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
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!
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
December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.
The message I want to get across this year, is that not every disability is visible.
It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn’t do anything about it. It wasn’t very frequent initially.
By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn’t help me. They did loads of blood tests and couldn’t find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn’t.
A couple of days ago we had some gorgeous sun after a few dark and dreary days… Here I’d just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! Only managed ten minutes in that chair, but it was lovely and warm.
My flat is so tiny, here I’m sitting right in the middle, halfway to the bathroom (top right), kitchen (behind me) and my bed (on the left side where photo is being taken from)… You might be able to see my walking frame standing on the right side of me too…
I love the sunshine so much, the warmth really brings a sense of wellbeing and eases the aches a bit. Not looking forward to a long winter, but it will make those sunny moment that much more amazing!!
Hopefully you can’t tell how horribly hairy my legs are or how one has been partially epilated while the other remains fully furry! Just had to stop after three lines up my leg… Take it in shifts. Might do some more today actually.
I know it’s not necessary, like painting ones nails, but it does make you feel better… Well, it makes me feel better anyway. Still hate seeing how my legs have deconditioned so much, no shape, no tone or muscle, just skin and bones which are now easily felt – it’s grosses me out that I can feel my own skeleton!! lol… But I know that one day I’ll be able to do a bit more activity and rebuild my muscles again. Till then it’s a matter of making sure I don’t lose them completely and then lose the ability to move myself.
So Maintaining movement, however little it might be now, to keep the joints and muscles as mobile and strong as I can now. Without overdoing things and making my general wellbeing worse. It’s a fine balancing act trying not to boom and bust… I tend to do too much and crash.
So grateful for all the help I get at home (my sis) and through the NHS (my therapist). PraiseGod!