New to the concept of chronic illness
Posted: 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.
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.