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:Continue reading

Tiny white bugs, gone at last!

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At last the saga of the tiny white bugs is over! The mites 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!

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Update: how I’ve been since moving to new house

Update Improvements after moving BLOG

We are settled in the new house now. I’m doing much better than I was a few months ago in London!

Still housebound, but I’m able to be up and walk around the house in the day, no more staying in bed all day (except during flares if I overdo things, like the last two days, see pic) but I hadn’t really had a big flare since moving to the new house in May!Continue reading

Teeny tiny white bugs

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

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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. Continue reading

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