illness so that's what I am going to do. Simple. When I have the spare energy to post I will, no big plan of action for the future, no expectations or pressure.

False starts and set backs might be disappointing at the time, but on reflection it's really promising that I feel like I have the energy to give something new a go. Progress is progress no matter how small!

J x



Hello

Saturday, 14 February 2015

Today I had a shower.
For the first time in months I managed to stand up the whole time and do my pre-illness shower routine without running out of energy. It might not sound like a very worthy subject for my first ever blog post but this is big news for me. It's pretty high on the 'achievements of 2015' list so far.

I have a chronic illness known as Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (M.E.) It is a horrible condition that has completely turned my life upside down since I became ill in August 2014. I went from leading a super busy life to struggling to get out of bed in a matter of weeks and I am still largely housebound now.

The last six months have been a hideous blur of feeling really poorly all the time but it's not all doom and gloom - my condition is now stabilising and I have definable 'good' and 'bad' days.  Finally I am starting to have enough brain function to collect my thoughts and begin to come to terms with my new life with a chronic illness.

ME/CFS impacts on my life in every way imaginable. One of the most helpful ways I have found to deal with this is keep a daily journal which documents the ups and downs, life's little victories and how I'm feeling. I've decided to take the plunge and share something similar with you. 

This blog will follow the long and bumpy road of my recovery. ME/CFS is a chronic illness (lifelong) with no cure but many people are able to improve enough so they can lead a pretty much normal life. I have every faith that i'll get there eventually, just probably not as quickly as i'd like!   

Thanks for reading x


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