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

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

  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

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