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Yearly Archives: 2017

Keeping an eternal perspective

praise you in this storm

I absolutely believe that we are safer with God in any storm than we would be anywhere else without Him.

It’s hard when you focus on the pain and suffering in this world or even your own personal trials to remember that this is just a fraction of eternity. This will eventually pass, it is only a temporary part of your life.

Keeping the eternal perspective allows you to see how small and temporary every trial is in the larger picture.

That doesn’t mean that it doesn’t hurt or doesn’t scare you or make you feel helpless at times. It just means that you will never lose hope because you know that this too shall pass.

There have been a few occasions since the onset of my ME/CFS that I have broken down from frustration and utter physical weakness. I’ve even had a few panic attacks, and every time I have a breakdown or meltdown, I remember the first one because it was incredible.Continue reading

MAIMES: Medical Abuse in ME Sufferers

As anybody with ME/CFS and their carers will know, many doctors and health care practitioners still treat ME as a psychological disorder, when in fact it has been proven to be physiological. Patients have been dismissed for decades, disbelieved, misunderstood and symptoms ignored.

The current treatment recommended for ME/CFS patients is CBT (Cognitive Behaviour Therapy, a type of psychologically based talk therapy) and GET (Graded Exercise Therapy, a controlled exercise program). This came about due to findings that came out of the PACE Trial which has been reviewed recently and found to be based on flawed principles. The whole trial was unscientific and skewed, not at all a sound basis for deciding how to treat ME/CFS.

Nonetheless, the PACE trial has formed the basis for the NICE (National Institute for Health and Care Excellence) guidelines which medical practitioners have been using for years as their basis for treating patients with ME/CFS.

The CBT and GET treatments both cause harm to patients. CBT can make some patients believe they’re causing the problem by erroneous thought patterns or not trying hard enough, while GET absolutely makes patients worse if they are forced to push beyond their limits.

The very nature of this illness is the intolerance to physical, mental and emotional exertion, these treatments only stress patients in those areas and do not at all address the underlying causes or physiological abnormalities in the patients’ bodies.

The abuse is not limited to patients, but even the few doctors that might try to help them in ways that have proven to actually improve the patient’s condition! The General Medical Council (GMC) has even targeted and prosecuted any doctors that try to use unconventional methods that are not in the NICE guidelines, the very guidelines which are based on the flawed PACE Trial.

MAIMES is a campaign to get as many Mps as possible to sign up to demand an inquiry into the continued abuse of ME/CFS patients over the years.Continue reading

ME/CFS Awareness, 15 Nov 2017

ME Awareness Hour

As you might know by now, I spend every Wednesday evening on Twitter, along with many other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening.

We tweet about what life is like with this life draining illness. We tweet and retweet for an hour, hoping to to make our hashtags trend on the front page of Twitter so we can get the most attention possible. I hope you will join us, even if you only retweet other people’s tweets, every bit helps!

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Bullet Journal: When time passes you by

Empty Bujo spread

Have you ever opened your journal to find you’ve skipped a whole week of your life? I did that today. I was expecting to open my journal to the next clean page, so I could set up this week’s spread and discovered that last week’s spread was still completely empty. Not only was is empty, but I hadn’t even finished setting it up!

If you have a chronic illness, you can probably relate. Flares can be so draining that you don’t even manage the simplistic of tasks like picking up your book to read, or opening your journal to see what’s on your to-do list. Partly because the book is just too heavy and partly because having things not ticked is hard to accept sometimes. We don’t like all those lists of undone tasks.

So whole weeks can pass you by while you rest and wait for your body to do whatever incredible tasks it is doing to recover and heal from that one thing you shouldn’t have eaten or that one thing you shouldn’t have done last week.

In my case one week had passed, to the day. Instead of trying to fill in last week’s spread, an impossible task as memory loss is a super dominant symptom of mine at the moment (clearly), I’m going to just use last week’s spread for this week. I had filled in last Wednesday with some things that needed doing, but I hadn’t even done them all, so I’ll just continue from there as if that list was for today. Problem solved.

I honestly feel a little proud of myself, because things like this would really upset me prior to falling ill with ME/CFS. Every time I messed up on my schedule, didn’t do something on my list or ate the wrong thing while on a specific type of diet, I’d just get so upset with myself and end up quitting or redoing everything from scratch as if it was the plan that was flawed.

In reality, as I’ve since learned, I am the one that is flawed – we all are – and we will make mistakes and fall off the wagon from time to time, and that’s okay. The key to success is getting up and carrying on every time you do. So this is me getting up and moving forward despite having skipped an entire week in my journal.

