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!
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.
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
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…
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!Continue reading
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.Continue reading
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!Continue reading
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!Continue reading
Having Chronic Fatigue Syndrome, or any other chronic illness for that matter, can be extremely draining and leave you without much energy to do even the most basic things. How do you cope when you only have enough energy to do one or two things each day?
There are a number of things I started doing (or avoiding) once I realised that I was constantly reaching beyond my limits and actually causing my flare-ups, I will share them here. Continue reading
As some of you might know, I have recently started reading Dr. Sarah Myhill’s book, Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis. It’s a huge book, with over 400 pages, and includes so much detail about how the body works and what she believes is happening to sufferers of ME/CFS. I’m so excited about this!Continue reading
This might seem like a strange motto for the new year, but before you decide I’ve lost the plot, let me explain: I have Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS. It’s main characteristic is Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.
This means brushing my teeth, getting excited about a visitor coming or writing this post is exhausting and will have consequences in the form of a variety of symptoms.Continue reading