ME/CFS Awareness, 8 Nov 2017

ME Awareness Hour

I have a date tonight – with Twitter! Every Wednesday evening I spend an hour on Twitter, along with a bunch of other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. You can join in the fun too, we’d love to have more advocates taking part!

We post memes, links to research or media coverage, personal experience, all sorts of things that will help shed some light on what life is like with this debilitating illness. We tweet and retweet for an hour, our hope to to make #MECFS trend on the front page to get the most attention we can. I hope you will join us, even if you only retweet other people’s tweets. Come find me on Twitter at: chronic_hopeful

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Update: current ME/CFS flare is slowing me down

It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue.

You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get over excited about something?

It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. Continue reading

How to set up a macro tracking app for your ketogenic diet, part 2

Keto macros

The thought of tracking macros scares many people into delaying their keto journey, but it’s really not as complicated at it might seem. There are some great tools available that make the whole process so easy.

Also, some people are not aware that you do not need to calculate your macros, you can just wing it and wait for ketosis and fat adaption to kick in. It might just require more patience and it certainly depends on the results you’re after and the results you’re getting from your chosen method.

If your goal with keto is to lose weight, then you could start losing in your first week, simply by switching to the keto approved food list! I would recommend, however, that if you’re aiming to treat ME/CFS or any other chronic illness, like I am, that you track from the start to make sure you become fat adapted as quickly as possible because that is where the ‘magic’ happens.

In Part 1 of this series, we looked at setting goals and calculating your macros. In this second part, we will look at how you can easily track your macros on a daily basis using some very handy apps. I will show you how to set them up. It is way easier than it seems at first!

Part 3 will be about which foods to eat and then in Part 4 I’ll explain how to plan your meals using these tools so you take all the guesswork out of staying within your macro limits.Continue reading

ME/CFS flares: what do they feel like and how to cope

ME CFS Flares, How to cope BLOG

People with ME all suffer at varying degrees, we cannot compare our flares to somebody else’s. What one considers an ME/CFS flare another considers just another regular day with ME. What one person with ME considers a normal day, might be somebody else’s idea of torture. Once thing they all have in common is that everybody’s battle is devastating.

We learn to acknowledge and respect everybody’s pain and everybody’s victories, because despite not fully understanding each other’s experiences, we can all agree on a few things: ME/CFS is life draining, heavy, isolating, painful, lonely, misunderstood and just plain horrible to deal with. And none of us would ever choose to have it or wish it upon our worst enemy.Continue reading

ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour

Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.

I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading

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