I was always trying to play catch-up with my own life, trying to rectify mistakes before moving on. Now, when I drop the ball, I let go of what I’ve dropped and move forward from there. It’s a much less stressful way to live.

Over to you (answer in the comments below)

How do you handle skipped days or weeks in your journal or planner?
Do you also feel like you’ve failed when you don’t get everything on your list done?
How can you be kinder to yourself when you fall off the wagon or drop the ball for whatever reason?

Recipe for Fat Head, Keto Pizza & Toppings

Keto Pizza Recipe

Can you really have a movie night without a pizza? For months after I had transitioned to keto, I didn’t have any pizza. The crusts are loaded with grains which just don’t work for the ketogenic diet, so I was very happy when I stumbled upon this recipe. When I tasted it for the first time I almost cried. This recipe is flop-proof and tastes so good!

The recipe I’m sharing here is the one my mum uses to make my pizzas, it originally comes from the Fat Head movie’s website. It’s basically just the recipe for the base that’s from Fat Head, but I will also share our recipe for the sauce and some topping ideas. You will need to prepare any toppings ahead of time as the base is cooked separately and then will be topped with ready cooked toppings.

Fat Head Keto pizza base

Fat Head Keto pizza base

Fat Head Pizza Base

Makes 8 slices, each approx: 141cal | 3g C | 11g F | 8g P

  • 1 and a half cups grated mozzarella
  • 3/4 cup almond flour
  • 2 tbsp cream cheese (soft cheese in the UK)
  • 1 egg
  • garlic salt
  • parchment paper and cookie sheet

Instructions

  1. Melt mozzarella and cubed cream cheese in the microwave – heat on high for 1min, then mix and heat again for 30sec, stir again.
  2. Stir in the egg and almond flour.
  3. Wet your hands and spread the dough thinly on the parchment paper, it should be smooth. If it’s stringy then the cheese is too cold, heat in the microwave again for 20sec.
  4. Poke holes in the flattened base with a fork.
  5. Sprinkle garlic salt (or regular salt and herbs of your choice)
  6. Bake in the oven at 220*C for 8 min, check it and poke any bubbles with a fork and continue baking for a total of 12-14min or until slightly brown on top.
  7. Top with ready cooked toppings (prepare these in advance) and return to the oven to heat up and melt the cheese to your liking.
non-stick keto pizza base

Tuna and onion pizza, doesn’t stick to the paper

My mum follows these instructions and it comes out perfectly every time. I hope you enjoy your keto pizza as much as I do!

Tomato Sauce for Pizza

To cover 8 slices, each approx: 10cal | 1g C | 0.6g F | 0.2g P

  • 1 tsp coconut oil
  • 20g onion
  • 1 clove garlic
  • 100g unsweetened Italian chopped tomato (usually comes in a jar, carton or tin)
  • salt and pepper to taste

Instructions

  1. Fry the onions and crushed garlic in the coconut oil
  2. Add the tomato sauce, salt and pepper and cook until boiling point, then simmer for a few minutes so flavours combine.
  3. Set aside until base is cooked and ready to be topped.
  4. Spread over pizza base before adding your favourite toppings
Chicken keto pizza

Chicken, onions and bell peppers

Pizza Topping Ideas

Remember to calculate your macros for the toppings, if spread out evenly you can calculate approximate macros for each slice by dividing total macros by how many slices you have cut or eaten. Not all these ideas are low histamine, check your histamine list to avoid your  personal triggers.

  • Chicken and bell peppers
  • Bacon, feta and mushrooms
  • Tuna with capers, onions, yellow bell peppers or olives
  • Thinly sliced and grilled aubergine, courgette and bell peppers
  • A combination of different cheeses (mozzarella, feta, cheddar, gorgonzola, spicy, sweet, etc)
Bacon and vegetable keto Pizza

Bacon and vegetable pizza

I hope these recipes and ideas will help you enjoy your keto journey even more. Please let me know in the comments below if you’ve tried any of these or have discovered any amazing toppings you’d like to share. Buon appetito!

The Fat Head Movie

Visit the Fat Head website (click here) or watch the movie (click here).

Life is like a twisting roller-coaster ride

It’s easy to get caught up in all the negatives that happen in life. Things don’t go your way, you fall ill, you lose people or your job, you feel sick, there are just so many things that can bring us down, but this is just part of life.

The minute we stop expecting life to be a fairytale and accept reality, that’s the moment we open ourselves up to the truth and the freedom that comes with it. It’s hard to expect perfection at all times. It’s hard on ourselves and on those around us. Nobody can live up to that expectation. Life doesn’t work that way.

