I don't want to be insensitive to people who are struggling, but am I the only one who isn't finding the pandemic-related restrictions that difficult, because they are less restrictive than my normal life anyway? I keep seeing people complaining that they are really struggling 1/
with the restrictions and they just want it to end, really upset because they have gone a full day without seeing someone. Of course it's terrible that people are struggling so, but I have kept wondering "why don't I feel that way?". I'm pretty sure it's because my life was 2/
Actually harder before the pandemic in many ways, because at least now there is remote learning and remote access to healthcare, and people are understanding if you are unwell or can't leave the house, and even offer to help. My life is still more restrictive than the 3/
government restrictions, so lifting government restrictions actually would make my life harder because people would start expecting me to go places in person again, and there would be less understanding and community support again. I'm not saying this to be "poor me" or to 4/
suggest some kind of competition about whose life is the hardest or who is coping best, etc. This is a devastating situation for may people and I am privileged to not have such a complicated life (no job to lose, no kids to arrange childcare for, not a keyworker, etc.). 5/
But it just struck me as interesting that as a disabled person, dealing with a global pandemic is actually a bit if a breeze for me compared to the restrictions and challenges I usually face. I think this says something about how much disabled people deal with on a daily basis 6/
in normal times. Disabled people live with multiple restrictions, challenges, logistical complications, etc. even when there is no pandemic. And while the pandemic has made certain things harder for us, it has also made certain things easier like remote access & community support
I hope that once the pandemic is over, people will remember how challenging it was to live with so many restrictions and logistical complexities, and with the constant knowledge that a misstep could cost their health dearly, and remember that disabled people live like this always
I hope people will consider this afterwards and try to be more understanding of their disabled friends, family members, neighbours, employees, students, etc. Perhaps advocate more for the needs of disabled people & recognise that we aren't "snowflakes", we are bloody strong!

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More from @8Homeslice8

24 Aug

Just an FYI for anyone who has been diagnosed with ME/CFS who has had COVID-19 and is thinking of donating convalescent plasma:

People with ME/CFS are not allowed to donate blood (at least in the UK).

You might not be told this as not everyone knows.

Why can't people with ME/CFS donate blood?


Originally the ban was introduced because it was unclear whether ME/CFS was transmissible by blood (e.g. possible virus in blood).

Currently it's because the NHS says donating could make our condition worse.


In recent years early evidence has emerged from a few different research groups including at the NIH & Stanford, which looks like there is an as-yet unidentified "factor" (molecule) in ME/CFS plasma, which affects cell function.

Read 11 tweets
8 Aug
Reasons why, when doctors suggest my #mecfs is anxiety or depression, I firmly disagree. It's not because I deny that anxiety and depression are valid and debilitating conditions. It's not because I would be ashamed to admit if I had either.... 1/
... It's not because I am delusional. It's because my mood is good in general, I feel calm in general, and there is very little correlation between my mood, mental state and physical symptoms. Here is my mood diary vs physical symptoms scores. Green is good, red is bad:
Occasionally when my symptoms are really bad it dampens my mood. Occasionally I get anxious about accessibility issues, or upset about not having the career I would like, or having to fight to access dignified healthcare. But in general, my mood and mental state are good. 3/
Read 9 tweets
12 Jul
#LongCovid #covid1in20 the #mecfs community needs your help! For decades, ME patients have been left permanently disabled (wheelchairs, bedridden) by grades exercise therapy. Fir decades we gave reported these harms and asked for the treatment to be removed 1/
from the NICE guidelines. In 2017 NICE finally agreed to review the current guidelines which were 10 years old at the time. The new guidelines won't be published until 2021. We have been asking NICE since 2017 to add a warning to the front page of the ME/CFS treatment 2/
guidelines, to warn in the meantime that GET can cause harm to ME/CFS patients. We have sent multiple stories & evidence from thousands of patients who have been made much worse by GET, and asked multiple times for NICE to issue a warning to prevent further harms. 3/
Read 7 tweets
8 Jul
@MEwarrior_au @GrisjaG @amyismall @AnilvanderZee And yes that's a really good point for doctors to know too. Most ME patients are traumatised by feeling neglected, stigmatised, mistreated etc. by healthcare professionals. So actually GPs could really help be addressing that explicitly. They could ask about it, and state that 1/
@MEwarrior_au @GrisjaG @amyismall @AnilvanderZee they will do their best not to abandon/stigmatise/harm the patient, and that they would like the patient to keep in touch so that they can work together, and to tell them if they are feeling traumatised. That would make such a huge & meaningful difference to the patient. 2/2
@MEwarrior_au @GrisjaG @amyismall @AnilvanderZee I should qualify that by saying that I think a lot of doctors don't intend to neglect/traumatise/stigmatise their ME patients and prob don't realise they are doing so. Most UK docs are not taught about ME or are taught incorrect but harmful myths which they perpetuate unknowingly
Read 8 tweets
7 Jul
@amyismall Thank you for sharing your story and I'm sorry you have been having long COVID - it sounds awful. Yes exactly - with ME you can get so weak that you can't move your face muscles to speak, or so exhausted that sounds become too much to process so they are painful... 1/
@amyismall I think there's a lot that can be taught about ME at least, in terms of what we do know from biomedical research, and some good tips for management and ME-friendly care e.g. pacing, low sensory environments, concise communication with written bullet points of instructions, 2/
@amyismall No music in the waiting room, allow patient to wait in a quiet room if possible & where they can lie down if needed, offer phone calls & home visits if patient can't come in to the surgery, assess and treat orthostatic intolerance, treat pain and sensory issues where possible 3/
Read 14 tweets
1 Jun
I don't want to be a silent bystander, but everything I think of to say feels impotent and inept. No words can ever make up for centuries of horrific violence and abuses against black people, whether overt such as slavery and homicide or insidious such as systemic inequalities.
The magnitude & complexity of the topic is also too much for a Tweet. But racism, whether intentional or not, is a product of epistemology and epistemology shapes both individual actions & entire global systems. We need to address it at its epistemic roots, in my humble opinion.
Which is, of course, much easier said than done but theoretically not impossible. It's just not a simple or quick undertaking. And in the meantime the protests are absolutely necessary. They may not address the root causes but express the pain, anger, injustice & keep it visible.
Read 6 tweets

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