Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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How to be prevented differently?

Tesinato
Tesinato
I'm curious about something. As my earlier forum post, I was hospitalized this weekend. Since then, my family has been treating me like I'm plagued and can't do anything. It almost seems like I'm back with my ex, as I'm not really allowed to do anything. I understand that it is probably terrifying for them to see me so weak, but I feel so useless when I'm not allowed to do anything. Is there anyway for me to change their perception about my MG. I tell them I'm feeling capable of doing little things, but they tell me that it is ok, you go rest. I really don't want to be back in this position, as that has been my life for 4+ years with my ex.
Kimber71
Kimber71
You're not going to want to hear it but I think that is right for a few days. Just because you feel better momentarily doesn't mean that you have recuperated. You and they need to be weaned slowly. As you can show them over time that you really are doing better then I think they will ease up.

Perhaps breathing therapy will help you breathe easier throughout the day and ease their fears.

Kimber
copperzincbear
copperzincbear
I would give it a few days. I think you're really afraid that things are going to end up like before but it's only been a couple days. You might be able to get your doctor on your side when you follow up with them. I know they want us to balance with exercise so our muscles don't atrophy.
deleted_user
deleted_user
Kimber, I got that same feeling after my hospital trip, I felt like every one thought that I needed a baby sitter. Every one slowly got over this treatment.
Loosing my independence and control of my life is my greatest fear.
Their greatest fear was loosing me.
Will
Kimber71
Kimber71
I agree the majority of us have been the go getters in or family and it its not easy to be the one on the receiving end.

Kimber
Tesinato
Tesinato
Think I fear most that it will be like my marriage was. Honestly, it almost feels like they don't trust me like they did the week before. I know pretty well my limits, and what I can and can't do, and when I need to stop and rest, vs being able to do stuff.

I plan on seeing where it goes, but I do worry. I am scared that I'm going to be forced to do nothing again, and while I did it for my ex-wife, I don't think I can do that for my parents. For her, I did it solely based on that I loved her and didn't want her to have to do more work, and thought it would make her happy. I find that I don't have the same feeling for my folks like her, so I sense it will be a struggle if they do force me to be inactive.

I'm with you Will, I am afraid of losing my independence and mobility. I already feel so dependent upon everyone, but I like being able to be useful sometimes. It is the little things that keep me motivated.