Ordinary Miracles (severe ME week)

Today, for the first time in months, I have been able to put on some make up and leave the house. I had something to celebrate: my youngest has turned 5 today! I'm proud and grateful on a day like today. Proud of those 4 wonderful children who -each in his/her own way- make the world a better place and find their own unique path. Grateful and honored for being their mum. I still think it's a miracle, even though science can explain and downtalk it all: a baby is a miracle. Having (receiving!) children is a miracle, even when it happens millions of times a day, all over the world! And becoming a mother has been the greatest gift of my life. (Did you know I used to think I wouldn't be able to have any children? Even when I was very young, I was convinced I wouldn't ever be a mum. That's probably the main reason why I néver take my children -or ány children!- for granted).

When you're this severely ill, every minute you can spend with your kids is extra valuable. During flare ups, I go through terrifying moments, where I'm wondering if I will live through it. Or hów I will live through it (what if I stay in this flare up and go to the last, most severe state of ME/cfs? Then I won't be able to talk to my kids...do nothing....). When you struggle with these kind of problems, you realize even more how much your children mean to you.

All of that is in the back of my mind on a day like today, and the days before, when I'm preparing myself for a couple of hours of sitting at a birthday table and a piece of (store bought 😱!) birthday cake. This requires meticulous planning, by the way. It's a side of ME/cfs that not many people realize. It's something that lives in the heads and hearts of every severe ME patient: "How long will I be able to do this?" Because every flare up will cause an aggrevation. And with every aggevation, we will have to hand in an other piece of our lives. We loose a little every day!

But on the outside we look perfectly normal. I'm stil shocked how on earth that is even possible! Maybe that's a miracle too: the power of our body's. That will do everything necessary to keep us alive and try to follow in whatever we tell it to do. And it worked: I have been able to celebrate my dear son's birthday! And I hope and pray I'll be able to do that for many many many years to come!

Healthy Cooking & Chronically ill

It's one thing to have a chronic illness, it's another to take care of yourself and your family at the same time. I find myself in a constant battle between what my body needs and a total lack of energy to be able to give it just that. And then there's my children, who of course wouldn't mind so much to eat fries and pizza every day, but with whom I don't want  to take any risk of future illnesses so I want to feed them right.

It's a strange thing: I'm a professional life- and health coach. My job was helping people to start or maintain a healthy lifestyle. No matter the circumstances: food allergies, health issues, budgets...you name it. Ofcourse, that expertise had started becáuse of my ME/cfs. It had forced me in the past to find out all about the health and food connection. But now I'm in a bad flare up, I sometimes wonder how on earth I can manage to put something healthy on the table today.

My answer is: choices, planning and prepping. I consciously choose to give my children fastfood sometimes. But then I choose the least damaging of the "bad stuff". For me, I know I really get sicker if I do that, so if I want to have an easy way out, I take something from the freezer.
And that's where the prepping and planning comes in: when I know I'm going to cook something, I plan around it. No other activities for that day. And then the cooking: always in big batches, so I can keep the leftovers in the freezer for the bad days.

I made a short video about it. You can find it on my You Tube channel (link below). I talk about why it's so important to cook, even though you might not feel up to it. And I share some tips.

I'm curious how you do it. You can let me know in the comments on You Tube or here. Looking forward to hear from you!

Take care,

Mama Sanna

locked in

It is dark and quiet

I hear the beating of my heart

A reassuring sound, in te middle of a hurricane

In my brain it shakes, flashes, crackles and hums

My whole body is shaking with it

Every muscle, painfully trembling

I'm cold

The blanket hurts the tips of my toes

Get it of me!

Noone hears me

My breathing is slow

Too slow to my liking

My heart joins in

Beating strong in a slow motion

My muscles relax

The pain rises

My body's asleep and stopped moving

Hey! I'm still awake!

Noone hears me

the sleep gets even deeper

But I'm not with it

I want to get out

I feel my hand

But I can not move it

I want to shout

But my mouth keeps quiet and shut

I want  to sigh

But my breath is asleep

And I surrender...

I wait....

Untill my body will have a little bit

of energy to hand me back the steering wheel

How long will that last this time?

One hour? Two? A day?

Or will I never get out?

Don't go there...

