My wheelchair and I: shopping with the family

wheelchair in nursery

I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.

This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!

It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:

Tiny white bugs, gone at last!

At last the saga of the dust mites is over! The bugs seem to be gone after 2 weeks of intense cleaning and hoovering and constantly examining every nook and cranny of the house to make sure they hadn’t spread elsewhere and zapping every single mite we found!

If you don’t know the story about my bug infestation, you can read about it in an earlier post, here.

To say I am now paranoid about creepy crawlies is an understatement. They have really messed with my head. I can’t stop staring at every speck of dust to make sure it doesn’t move!

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!

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. 

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! 

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