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…
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!
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!
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
Had a lovely quiet holiday weekend, but did enjoy my first outing in a couple of months on Christmas day. Was super blessed to have such understanding and considerate friends and that the Lord gave me just enough strength and relief to be able to really enjoy the day! Praise God!
Our friends came to pick us up and brought us back later in the evening. We got to spend a quiet and fun evening with the 2 of them in their new flat. There was a wonderful roast dinner of a Cornish Game Hen each, stuffed with an incredibly good wild rice stuffing. Green bean casserole and freshly baked bread were also on the menu, as was homemade mulled wine.
Although I’ve been in bed for the last couple of days since, today I felt quite good generally. Just my hips and coccyx tried to kill me each time I stood up. So much pain! I washed a few dishes this evening and tried to make a rice salad for dinner, had to stop and get back to bed in the middle as I got so weak and dizzy and felt I would collapse… Of course my sister finished off the dinner for us. So glad to have her here!
Then by 9-ish pm I was utterly exhausted again and had to lie down. I think I managed to fall asleep by around ten and slept for only an hour. Woke with the left side of my body numb and tingling… Like Pins and needles on steroids. Left arm and leg. Dead. So my sis suggested I sit up in bed to help the blood flow back to my limbs, it did help, and here I am at 2 am still awake…
Last night I also lost feeling in my left leg. I also had to sleep by ten and slept until ten this morning! Struggling to wake up in the mornings, not like me to sleep so late in the day. My mind has been all over the place too. Hard to form sentences at times, I’m forgetting words, or what I’m saying mid-sentence, it’s frustrating. Safe to say I’m in some sort of flare within a flare.
Spending my time in bed colouring, surfing Internet, Netflix and daydreaming… Also known as recovery mode or what I like to call vegging. Minimum exertion activities. And by minimum exertion I mean activities that require little to no brain or body exertion! Typing is exhausting. And I’m getting sleepy again too… By the way, I haven’t showered in days, so I haven’t taken any new photos in a while. I’m hoping tomorrow can be a shower day!
Sweet dreams all. xx