Teeny tiny white bugs

This past week we discovered that my bed, which was in the house when we moved in, had some bugs!

Not bedbugs thankfully, more like tiny dust mites or something similar. Teeny tiny white specks of dust that crawl around independently.

So annoying because now I cannot stop staring at every speck of dust I notice on any surface: does it move? Quite nerve wrecking!

The landlord was brilliant and came out the same day I called him to take the bed away and we’ve had multiple sessions of hoovering and wiping down surfaces and constantly going in my room to check (real close to every surface) if we can see any more specks moving.

Since the bed was removed we have found only about 5, before it was about 5 every couple of hours and only on one item I leaned against the bed.

So glad we seem to be coming to the end of this – apart from the huge amount of bedding and clothing that is quarantined in bags, waiting for the large machines and driers at the laundry. We’ve taped the bags shut so they can’t escape. 

Landlord just brought me a “new” bed. It’s used too, but way better condition than the other one and it doesn’t smell bad at all.

Both room and the bed will be hoovered and inspected a few more times before we put the new bed in my room. I’ll sleep in the living room for a few more nights I think. 

We are using the hoover and wiping down surfaces with alcohol. Since they were mainly in the bed, I’m not sure how we would have got rid of them without getting rid of the whole bed!

You can Google dust mites and mould mites for more information.

Have you ever had these tiny white bugs in your home? 

It seems like they gather in places where dead skin can accumulate, as well as warm or damp areas. This includes beds and electrical equipment like laptops and game controllers.

How did you get rid of them?

BuJo July: New month, new schedule, new goals!

I discovered the bullet journal craze in 2016 while I was looking for a way to track my symptoms, medications, activity levels and appointments. 

Brain fog makes keeping on top of things quite difficult and I’ve always enjoyed the idea of keeping a journal, in fact I collect notebooks and paper because I always imagine all the use I could get out if them. 

Bullet journals in particular are very versatile and personalisable which is perfect since we all have different needs. 

I used my first one for many months, I almost filled the whole book, but at one point my therapist told me to stop keeping track of everything because she thinks this keeps me focused on the wrong things. 

I took up her challenge and stopped taking notes, but I didn’t get any better, the problem is not in my head or my thinking, I am quite at peace with my condition and the season I’m in right now. 

The problem is physical, and keeping track of things is a way for me to monitor my progress and figure out where I might need to adjust my routine. 

So this month I’ve taken it up again. I thought it would be a good time because I’m starting an elimination diet to identify my allergens, I’m also starting in a range of new supplements which Dr Myhill recommends. 

Apart from those reasons, I am also quite settled in my new house now and have some things I want to do daily, but staying within my limits is important, so tracking activities and resulting symptoms is all part of the process. 

I’m going to share a few of the pages I’ve created so far. 

July cover page

BuJo July 17 cover wip

I decided to make this bullet journal a bit more colourful than the last one which was purely monochrome. I had only ever used a black pen in my previous BuJo! 

So I’m making cover pages for each month. I decided an under the sea theme for July since it’s supposed to be summer. You can se the finished cover at the top of this post. 

Monthly overview pages

Next up are the monthly overview pages. I had unfortunately already glued the cover page in before painting it, so the moisture from the watercolour severely buckled the page on the left, it looks much worse now than in the picture, but I’m ok with it, this journal is going to be more creative and messy, I’m letting go of perfectionism – it’s an obstacle to creative freedom! 

You can see the page on the right has some very wobbly lines. I set up this spread while in bed, so things didn’t come out perfectly,and that’s okay too. I like how it turned out with multiple lines drawn in without a ruler. 

I was more careful after that though… 

Health log and notes

On this spread I track my supplements, water and hot drinks, I also have space for notes and I’ve added a column for my daily step count and a little weather icon since so many people say that their symptoms are affected by the weather. I’d like to see if it’s the case for me too. I’ve never actually taken note of this. 

Reading log

Here I will make notes of Bible readings and other books I’m reading. I’ve never tracked my reading consistently, so I’m going to try it. There’s space for notes if I come across a great quote or want to look something up later. 

Creative log

On this spread, I’ll log my creations for each day. A way to keep track of my activity levels and make sure I keep practicing. Practice makes progress! There’s a space for ideas and inspirations. 

My activity tracker

This is the main page I’ll use to track activities for the month. The decorated flap on the side folds out and lists the activities down the left side of the page. 

I couldn’t fit the entire month across the top without creating the extra flap that folds out, so I decided to decorate the back of it. I’m really pleased with how it turned out. 

