How are people coping with the COVID restrictions and ME/CFS?

  • For me for a while I had to re-familiarize myself with the pacing concept. My routine and world was turned upside down. I was stressed! The bus service to the city halted so I couldn't get to my medical appointments but luckily my doctors clinic wasn't affected. The time table for the bus changed and the days and the bus station café went bust and was closed down. Without panicking I was able to re-arrange my appointments to suit the new bus schedule and booked early to get one of only 20 seats on offer out of 50. Now we are back to fully capacity luckily. It is now the 'norm' to bring your own water and keep plenty of hand sanitizer at hand. Then our town had no toilet paper. no hand sanitizer and no hand wash and no masks and a lot of can food was out of stock and or in short supply. This made life difficult especially for rural folk. So when we found the items we needed, we kept it in stock but didn't stock pile! It also has been difficult keeping up with all the government announcements. Half the time I didn't know when to wear a mask and when not to so I just keep a new one on me at all times. It is even harder when you have 'Brian fog' and your energy levels are low and you need re-charging at times. However, I can honestly say that I am coping and managing the COVID restrictions better now than at the start now that I know what to expect. What a year last year was and even this year. I am just wondering how others with me/cfs are coping with all the COVID restrictions and what have they experienced!?

  • That sounds very challenging @donnamarie but I'm glad you are coping better now. I can relate to struggling to keep up with the regulations due to brain fog. I get my partner to read the news for me when I can't handle it myself, but like you I just carry a mask everywhere anyway - my doctors have advised it due to being "vulnerable".

    At the start of the pandemic I was very scared and still go through waves of nervousness when there's a fresh outbreak or whatever... Or any time a family member has to go out in public. Going to appointments in person is now scarier than it used to be, as many of my specialists work out of hospitals. That said, using my powerchair means that usually I can go an entire appointment without directly touching anything in my environment, which makes me feel safer (I have a long stick to push buttons in lifts etc).

    I'm probably in the minority here and I appreciate my privilege in being able to feel this way; but in a lot of ways I feel the pandemic has improved my life. Some of this is just coincidence/stars aligning. I already wasn't leaving the house or socialising, so very little changed there. And at the same time that my health began seriously deteriorating, my partner was forced to work from home which was a good thing for me because I suddenly needed 24/7 supervision and care. And telehealth made accessible to me a level of healthcare that would never have been possible otherwise, just in the nick of time. Last but not least, increased awareness around hygiene and infection prevention (though arguably not enough - I rarely see people wearing masks correctly!!) has given me some peace of mind not so much around covid, but in relation to other milder respiratory infections that I might catch. I was wearing masks before the pandemic because mild infections make me so sick, and people judged me for it, so it's nice to finally be able to protect myself without getting rude comments and stares.

    Anyway, all that is to say that if you feel some aspects of the pandemic have made life easier for you, don't feel guilty. What this experience has taught us is that what benefits disabled and chronically ill people benefits everyone... Especially in a pandemic, but also during "normal" times. Things like telehealth, remote work and good hygiene should be socially acceptable and readily available options always.

  • You made some good points river and have presented a different point of view. Well, done!

  • @river Thanks for sharing your experience River. I must say I feel similarly and really glad to read it’s not just me. I get really sick too with mild infections so I have loved mask wearing in public being more acceptable. I still wear a mask when I go to appointments etc even though mask wearing not being done much anymore unless there’s an outbreak. Took me awhile to realise people were giving me sideways glances because they were actually scared I did have covid! I tell people in advance when they’re giving me cautious looks that I’m not acutely sick with anything, just immunocompromised. They look relieved! My GP made me laugh saying wearing a mask is a good way of making sure no one sits near to me 😂

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