Five Things I Wish I’d Known Before My Chronic Illness

Posted by elained @elained, Feb 19, 2019

This article is in today’s New York Times: Five Things I Wish I’d Known Before My Chronic Illness.
https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html
I hope this link works. If not, just go to today’s NYT and Google the title of the article.

Regards, ElaineD

Interested in more discussions like this? Go to the Neuropathy group.

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

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@julesmaree

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

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Hello @julesmaree — It's easy to stop all email notifications. Here's a link with the step by step instructions from the Get Started on Connect guide. Also, you can access this guide from any Connect page by scrolling to the bottom and clicking the Get Started on Connect link in the left column.
https://connect.mayoclinic.org/get-started-on-connect/#stop-restart-notifications

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@julesmaree

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

Jump to this post

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@johnbishop

Hello @julesmaree — It's easy to stop all email notifications. Here's a link with the step by step instructions from the Get Started on Connect guide. Also, you can access this guide from any Connect page by scrolling to the bottom and clicking the Get Started on Connect link in the left column.
https://connect.mayoclinic.org/get-started-on-connect/#stop-restart-notifications

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Thanks John, I’ll give it a go.

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Hi @eddieray, welcome to Connect. Thank you for posting. Are you able to share a little about your chronic illness or what is your biggest obstacle? I have idiopathic small fiber peripheral neuropathy with no pain, just numbness but that has changed a lot of what I can and can't do anymore. One of my biggest hurdles is not wanting to come to terms with my limitations.

John

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@johnbishop

Hi @eddieray, welcome to Connect. Thank you for posting. Are you able to share a little about your chronic illness or what is your biggest obstacle? I have idiopathic small fiber peripheral neuropathy with no pain, just numbness but that has changed a lot of what I can and can't do anymore. One of my biggest hurdles is not wanting to come to terms with my limitations.

John

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I do not have numbness. Just pain. Tingling and occasional burning. Plus I just done generally feel well. Heavy head feeling.

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@judypall

I do not have numbness. Just pain. Tingling and occasional burning. Plus I just done generally feel well. Heavy head feeling.

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@judypall, are you taking any medications for the neuropathy? Also have you discussed the symptoms of your heavy head feeling with your doctor?

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@johnbishop I like your statement, “ one of my biggest hurdles is not wanting to come to terms with my limitations.” Thank you for voicing one of my frustrations! Becky

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Hello all – I had a grade 1 benign meningioma successfully removed over a yr ago but my quality of life is awful. So I, too, have not accepted my limitations!!! And this anger is not helpful nor healthy. I'm still grieving over the loss of the "old" Gloria whom i was very happy with.
But I enjoy looking at the sky & the sun & enjoying fresh air & listening to the trees in the wind.
You have lots of new "friends" feeling/thinking the same way, so you are not alone!
Lots of hugs
Gloria

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@gloriajean

Hello all – I had a grade 1 benign meningioma successfully removed over a yr ago but my quality of life is awful. So I, too, have not accepted my limitations!!! And this anger is not helpful nor healthy. I'm still grieving over the loss of the "old" Gloria whom i was very happy with.
But I enjoy looking at the sky & the sun & enjoying fresh air & listening to the trees in the wind.
You have lots of new "friends" feeling/thinking the same way, so you are not alone!
Lots of hugs
Gloria

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"Coming to terms with limitations" is a biggie! And if pain is part of the picture, I think it's worse.

I call this 'the new me'. Coming to terms with the 'new me' is vital. I have to come to terms with my grief and anger before I can accept 'the new me'.

Acceptance of the 'new me' doesn't mean giving up on the search for help and relief, however.

And I have had to 'come to terms with the new me' more than once, as my neuropathies have progressed and also include more parts of my body

So now I have' the new NEW ME'. A sense of humor is vital.

I recommend the book "How to Be Sick" by Toni Bernhard. Ms. Bernhard was a successful attorney teaching at a law school in CA, when she became mysteriously and permanently disabled. Her book has given me consolation and TOOLS for dealing with all aspects of life with 'the new me'.

Regards, ElaineD@

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@elained

"Coming to terms with limitations" is a biggie! And if pain is part of the picture, I think it's worse.

I call this 'the new me'. Coming to terms with the 'new me' is vital. I have to come to terms with my grief and anger before I can accept 'the new me'.

Acceptance of the 'new me' doesn't mean giving up on the search for help and relief, however.

And I have had to 'come to terms with the new me' more than once, as my neuropathies have progressed and also include more parts of my body

So now I have' the new NEW ME'. A sense of humor is vital.

I recommend the book "How to Be Sick" by Toni Bernhard. Ms. Bernhard was a successful attorney teaching at a law school in CA, when she became mysteriously and permanently disabled. Her book has given me consolation and TOOLS for dealing with all aspects of life with 'the new me'.

Regards, ElaineD@

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@elained – I can relate to that…I call it my new normal.

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