Creating A Retreat Away From My Own Bedroom

Everyday there seems to be something new in the garden. It’s constantly changing. I try to take a walk through the house daily, so I can look out the windows and see the different parts of our garden, it doesn’t always happen, but it’s a goal. ​And I’ve been careful to stay out of direct sunlight, shading my eyes better this week, after my sun-induced crash ​recently.

Looking Back On The Past Week

I’ve spent much of this week in the dark after some ​unforseen circumstances at the end of last ​week caused a flare. Ma brought ​some beautiful flowers in ​​while I was not doing so well. Having ​fresh flowers ​from our own garden ​in my room is such a treat, especially when ​I can’t get out of the house regularly. I did however finally get out into the garden later in the week. So much colour, such a joy!

Creating A Retreat From My Bedroom

​​Do you have a special spot you can escape to when things are rough? A sort of retreat for the very overloaded ME system. After days spent in the dark in bed, I have finally moved back to my bedroom again.

I ​spent a few days in the parents room this week as it’s cooler, darker and further away from the street. They don’t live here with us, so their room is empty most of the time and ​provides the perfect ​location for me to escape to when I need to get out of my own bedroom.

We’ve had ​gardeners and builders in the neighbourhood this week, so there has been ​a lot of noise close to my bedroom. Having another room to escape to has been a blessing.

Their room is darker than mine and ​has very dark curtains​. It even has a tinted window. It was like that when we moved in, ​and it’s been really ​helpful. ​Mum’s bed is adjustable too, she has had an adjustable bed for many years due to her back pain and circulatory issues.

My sister carries all my things over and I park my walker in the hallway, outside the door. Their room is smaller than mine, so I can’t manouvre the walker in there. Sis makes sure I have my cooling pads, phone, emergency call button, water, supplements, sleep mask and charging cables. I get in bed and she closes the door behind her. The house turns ​even more silent than usual and we just wait it out.

I don’t use the ceilling light when I’m in there, but a dim lamp which, when the bed is reclined, is behind my head, so I don’t have direct light in my eyes. Though most of the time, when I’m over there it’s because I’m struggling and need more darkness than I can get in my own room.

I have blackout curtains, but my room gets full sun in the afternoons, so it streams in around the curtains and reflects off the ceiling and walls – perfectly fine most of the time as I wear tinted glasses, but when I’m really poorly, I just can’t cope with even the tiniest bit of light, so it’s been a real home away from home when I need to get away from the front of the house.

Still, I’m always happy to return to my own bedroom, especially if it means I can tolerate some light again.

Keeping ​Occupied Despite Feeling Really Ill

Once again, ​I’ve entered my second week without a shower. But I’m quite happy anyway. I’ve been resting well. I’ve also been drawing a little bit ​and I even crocheted a few granny squares this week while watching catch up TV on my phone in bed. ​

The drawings are just simple silhouettes on a watercolour wash. Tiny little 6cm x 6cm cards which I had initially cut for my 100 Day Project earlier this year. I soon realised why I never complete the 100 Day Project – it overlaps with ME Awareness Month which always wipes me out within a week or two!

So now I have loads of these tiny squares to doodle on when I’m feeling too ill or shaky to tackle a full size piece of art, but want to be creative.

Three 6x6cm mini cards, painted with sunset colours, each with a sunset scene drawn on with black ink.

Mini Sunset Drawings

Crocheted granny squares in blue and brown, lying on a blanket. Brown crochet hook to the bottom of the picture.

Crocheted Granny Squares

As for the granny squares, I’m not sure what I will make with them. Probably a lap blanket. I have one my gran made me a few years ago, this one could be a good replacement for when the other one needs a wash. I use them on my legs when on the sofa or in my wheelchair. I say legs, but the one my gran made is big enough to cover my whole body. Love it!

Crocheting something like this is very repetitive, so it’s good for days when the brain fog is thick and thinking is hard.

