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
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!
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.
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
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.
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.