There is no normal or perfect apart from God, there is just life and it is filled with good and bad, daily. It’s a constant flow, like your laundry and dishes… You fix it once, but soon there will be more. It’s a part of life, why do people act shocked and surprised that they have to deal with it over and over again. Accept it, embrace it and experience the freedom it brings to no longer go through life in those chains of, worry, disappointment and resentment.

Life isn’t a flat line, it’s not linear, it’s a messy, twisting and turning rollercoaster ride. Some parts are fun, others are terrifying, sometimes you’re heading forward and then there’s a sharp turn and you feel like you’re going the wrong way and everything is upside down. But it’s all part of the ride, you’re still going towards the same general direction, it’s just not ever going to be a boring, predictable straight line.

Look at the stars

Focus your gaze on the good things each day brings. Focus on being grateful for all the small things people so often overlook.

The positive words, the beautiful view, the comfort and protection of your home, the smells, sounds and colours around you. The people God has brought into your life whether in person or online.

You are not alone in your struggles, but focusing on your struggles can make you feel very lonely. Take your eyes off yourself and your hurt, give yourself a break, focus on the good stuff. It’s not going to make the struggles go away, but it will certainly make your experience of life more enjoyable and rewarding.

Here’s a little exercise that really brought this point to life for me: If you hold your arm up and make a fist. Your fist represents you problems, you can see your problems, but you can also see the room (life) around it if you look around your fist.  But if you bring your fist right up in front of your nose, staring at it, so it is the only thing you’re focusing on, the rest of the room gets lost behind it as the closer it gets the bigger it seems. It’s not really got any bigger, it only seems like it because now it’s all you’re looking at, it’s what you’ve chosen to pull close and focus on.

Focus on good stuff

You might not have a choice when it comes to your circumstances, but you do have a choice when it comes to what you spend your time, energy and focus on within those circumstances. Try your best to focus on the good stuff!

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. 

This is what I’ve been going through the past couple of weeks. I initially thought I had a flare from my histamine overload and coming out of ketosis, but I’ve been back on the wagon for over a month and I’m just not getting better, some days even much worse. 

I’ve learned to accept what is, though I still shake my head at the bizarre symptoms that pop up every day. 

This week the main and most prominent symptom, apart from the increased exhaustion and pain, is the heart racing. 

I’ve moved my Fitbit back onto my wrist as I’m going to stop focusing on my step count (which is affected by arm movements, hence moving it to my ankle previously), and I’ll start focusing on my heart rate instead.

It is well documented that people with ME/CFS can pace effectively by monitoring their heart rate and staying within their personal limits. Mine, it turns out, are the same as an 89 year old! (I’m really only 36)

And during this current flare, my heart rate is almost constantly in my fat burning zone (supposed to be for moderate activity) even while resting in bed. When I stand up, go to the loo or brush my teeth it shoots into cardio zone, sometimes just turning in bed or lifting my head off the pillow can have the same effect!

A couple of days ago it shot right into peak zone at 130 from simply brushing my teeth (way past my personal threshold of 92)!


I’d love to know how a healthy person’s heart rate responds to these simple activities. 
Needless to say, I’m not getting much done as every little thing pushes my HR up so high and I feel awful until it settles again.

The slowing down of my heart rate can take quite a while sometimes, and other times it comes to a super rapid screeching halt and feels awful in my chest!

I haven’t figured out patterns yet, but all I know for sure is it helps to take note and behave accordingly, since I started paying attention to HR, I have been able to avoid awful going-to-pass-out moments that I was having up to just a few days ago.

I also know that right now it would be unrealistic and even detrimental to continue aiming for 1000 steps a day. I just cannot manage it. I occasionally hit 800, but mostly I’m not even checking. 

This November is all about a shift in priorities and definitely a shift in pace. I have been so much more active this summer, and the weather could even be a factor, that it’s of course frustrating to feel like I’m going backwards again.

The important thing to remember is that I’m not going back to square one. I’m just changing difection and waiting for the next gust of wind to push me forward again. 

This is just a season and it will pass. My aim now is to pay close attention to my body, the signals and the reactions, so that I can adjust and adapt to this new normal as soon as possible so I don’t accidentally  cause more damage. 

Another sign I’m flaring quite badly is that it’s only 10 pm and I am falling asleep! My usual bed time is between midnight and 1am so this is super early for me. I was already dozing around eight, but I’m trying to keep to my regular schedule else I risk causing sleep disturbances or even insomnia. I don’t want to go back to that.

Routine and structure are important. My brain is switching off now, the fog is coming so I’ll end this here for now.

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 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 Flare

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

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