Update On The Root Cause Protocol

The new protocol is going okay. I’ve felt a few changes after 2 weeks on it. Mainly increased pain levels and I’m more sleepy. ​As always when starting new treatments or routines with ME or CFS, things tend to get worse before they get better.

So I decided to extend phase 2 for another week or so since last week’s flare triggers are probably just making everything harder anyway. I’d like to stabalise on phase 2 before I start adding new things. Especially since phase 3 requires taking things I’ve never had before.

Enjoying Family Time

Our parents don’t come by every week, we try to space their visits out as much as possible as constantly having people over every week is really hard on me. But I was very happy to have them here again this week. Sometimes you just want family around and mine ​are really ​trying to be extra quiet when they’re here.

A pastel pink creeping rose with a wooden fence behind
Tall yellow Lupin with the wooden fence behind
A pink stripy carnation in front of a copper bird bath, a wooden fence behind.

I was feeling ​relatively well​ the one day ​they were here, so I spent the afternoon on the sofa with ​them, enjoying the garden views​ and just relaxing, but of course there was conversation too. That alone is an exertion I don’t usually have much of, my sister and I live in relative silence most of the time.

​I ​did help make one of my Keto snacks in the evening too. Little chocolates with bee pollen in for crunch. Bee pollen is part of The Root Cause Protocol​. It’s a wholefoods source of Vitamin B, among other things.

I just spent a few minutes at the kitchen table while making them, legs raised up on another chair, but I’ve been exhausted since. Quite achy too. My body really doesn’t like sitting upright, especially since I’m probably still recovering from the previously mentioned flare.

​A Surpise In My Inbox

​I’m so excited – it’s July and that means it’s time for the WEGO Health Awards and I got a lovely email from them again. This year I ​have been nominated for my advocacy work on Facebook!

​I’m so grateful to whoever nominated me again this year. Last year I was nominated (for the first time) for my blog, this year for the “Best In Show – Facebook” award.

You can read all about it and find out how to support my nomination, here.

I Finally Got Out Into The Garden

I ​finally managed to get out into the garden for a few minutes! It was marvellous. Lots of pain and bed rest since, but so happy i could get out there.

Char in the garden among the flowers. Wearing a sunhat and sunglasses.
Candy-striped Petunias in the garden border.
Very bright yellow flowers.

The fluffy, pink Long-tailed Tits were out in the trees too, they waited for me to go back inside before they decended upon the feeders. Our garden is quite small so I guess they don’t feel secure if I’m wobbling about out there, making noise with my walking stick. Too close for comfort.

The aim was to get some sunshine on my skin. The new protocol doesn’t use Vitamin D supplements and ​recommends getting sunshine. I might end up lying in patches of sunshine ​around the house with my sleep mask on​.

​Updating The Blog

With the slight improvement I felt yesterday I was finally able to potter around on the blog again too. Just general behind the scenes admin that needs doing. Mainly focusing on updating old ​graphics, fixing broken links, etc. I don’t really have much cognitive function for writing brand new content at the moment.

​Thank you so much for all the lovely messages I’ve had this week. Your encouragement, check-ins, photos, videos and prayers are such a blessing! Such a fantastic community here. Sending out big hugs to all who need them today.

A beautiful red Lily. Title reads: Creating a retreat away from my own room. What I do when I need to get away while housebound.

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​Note: ​this post was created from ​a ​combination of posts I published on Instagram and Facebook this week. Follow me there to get more frequent updates as they happen.

Thank you for stopping by. Hugs, Char xx

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Chronically Hopeful
Chronically Hopeful

Char was born and raised in South Africa, but has been settled in Europe for over 20 years. She's passionate about finding ways to live well, despite chronic illness.

Apart from blogging, she enjoys art, cooking, reading, gardening, gaming and learning new things. She speaks English, Italian and Afrikaans fluently and is slowly learning French too.

She used to be a teacher, but has been housebound with Myalgic Encephalomyelitis since 2015. Since then, she's focused on spending the little energy and strength she has each day on the people and activities she loves. Finding joy in the little things and celebrating the ordinary.

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