My wheelchair and I: shopping with the family

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:

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. 

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?

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!

Reflections After Two Years in Bed

As the new month starts, I am filled with joy and anticipation. I love new beginnings, and for me, every new month is a new beginning. So is each new week, really. I enjoy celebrating the ordinary! In this post I want to share some very personal reflections as I look back at the road I’ve travelled and celebrate this new beginning.

Yesterday marked 2 years since I have been able to do any form of exercise that wasn’t just a short walk. My last workout was actually a bike ride. It was Easter break and I was visiting my family in Italy.

Basic Paleo-ketogenic Meal Plan for Beginners

Since starting Dr Myhill’s recommended diet, I have had quite a few requests for a basic meal plan. Many people find it hard to navigate through all the information that is out there, specially us spoonies with brain fog! I have had a while to work through the relative chapters in the book and have been on this journey for 6 weeks now. I am starting to feel the benefits!

This is the very first meal plan outline I gave my mum after I got Dr Myhill’s book. It helped her to wrap her head around this new way of eating and build my meals in a way that was not too daunting for her. I hope you will find it helpful too!

My First 40 Days of Paleo-Ketogenic Food

I’m happy to report that there have been some welcome improvements after a month on this LCHF (Low Carb, High Fat) diet! As discussed in a previous post, I started this journey into a Paleo-ketogenic lifestyle in February 2017 in an attempt to help improve my current condition. I have quite severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) which has left me bedridden about 98% of the time.

Things were looking quite bleak a few weeks ago, I was getting progressively worse, and then out of the blue on day 33, I felt like somebody had flipped a switch and I suddenly could participate in life again!