My family of MEEPS and thoughts on COVID-19 long-haulers & chronic illness

[Nellie]

A brave & thoughtful story my daughter Nadine wrote about her recent diagnosis with ME, my family's history with the disease, COVID long-haulers and how it's time to start paying attention to those who suffer from chronic illnesses we don't yet understand.

This opinion piece ran in a Canadian national newspaper -

https://www.theglobeandmail.com/opi...ss-i-know-what-the-covid-19-long-haulers-are/

 

[Judee]

It's a very good article. Your daughter is a talented writer and I'm glad she is advocating for ME and Covid-19 long haulers. It's good that she contrasts the active lifestyle with the drastic change this forces upon us. Thanks for sharing it here.

 

[PatJ]

That's a well written and empathetic article.

I spoke by email with Nadine in January when she was still here in Yukon. Her former coworker (Dan) is a friend of mine. When I last spoke to him, he mentioned that Nadine's symptoms had quickly worsened since I had emailed with her, so I was glad to read this in the article: "I can work from home, write, socialize and have gained enough energy back to live independently." I hope she continues to make gains in her health.

 

[Blue Jay]

Thank you for posting this, @Nellie. I agree that it is an excellent article. I admire all your family for the way you cope.

 

[Nellie]

That's a well written and empathetic article.

I spoke by email with Nadine in January when she was still here in Yukon. Her former coworker (Dan) is a friend of mine. When I last spoke to him, he mentioned that Nadine's symptoms had quickly worsened since I had emailed with her, so I was glad to read this in the article: "I can work from home, write, socialize and have gained enough energy back to live independently." I hope she continues to make gains in her health.

Thanks PatJ. I'll pass your message on to Nadine. She's definitely missing the Yukon.

 

[lenora]

Hello @Nellie......Your family has gone through so much, all of you, and you have my profound sympathy.

What worries me at this stage is that healthy society will once again look at us as something to be feared. Hey, 30++ yrs. ago, I felt the same way about myself. I was terrified of giving it to my husband, daughters and anyone who was in our home even. I've later gone through grandchildren reaching the ago of 20 and no ill effects, to those still growing up (youngest age 8).

Have you ever had those same thoughts? If so, what is your take on them? I really do fear that we are in danger of becoming the early AIDS victims. I saw it firsthand, read about it and a lot of them suffered not only rejection b/c of their homosexuality, but b/c they were ill and no cause was known. Is this to be our lot in life, and what about our loved ones? Are we to be feared....and is research showing any reason why we can't make it to finish line? Yours, Lenora.

 

[lenora]

I'm sorry that your daughter had to leave the Yukon, and that your entire family has this illness. It's not my business, but I would really rule out a congenital cause fyi. L. sided scoliosis is often one sign of neurological problems, but the best of all would be an MRI. Have them look for CCI, Arnold-Chiari Malformation and Syringomyelia. These are the ones presently known...more will come later, I'm sure. I do wish each of you well. It's a long journey. Yours, Lenora.

 

[Wayne]

A brave & thoughtful story my daughter Nadine wrote about her recent diagnosis with ME

Hi @Nellie -- Thanks to your daughter for her well written and insightful article. And thank you for posting a link to it here on the PR forum.