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

Posted by elained @elained, Tue, Feb 19 6:12am

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

@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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Just thank you

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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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Thank you so much for sharing.. This is an article I can share with family and friends..

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Hi, my name is Laura, and I want to thank you for the web address. It helped me to understand why my doctors say I have a chronic illness and putting me on anti-depression medication. I'm even having a follow up with my neurologists in April. I hope they figure out what's causing my pain every time I eat, and I'm slowly having hearing problems as well with my eyes. So far every test I have say's there nothing wrong and I feel like no one wants to believe me.
yes, there are changes in my home but that's an everyday issue with changes.
1. Husband has to go through another surgery.
2. Newborn
3. Have to get new water pump…..ectra
Nothing truly new, but I guess this is enough for the doctors to say I'm fine.

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@david33

Hi, my name is Laura, and I want to thank you for the web address. It helped me to understand why my doctors say I have a chronic illness and putting me on anti-depression medication. I'm even having a follow up with my neurologists in April. I hope they figure out what's causing my pain every time I eat, and I'm slowly having hearing problems as well with my eyes. So far every test I have say's there nothing wrong and I feel like no one wants to believe me.
yes, there are changes in my home but that's an everyday issue with changes.
1. Husband has to go through another surgery.
2. Newborn
3. Have to get new water pump…..ectra
Nothing truly new, but I guess this is enough for the doctors to say I'm fine.

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@david33

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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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Good for you! Part of the grieving process is acceptance & I am really not there. I am still angry – about several issues which are all related to my brain surgery & the lack of info & support from my NS, hand-selected hospital & the health care team/system which is very fragmented!!!! BUT I am a very resilient person & my annger has, in fact, helped me. Sometimes this anger can give me good energ which I usually don't have a lot of. So I my learning to forward that anger energy to something goo & not make me.feel so guilty & messed up.

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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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@gloriajean… I dislike the new lady who has slid into my skin when I wasn't looking.

She brought fibro, I'm like whoa, just go! Then RA, I'm like, well you @#$&#!!!! Then….sjogrens. I'm like oh, bring it on! No way will you destroy MY life. Lol. Then came trgeminal neuralgia, a major head bashing stroke, then tremors, then migraines.

Now, we've made peace. She is the new me,at least what is seen, but she is quite superficial. The old me still lives in my thoughts, my sense of humor, my determination, my faith. I'm still here. I am held captive physically by the usurper, by the body snatcher. But if I treat her well, she cannot invade my spirit.

I want her book. I get tired psyching me out. Someday, I may just get too tired to play this game. Ready how others cope is very useful. Thank you for sharing this!

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A person can prepare for a possible event. But when a body fails in a dramatic fashion all you can do is deal with the fall out. Put the pieces back together and limp along. So many conditions have no cure. Just a few tips, maybe even too obvious to mention, but this post got me thinking.
1. Move any and all parts that still move
2. Develope an interest apart from medical issues. At first I was obsessive. Fine. But move on. If we're alive there's still life to live.
3 Give. If all you can do is read, then share books, or read to a kid. If you can laugh, share a joke. If you can bake, then share with someone who cant. There is so much to give. Even just conversation. Lot of lonely people out there, maybe within your own family.

Yep. Simple stuff. Kinda no brainer, I know. No matter what my struggles are, life isn't just about me. Gotta remind myself.

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