one_itchy_ball18 karma2014-06-08 20:21:30 UTC
I don't have sickle cell but I know where you're coming from. I'm 39 in a couple weeks and probably only have a few years to live myself. I have some serious things wrong with me but its the little things that bother me the most.
I have peripheral neuropathy (basically nerve damage) from diabetes and a stroke I've had. It messes with my balance when a room is too dark or I close my eyes to wash my hair in the shower because my brain doesn't sense my feet like it used to so it needs visual cues.
I'm also epileptic because of the stroke and since the neuropathy causes twitching, I sometimes get little anxiety attacks thinking I might have a seizure.
Anyway, my question is, what are the little things that bother you aside from the big things? Especially those things that might be directly related to your disease.
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one_itchy_ball8 karma2014-09-25 12:13:11 UTC
I can 100% relate to your situation. I know how isolating it is to have medical issues that keep you from being the person you once were. It sucks things have gotten so bad for you.
I too have a genetic disorder. I have Alport Syndrome. It's a disease affects a type of collagen found in the eyes, ears, and kidneys. Due to this, my kidneys are deteriorating and fast. I'm actually in stage IV renal failure. I've also lost over half my hearing.
The renal failure caused congestive heart failure which lead to a couple of strokes from which I was fortunate enough to recover almost fully expect that because of the holes in my brain I'm now epileptic. In my last seizure I ripped a toenail right off. And oh yeah, I'm also diabetic.
Once my seizures started I was unable to work anymore so I too am disabled. That was a major blow to my social life. I was able to still hang out with my friends a bit but once I had my first public seizure that was it, all my friends were gone. I want to blame them and often do, in my own mind, but I get it. Who wants to be responsible for that? Even my sisters only come around when they have to.
The thing is, I was really trying to be the same person I used to be but it didn't work that way for me. Because of my hearing I was already out of the loop on every conversation and people get tired of having to shout at you. And since my diet had to change so drastically, going out for dinner is nearly impossible. I became a glorified chauffeur before the seizures got really bad.
Speaking of seizures, I'm frightened every time I set foot out my door. Medicine controls them and my other issues mostly, but even paying careful attention to all my meds leaves me feeling like I'm on the verge of another seizure at anytime. I'm afraid to be away from my apartment for more than an hour for fear of missing a pill time.
So in the end I just sit here in a broken down Lazy-Boy recliner hoping today will be my last. Even with all your troubles I do envy you one thing. I wish I could just sleep my days away until it was over. But as luck would have it, I can't ever sleep more than about 4 hours a day. I get to be awake for my nightmare.
I'm grateful that I'm still able to take care of myself but it is getting harder. I have Peripheral Neuropathy from the diabetes which means nerve damage basically. I can't really feel my feet much anymore. That leaves me feeling off balance if I'm walking in too dark of a room. I feel like I'm falling over. I'm also getting fatter as the days go by because even mild exercise inducs seizures.
People like to believe every life is precious and meaningful. I have no friends, no wife, no kids. I can't and don't do anything to help others and I'm only going to get worse. I find no meaning in that. So anyway, yeah, soul crushing.
So my questions to you:
1) Does it help you to know others are hurting too or does it only make you feel worse?
2) Do you still have hopes and dreams beyond maybe a cure?
3) What would you like to be doing if you weren't ill?
4) Is your family around to help take care of you or do you rely on outside sources of help?
5) Have you thought about assisted suicide? I don't mean to to offend but if you're like me, suicide has crossed your mind).
Tl:dr My life sucks too.
one_itchy_ball6 karma2014-06-08 22:25:05 UTC
I know that frustration. My neurologist seems like a moron. I've been helped more by the kindness of others with epilepsy than by my own doctor. And I tried to find out about a support group to see what others do to deal with the problem and not a single one exists within a hundred miles.
one_itchy_ball2 karma2014-09-25 17:45:31 UTC
If you ever need someone to talk to don't hesitate to message me. Just remind me who you are if you do. My memory isn't what it used to be.
one_itchy_ball1 karma2014-09-25 17:39:07 UTC
No. It kept telling me it failed. Thanks Reddit.
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