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Old 04-08-2013, 07:48 AM   #1
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Shock and anger

I was diagnosed with LGM E2.

Certain places in my house I could still get up but this morning the support I had failed. I was stuck

I found this piece on Google

the disorder may seem to suddenly get worse when a loss of function occurs. For example, a person may not notice the rate of progression until they find it impossible to rise from a chair, or raise an arm to brush his, or her hair. When the muscle strength falls below the minimum level needed to accomplish a task, it makes the disease appear to progress rapidly. This is called the "stair step" phenomenon in which progression seems to stop for a while, then suddenly worsen.

This is exactly that is happening to me. I am frustrated, sad, angry and been crying the whole day so far

I think life is cruel to take away my independence just like that and I do not even have a husband or boyfriend to help or just ease the pain

To make matters worse I might develop heart complications. With my luck this will probably be the next step in my life

I don't know how to handle this. This worst thing that can happen to me is to take my independence away. This disease is a daemon in my eyes taking what he wants when he wants to

Just releasing a bit of anger

 
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Old 04-09-2013, 12:11 AM   #2
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Re: Shock and anger

I'm sorry to hear this
I see this in myself too and I understand the anger you are feeling. I'll be going along "ok" and then one day I'll wake up and feel like I've lost a lot of strength. It makes me feel so hopeless and I have to learn to get used to a new "normal"
Every year I lose more and more and it is very frustrating. I find myself pulling away from all kinds of activities. I quit volunteering at the kids' elementary school because it's too hard to walk around all the kids running around. I can't go grocery shopping on my own anymore by myself. I don't enjoy family gatherings like I once did because I'm so different than all the others. I can't enjoy the same activities and I hate sitting around watching everyone else. I'd rather just be home. By myself.

Life does seem cruel. I hope you can find things that you can still enjoy doing.

And about the husband and boyfriend - I find that my husband doesn't always understand me or make the pain any easier!! It's hard for even him to relate to me. I often feel I am going it alone!

 
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Old 04-19-2013, 01:36 PM   #3
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Re: Shock and anger

Mandy and Sarah,
I wish I could send you some great ideas but there just aren't any. I have been searching,reading and asking questions for a long time. Not much help. It seems to be a live and learn thing and lots of trial and error.

I decided that I could be relatively happy if I never had to sit down and never have to go to the bathroom - my nightmares if I had to go out.LOL How do you explain this to people when you don't understand it yourself.

I now have to rely on someone anytime I leave my house. I can't walk very far-I use arm crutches-I can't get in and out of a car by myself and we have tried several - they need to be low for me to get in and high so I can get out.

My arms and legs are different day to day.Can't rely on anything.

Mandy I hope you are having a good day. You used to be so upbeat but I know how this wears a person down. Hang in there!!!!

My kids,grandkids,and yes 1 great granddaughter keep me going. We do what we can and at least they understand and do what they can.

I know its hard but look around and there is always somebody worse. If they can do it so can we.And believe it or not we all have something to offer.

Later Dreaman

 
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Old 04-21-2013, 04:24 AM   #4
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Re: Shock and anger

Hi DM

I think I'm going through a bit of a rough time at the moment. I was quite happy with my body but all a sudden changes in my body is making me scared

I don't want to rely on anyone constantly help me and I want my independence back.

I burned myself quite badly on my stomach and this is taking sooo long to heal. Every time I bend forward I want to scream in pain. To make matters worse I kinda have to wear a tank top to let the burn "breath" whatever that means and believe me that is not an attractive look

I am feeling a bit better and do realize that if I struggle to get up place I could still get up I just sit a breath to relax myself and try again

As I'm sitting here I still have to go shower and that is a bit of a stress time for me as the fear of falling in the shower and having to call my son to pick me up

I think he will have nightmares forever seeing his mom naked.

One thing is for sure I will get my humor and my positive outlook back and then my posts will be the person I used to be

 
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Old 04-22-2013, 01:00 PM   #5
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Re: Shock and anger

Mandy,

My heart goes out to you. It's no wonder you are so down I hope you mend soon. That is all you need on top of all the other stuff you deal with day to day.

I haven't fallen in the shower yet but almost everywhere else. I know that fear!!!!!!!! very well and don't wish it on anyone

Thinking about you and hope you have a better day today.

Later Dreaman

 
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Old 04-23-2013, 05:51 AM   #6
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Re: Shock and anger

Something I did last summer helped me a lot.

My family is busy. My husband is self employed, my son is in school and has many activities and my daughter has left home.

I am alone sometimes 12-14 hours at a stretch. Taking a shower, getting dressed, getting my own lunch, etc., is scary. I use my powerchair to move around the house, but I have to stand up/walk for certain things.

I got a life alert system. If I should fall (which I did in December but my guys were home) at least I'm not totally alone.

 
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Old 04-23-2013, 11:00 AM   #7
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Re: Shock and anger

M

Good for you. The decisions we have to make whether it be a cane, a lift chair, a power chair an alarm system etc. are hard but usually after we get over our procrastinating self we find we should have made the decision sooner.

I finally relented and rented a scooter at Sea World and I had a great time. My stubbornness needs to move over.

Have a nice day.

Later Dreaman

 
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