I have a few more pages I haven’t shared. 

One for tracking blog posts and social media shares. I tend to forget to share my posts to social media, then nobody ever sees them. 

I also have a weekly meal plan spread with space for grocery list and recipes I’d like to try. I’ve also included a prayer requests page where I keep a list of names and requests. 

Then lastly, for now, there is the daily log where I simply write the date as the heading and make my to do list for the next day. This doesn’t get filled in advance, I will make the next day’s log the night before and use as much or as little space as I need. 

I’m really enjoying this layout so far. It’s neat and tidy. Minimalist, except for the cover pages. 

I don’t think I’ll be writing a lot in this journal like I did in my first one. I’m making use of more efficient trackers and tables to jot quick notes or simply highlight or tick squares. Should be much easier to manage than all the writing in my old BuJo. 

The paper in this note book is not ideal for lots of decorating, so I think this layout is a good compromise. 

I’ll look into getting a dotted journal in the future, once this one is full, and possibly one with good quality paper that can be decorated without the bleed that happens in this book. 

So excited about this new journal and hopeful it will help me keep on top of things from now on!

Do you journal? Have you ever tried the bullet journal? What are your favourite journaling supplies? 

Decorating my journal

I’m starting a new journal tomorrow with the start of the new month. I want to track my health: supplements, diet, symptoms, etc as well as my to do lists and blogging ideas and my schedules or routines, etc. 

This is an old notebook from Poundland. I love these though, and have a few of them I have used over the years. They have lined pages, excellent for note taking, but not so great for art. 

I might end up sticking pages together if I decide to get creative in here and it runs through a page. I’m going to try not to be so focused on details and perfection in this book, and rather use it as a practice of patience and acceptance of flaws. 

I’d already used this book for notes when I used to attend bible study in London, but there weren’t many notes in this one, so I pulled out the used pages and have started fresh. 

I’ll probably share some internal pages occasionally, but with my shaky hands, my handwriting is really bad. It’s very different to drawing and lettering. Lettering is really just drawing large letters and doesn’t require such fine motor skills as regular writing. 
If you’ve ever received a letter or card from me, you’ll know what I’m talking about! 

The cover was rather plain, and if I am going to use the book, then I’ll need to love the book, so I decided to decorate it this morning. 

It took a few shifts and spanned a few hours, so I’m thoroughly exhausted now and resting, but I’m super pleased with how it turned out. 

What do you think? 

Still itching: time to find the unknown allergen

I’m still struggling with this allergic reaction that started in February. I initially thought it was the Keto rash and tried coming off the ketogenic diet to get rid of it, without success. 

I then thought histamine intolerance, so I went low histamine, which cut out a huge amount of staples for me, including my main fat sources. So I added dairy back in. 

This full body itch persists, I’m not sure what it is and it just won’t go away! 

So I’m redoing my food list. I’m going dairy free again, nut free, caffeine free, as well as low histamine and Keto! It’s going to be tough. 

I’m going to see if I can eliminate the itch by identifying the allergen. The doctors just prescribe antihistamines and I was told not to change my diet, but frankly I’m sick of them prescribing bandaid solutions rather than figuring out what the cause is. 

It has been months now and I’m still itching. It’s ridiculous! 

So now that I’m thoroughly fed up, I’ll take it into my own hands, again, and do my own elimination diet. My meals might end up being very monotonous, but it’s what needs to be done at this point. 

I really hope I’ll find the culprit soon, so I can get back to eating a wider variety of foods. If this change in diet does nothing to improve the situation within a few weeks, I will have to insist they refer me to an allergist, because I don’t have the energy to keep scratching… It’s exhausting and frustrating. 

I’ll be quite sad if I’m allergic to nuts or dairy, but I’ll be relieved if I can pinpoint the culprit, whatever it is! 

I really hope it’s not another symptom of ME/CFS – that would be quite bad, but I guess I will find a way to deal with it, if that is the case. 

Have you experienced anything like this before? Just itching – everywhere. 

Too much of a good thing

If you’ve been following my journey, you will know that I’m currently experiencing an improvement in my condition thanks to the ketogenic diet I started earlier this year.

I thought it would be a great opportunity, having just passed international ME Awareness Month, to continue raising awareness and funds for ME research by setting myself a challenge.

Considering that I was almost completely bedridden for quite some time until last month, this is quite a huge deal.

I decided 1000 steps was a good place to start as that was what my fitbit was indicating. I have recently moved to a new home and through the packing and unpacking, I was reunited with my fitbit.

