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Sweetleaf
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09 Mar 2024, 12:35 am

LIke apparently I have a weird genetic mutation thing that effects my muscle development, they thought it was muscular dystrophy but the kind they say really only males get so idk its a whole weird thing but yeah I don't have md, but I do have some kind of muscle condition that they have not sorted out what it is yet. but I have recently tried to get more active and riding a bike and walking kind of far still really wears me out even as much as I work on it.

But idk sometimes my boyfriend can't understand how I feel so I feel like sometimes he pushes me too hard to overcome things that might not be so easily overcomable. But also he has probably never dated somenone quite like me before and I know he loves me...but yeah its been an ongoing thing so like idk could be I do lose the use of my legs as I age...I don't want that but like something is wrog with my leg muscules so I don't want to get too attatched to being able to walk since that could potentially go away with my condition.

I don't like the idea, but sometimes working out my legs feels like I can't do anymore, but I don't want to lose the use of them...but that could be coming for me. I beat all the odds for Muscular dystrophy in my young life, but what if it gets me now. Like I beat the not being able to walk part for my youth but now at mid 30's its coming at me and idk at this point may be inevideble but I always knew that could . but it sucks cause i don't want to inherit useless legs but they keep working more worse and worse so idk. Like I forgot about the muscle thing, but I think it is really effecting me now.


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Sweetleaf
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09 Mar 2024, 1:14 am

Well whatever if my legs give out, I'll just get one of them old people scooter chairs to get around.


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blitzkrieg
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09 Mar 2024, 6:48 am

I am sorry that your legs are potentially not going to work in the long-term. I hope that by some miracle, they stay like they are now. Facing an uncertain future about mobility is not a pleasant thing to reckon with.



autisticelders
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09 Mar 2024, 7:56 am

so sorry you have to deal with all of this, life is so difficult in so many ways, and some people really get way more burdens to carry, it might be too soon to do anything (your post says you don't know what to do)

but learn all you can about this new "thing" and try to make connections with others who might have personal experience with it too. Self care always first!
Sometimes you can get good input from others with more experience. Check to see if there are support groups on line for it all. speak up and ask for help if it gets too much , it sounds like you have caring people in your life.


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CockneyRebel
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09 Mar 2024, 3:25 pm

Sweet Pea hugs.

I have sore legs that are stiff sometimes. I take things one day at a time. I hope that a miracle happens to you and your legs will be limber for a long time.


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ToughDiamond
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09 Mar 2024, 5:45 pm

Yes it's difficult to do painful things when the reward (or avoidance of the punishment) doesn't happen right now but might happen some time in the future. Must be like giving up smoking tobacco, in a way.

I would think it might help to keep the exercise moderate. Gentle pressure on oneself may be more successful than expecting too much of yourself. And many exercise enthusiasts say that it's important to take a break every few days.



ASPartOfMe
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09 Mar 2024, 6:01 pm

If you name the mutation even if they do not know about it, somebody here maybe able to research it to the point of knowing more then your doctors.


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