New to the concept of chronic illness

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overdebated
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New to the concept of chronic illness

Post by overdebated » Mon Dec 11, 2017 6:03 am

Hi everyone, Mark here, new to MS and to the whole concept of chronic illness. Developed optic neuritis about four years ago, it went away, sat with the "possible demyelinating disorder" diagnosis for years, then three months ago noticed an intention tremor and couldn't feel my legs. In an area with public health care so the wait for an MRI was going to be six months. Ended up in hospital for a month due to unrelated problems (seizure causing kidney and liver failure that randomly happened due to a bad med reaction) and while in they did a few cerebrospinal MRIs and lumbars and found the usual signs, including a new cerebellar lesion. Had neurology and OT working with me in hospital, then got discharged and moved cross country so waiting for my first appointment with a new neurologist here, should be before Christmas. Have to say, the diagnosis was kind of reassuring - it feels easier for me to face something when it has a name.

I've read a lot about grieving your mobility, grieving your health, but I feel good overall and only really use my cane or crutch when tired or if I know I'm going to be standing a while. Guess my real core question is, how did it feel to be told you're unwell and will not get "fully" healthy again, and it could come back ten times as bad at any time? It kind of feels like I walked into a game of russian roulette. How did you all deal with that sensation? I don't psychologically feel chronically ill yet. Until one of my aunts comes up to me and tells me how pitiful my situation is and she's praying for me or something. Is it going to just slowly sink in as the disease progresses? Will there be times where it just hits me like a car?

Sorry for rambling. A bit overwhelmed yet. Thanks in advance for your replies.

ElliotB
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Re: New to the concept of chronic illness

Post by ElliotB » Mon Dec 11, 2017 6:25 am

Sorry to find you here but welcome! You are among friends. Ultimately your future health is totally in your hands, and learn to expect (and ignore) the many odd comments you are likely to receive. In general people mean well even though it doesn't always sound that way.

" how did it feel to be told you're unwell"

It didn't feel good, I grieved for a very short time and then decided to dedicate myself to feeling better.

FWIW in many ways, my day to day life has been enhanced because of my illness! And I have been reasonably successful in my goal!

overdebated
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Re: New to the concept of chronic illness

Post by overdebated » Mon Dec 11, 2017 6:56 am

ElliotB wrote:=the many odd comments you are likely to receive.
I went to church last Sunday and someone I'd not talked to in about 20 years grabs me and hugs me and starts crying and tells me how pitiful I look. And all I can think is "Are you mad? I've just put on real pants and a wool sweater for the first time in a month. I look great."

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jimmylegs
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Re: New to the concept of chronic illness

Post by jimmylegs » Mon Dec 11, 2017 7:06 am

lol! welcome to the forum. it can feel frantic and desperate for a while, then things settle in and it's ok. you get comfortable with a new normal. best thing for me has been the learning curve. realizing that my health is to a large extent my own responsibility, and taking on the challenge. all fascinating. my auto signature below contains the bones of my own approach. again, welcome!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

eventhis
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Re: New to the concept of chronic illness

Post by eventhis » Fri Dec 15, 2017 8:52 am

I’ve been going through different phases of acceptance for the last two years since my dx. I, too, feel healthy but sometimes very scared. Something that helps me is to remember that my situation is still not so different from anyone else’s. Sure, disability could be around any corner, but that was always true. My athlete brother-in-law is much more physically impaired then I am, from bad hips and knees from basketball. Life doesn’t give anyone a free pass, and what happens to me will be part of my personal adventure. I have made some big changes to my diet and I have always exercised a lot, and in some ways I’m getting healthier than ever before. Having a chronic disease also helps me to appreciate everything more, which is a gift for sure.

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Re: New to the concept of chronic illness

Post by Zyklon » Mon Jul 02, 2018 10:40 am

Welcome.

Try to accept that you have a disease and deny being unhealthy. Almost 1.5 years after diagnosis with 6.5 EDSS score, I feel god damn good and healthy. Yea I know one attack can change everything but I do my best to delay/prevent it.

Anti-depressants can help you. Faith is another thing that helps me. Stay strong, spend time for your body and mind. Cheers ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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