Tag Archives for " ME/CFS "

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

Share this post:

The freedom of Letting go

The freedom of letting go BLOG

Sometimes you don’t notice the weight you’re carrying until you let it go.

This is often such a hard truth to accept, but letting go of that control we try so hard to hold onto can actually be very liberating!

There are many areas in our lives where we crave order and control, but in reality it isn’t up to us and we can save ourselves a lot of pain and suffering if we can learn to let go of our need to control things or have things go the way we had planned.

This is true in our relationships, with our health, our finances and our jobs. We don’t have control over any of it and things will go wrong sometimes, no matter how much you prepare or plan ahead. That is just a fact – life happens. But God is always with us and He makes a way when there seems to be no way. I trust that promise completely.Continue reading

Share this post:

Bullet journal helpful for people with chronic illness

Sept Bujo

If you are anything like me, you collect lovely journals and have a stack of them just waiting to be used. You never know when the need will arise to use a notebook, but when that moment comes, you’ll be ready!

I’ve started and restarted many of them. Giving up on one purpose and then assigning another a few months later. I’m not good at being consistent with things, I seem to have trouble with religiously sitting down with a journal to write thoughts, feelings or prayers. And the same thing applies to my art journals.

The only journal I have had success in maintaining over extended periods of time is the bullet journal. I believe this is because of the way my bujo was designed: by me, as needed, and it’s super flexible.

Have you ever tried using a bullet journal?
Continue reading

Share this post:

Enjoying Nature when you’re Housebound with Chronic Illness

Enjoying Nature while housebound BLOG

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
Share this post:

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

Share this post:

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

Share this post:

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

Share this post:

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

Share this post:

The randomness of ME/CFS symptoms

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! Continue reading

Share this post:

How the ketogenic diet reduced my ME/CFS symptoms

keto for ME CFS BLOG

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…

Continue reading

Share this post:
>