I have a question for you to ponder. How much quality of life are you willing to trade to get through the mundane tasks required in your life and home? Would you be willing to give up your entire weekend's socialising and activity because you vacuumed the living room floor on Thursday? Would you be … Continue reading Would you rather…
Tag: PEM
If time is money, my time is made of platinum
To someone who isn't privy to the details of my daily activities, it might look like I do nothing all day. It may even seem like I have more time available than someone who works full time. While I do seem to have a lot of free time, it's not as simple as that. Managing … Continue reading If time is money, my time is made of platinum
It’s not just being tired all the time: Post Exertional Malaise, the defining, hallmark symptom of ME/CFS
I recently joined redit and noticed that PEM is poorly understood as a concept, even within the chronic illness world. So here is some clarification. PEM is unique to ME/CFS. It's the defining characteristic that distinguishes it from other chronic illnesses. What it is not Malaise isn't tiredness, it's illness, lack of wellbeing, being sick … Continue reading It’s not just being tired all the time: Post Exertional Malaise, the defining, hallmark symptom of ME/CFS
Tips, tricks, and life hacks for living with ME/CFS
I did a talk for my local support group. Here's a video of it. CW: discussion of suicide risk towards the end of the video. There may be other sensitive topics too, but I don't remember what I covered at the moment. I did a talk on tips, tricks, and life hacks for people with … Continue reading Tips, tricks, and life hacks for living with ME/CFS
I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me
In March 2020 the scientist of the ME community predicted that Covid-19 would cause ME, a lifelong post-viral fatiguing illness, in a portion of those who recovered from infection. They estimated roughly 5-10%, based on SARS1, would struggle to return to pre-infection energy levels, and that many of these would never recover. It didn't take … Continue reading I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me
Heads it wins, tails I lose
Am I depressed or flaring? I'm tired and can't get the energy to do anything. I feel sick. I have a headache. My stomach hurts. My mood is low and I'm having panic attacks and anxiety. I can't get to sleep but when I do I can't wake up. I want to cry but can't. … Continue reading Heads it wins, tails I lose
CFS vs ME, or something else entirely, or why names matter.
There is a lot of debate around the place about the naming of this condition from which I suffer and what is should be called. There is general agreement that Chronic Fatigue Syndrome (CFS) is an inappropriate and misleading name. Other names have been suggested by various groups, but there is yet to be an … Continue reading CFS vs ME, or something else entirely, or why names matter.
Don’t fight the quicksand
When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could do is struggle, and … Continue reading Don’t fight the quicksand
I want my life back.
Feeling low. I know my vit D dose is due tomorrow, so some of it will definitely relate to that. So tired. So anxious... Sad... Scared... Tired... Frustrated... Sick. Everything hurts. I can feel almost normal after sufficient rest, but doing something as little as sitting up and eating puts me back into ME mode … Continue reading I want my life back.
Kicking it old school: Payback is a b***h
One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms … Continue reading Kicking it old school: Payback is a b***h
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