Category Archives for "Spoonie Life"

posts about life with a chronic illness

How carbs make my ME/CFS worse

I have spent so much time on the sofa and in my bed again this week. One would think I’d no longer be surprised by this, but I continue to shake my head every time it happens.

It’s the carbohydrate effect.

This current flare is most likely due to the fact that I’m out of ketosis again since trying to deal with my allergies/histamine disorder. I assume I’m no longer fat adapted because, amongst other things, my munchies have returned with a vengeance!

You see, I’ve increased certain carbs (mainly apples and sweet potatoes) which help reduce histamine building up in the body, but by trying to solve one problem (itching, hives) I’m causing another (ME/CFS flare).

It’s a vicious circle, but one has to decide what the priority is and work with that. For me it was the itching. I just couldn’t take it anymore!Continue reading

Ten Commandments for Reducing Stress

When living with a chronic illness it is easy to let all sorts of negative feelings creep in. Guilt, loneliness, fear, frustration, these are all common emotions among spoonies, and they’re not the only ones or the worst.

The problem with letting such emotions linger is that they tend to cause havoc in our bodies, often making us more ill. It is important for people with any sort of chronic illness to find ways to reduce stress and negativity if they wish to feel any sort of improvement. Continue reading

Enjoying Nature when you’re Housebound with Chronic Illness

herb garden

Living with a chronic illness like ME/CFS often means that you are housebound and unable to enjoy the outdoor activities you once loved. You might be like me, love nature and going exploring, but your condition has left you stranded in your home.

Although there is no magic cure to get you out and about, there are a few things I have done to help me enjoy nature while I remain indoors. There is a calm and peace that comes from being around trees and plants. Lets see how you might bring some of that nature indoors.Continue reading

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!

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!Continue reading

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

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!Continue reading

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. Continue reading

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. Continue reading

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