I wore it for a few days and noticed I was nearing 1000 steps a day, somewhere between 700 and 1000. I was so surprised and super pleased with the progress I was clearly making.

I started my challenge on 1 June 2017 and have managed to hit my target almost every day!

The idea is to aim for 1000 steps a day to raise £1000 for ME Research.

By keeping track of my progress with the fitbit and its app on my phone, I have noticed some behaviour patterns are emerging.

This past week I have managed to stay above 1000 steps daily, until yesterday. The problem was, as you can see from the image above, I overdid it on a few occasions and the flare day, yesterday, was inevitable. 

Took me 30 years to learn this truth about the Gospel

I grew up believing every word of the Bible. I still do, but my understanding has changed dramatically. It was all head knowledge, but I didn’t know the character of God.

I didn’t understand His ways or His plans for us as his creation. I certainly didn’t understand how salvation didn’t require jumping through hoops and sacrifices if that’s what God required in the old testament. It didn’t make sense to me.

I spent my life filled with guilt and fear. Fear that I wouldn’t make it to heaven, that I’d end up in that pit of flames. I tried so hard to be good, and by human standards I was quite a good child, I think, but I knew it wasn’t good enough according to God’s standards and that was my problem. 

One of those days, again

Today is one of those days… 
I’ve overdone things this week. Went out to GP on Monday and although I was in wheelchair, it knocked me hard and I then also went into Sainsbury’s afterwards to get my meds, should have stayed in the hot car rather than going with into the busy supermarket, but the pharmacy had a delay in preparing my medication, so we thought the cooler shop would be better. 

Then the next day I somehow almost doubled my step count! Not sure how that happened, I was in the house all day. I really felt it in the evening though, so much pain… Not good. 

Last night my knees were on fire again and today I’m just drained. I didn’t even wake up until 10am! That is unusual. Silly me! I’m always too enthusiastic when I’m feeling good and then I overdo it. I’m sure a full day of complete rest will be good for my body though.

Be kind to yourself, your body works hard, listen to it, nurture and nourish it and don’t forget that rest is a vital part of life! 

No step goals today, just rest goals! 

Regardless of how weak I’m feeling, it’s a gorgeous day again, one can’t be anything but happy on a day like today! 

Hugs, Char

CFS Diary: the randomness of ME/CFS symptoms

This is the first post in a new series, it will be a sort of diary, where I share my day – a little peek into daily life with chronic illness.

The following post was originally written in 2015, just a month after diagnosis, but I thought I’d share it for some insight into what day to day life is like with ME/CFS. I was still getting new symptoms constantly and they were all so new and bizarre to me.

Throwback to June 2015

This week I’d say my main issue has been pain. I’d wake up in pain, in the night, in the morning, I’ll have aches all day, toothache, headaches, migraines, stabbing pain, hip pains, light sensitivity pain… All sorts.

I’d still have a bunch of other symptoms, but I’d say it’s been a relatively good week.

I can function in the house with pain. I read, draw, cook, eat, maybe wash some dishes after, and I can rest whenever I need to. I sit down most of the time anyway, praise God my whole studio flat is probably the size of your average bedroom so there’s not much walking to be done!

My left arm is bleh most of the time, feels numb or dead and painful all at the same time, so sometimes I can’t even draw without the shakes coming on. The pain is mostly bearable, but sometimes it gets to the point where I need to drop everything and lie down. And admittedly sometimes I cry… Especially if it’s the stabbing pains in my hips, they’re just horrible! 

How the ketogenic diet reduced my ME/CFS symptoms

I often get asked what this ketogenic diet has done for me. What benefits have I had? Why should somebody give up those delicious carbs and starchy foods? Are the benefits really worth the sacrifice?

In this post I’ll explain my journey so far. In short, in my opinion, the answer is yes – it’s definitely worth it! Let me tell you why…

Tough Decisions: To Keto or not to Keto?

Tough Decisions

In February I started a ketogenic diet in order to help manage the symptoms of ME/CFS. This decision was based on Dr. Sarah Myhill’s recommendations in her latest book “Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis”.

Switching to keto is a huge commitment, you cannot do it half way. It is a very strict way of life and won’t work if you’re not committed to putting in the effort. You are essentially teaching your body to use fat for fuel instead of carbs and sugar. It’s quite restrictive and cheating isn’t an option as it can get you out of the ketogenic state.

Below I’ll outline my keto journey this far and then get to the problem at hand: whether or not I personally should continue on this journey and why I am struggling with it after 2 months.

Your advice and recommendations would be so appreciated!