Don't give way to fear

I want to scream

My mouth doesn't remember how

Drifting on waves of fear and surrender

I wait for the moment of liberation

One hour....one and a half...

When my hands and feet get warm

I know it's almost there

My body is waking up

And I...I feel beaten

A deep sigh, moving hands

My eyes and  ears made clear

Are you awake? My daughter asks

Sunny, cheery golden child

She has no clue of my trip to the Underworld

And I leave it that way...

Tears run down my cheeks

As I kiss her soft golden hair

Grateful that I still can

Sanna

the naME of the gaME

Having a chronic illness is something you’ll never get used to. You would think, because you’re dealing with it every day, you’ll know how it works. Uh-uh! You’re wrong! It’s like playing a board game, of which you don’t know the rules. And whilst playing, you’ll learn them. Or so you think. Because just at the moment you think you get it, the rules change. Just like that! You can’t blame anyone. You can’t leave the game. You’re right in the middle of it and you have to deal with it.

Yesterday was a good day. Note: a good day is a day where I don’t have to lie down for 2 hours after 1 hour of being in an upright position. On a good day I can lie down for 1 hour. So it’s one hour up, one hour down. Oh, I was so happy! And it was also the day, I would take my eldest daughter to the theatre. It was her birthday present and we had been looking forward to it.

Armed with earplugs (to minimize the stimuli) we went to the theatre at the end of our street. It was so wonderful to be in that atmosphere again! Being a former stage-performer, it was so good to see and feel it all again: the vibe, the music, the joy of the actors and the audience, the storyline….OMG! Once in a while a tear would creep up . Because with every applause I gave, every cheer I yelled, every laugh I laughed, I felt my body protesting. And that reminded me that I couldn’t join. Not on stage, and not even as a spectator. “Mum, then don’t applaude”, my daughter said caringly. So OK, I applauded softly. I also tried to laugh less….but that was just impossible.

It was a great show. Afterwards they opened the floor for a disco night, but we left. With a heavy heart, but hey: I knew the rules of the game, and If I went to bed straight away I would have a good day again tomorrow.

Today…total hangover. Totally overstimulated brain. Wobbly legs, muscles aching. Left eye hardly sees anything. Deadly exhausted. Light and sound just unbearable. What have I done? Didn’t I play it by the  rules? Apparantly not.

And so…another useless day. Laying in bed. Shutting out light and sounds..Waiting for it to get better. After three hours that’s the case, thank goodness. And I post this message. Before I have to rest from that exertion as well.

ME means you have to constantly adjust to the new rules of the game. And to accept that there’s no negotiating. It is the way it is….Or it isn’t. But that “is” too…Because I am where ME is…

Recipe: Italian Stir-fry with Zuchini and Spinach

*Pantry-cooking

*Quick, affordable, healthy and nice

Glutenfree, Sugarfree, Vegan, Guthealth

Ingredients for 4 persons:

1 clove of garlic

1 red or yellow bell pepper (paprika)

½ zucchini or 1 small one

1 small onion

1 carrot

Approx.. 5 sundried tomatoes

4 large handfull of spinach

1 handfull of cashew nuts or pine nuts

Italian herbs

Side dish:

Quinoa, (spelt-)couscous, rice, or (lentil-)pasta

Coconut oil for baking

Celtic Seasalt to the taste

If desired: grated cheese. For example: pecorino, gran Padano, or matured Gouda.

Let’s get cooking!

Prepare your favourite grains according to their instructions.

Shred garlic and onion. Cut all the other vegetables (except for the spinach) in small cubes or strips.

Heat a little coconut oil in your stir-fry pan and fry garlic and onion until they glaze. Add all the other veggies except for the spinach and the sundried tomatoes. Stir fry for approx.. 5 minutes. After 3 minutes, put in the nuts and fry with.

Add spinach and stir-fry untill it’s shrunken. Then add the tomatoes and the herbs and stir. Let it simmer for only a minute or two. Now you’re ready to go!

Serve with grains to your liking and add grated cheese on the plate. For vegans: add a little bit of coarse Celtic Seasalt.

Enjoy!

Mama Sanna

This recipe is made by Sanna Jonkhart for Whole and Healthy Mum

Ofcourse you can share, but please mention the source

More recipes? Check our blog on www.wholeandhealthymum.com