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: ME/CFS
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
Wrong place, wrong time, wrong reality
I often ponder the potential evolutionary reasons for ME, and potential advantages it could have. • Maybe it exists simply because it doesn't kill its victims before they can breed, and/or because society evolved to care for the sick and the weak. That's just depressing and boring, so that can't be it. • Or we're … Continue reading Wrong place, wrong time, wrong reality
Life, Death, and Library Books
It feels like I write about death a lot. I suppose it's because a Lorem Ipsum Life is a bit like dying. I lost everything and everyone I was when I got sick. Dealing with the grief of that 'death' is an important part of continuing to live. This morning I took a wee girl … Continue reading Life, Death, and Library Books
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.
Why would you willingly risk becoming like me?
I'm so baffled by vaccine reluctance, especially in populations old enough to remember polio. Covid causes long term damage and disability in a devastatingly high proportion of the infected. Severe-acute-respiratory-syndrome-Coronavirus-disease-2019, aka SARS-COV-2, AKA Covid-19 attacks the organs, blood vessels, and nerves. It's not just a respiratory infection, it's a systemic disease. We are seeing data … Continue reading Why would you willingly risk becoming like me?
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