Exhaustion and Frustration with Family

[Seahorse714]

I have recently been getting more tired, taking naps and when walkingtbe dogs around the block a couple of times I suddenly had to sit down in the road It is hard to explain the exhausted feeling that hits me. I think it is my stomachs muscles. I feel like my husband and kids (18, 19) don't understand and are not very understanding. It has been getting harder and harder to climb stairs. Sometimes I sleep when I come home from work for hours and have to force myself to get up. I think about all the things that need to be done around the house that are not getting done. It's very frustrating.

 

[Big Sky]

I know exactly how you feel. I was diagnosed with als in November. I try to explain my fatigue and exhaustion to others. It is a feeling only someone with als can understand. I too feel great weakness in the mid section and in my limbs. I find that it is almost a paralyzing feeling. Many non als people try to compare it to their own tired muscles. I am 55 years old and still farm. I am fully mobile but most of the time all I want to do is lie down on the floor. I just joined this forum as I found out that it is difficult to talk to others how I feel. Even the doctors and other caregivers can only imagine how it feels.

 

[Seahorse714]

Yes!! The statement "all I want to do is lay down on the floor" is exactly how I have been feeling. And when you said paralyzing feeling that to kind of describes that feeling that comes over me when I was walking around the block. I just sat on the pavement and wanted to lay down. I get really frustrated at my husband when he says things like you need to exercise more or you need to eat healthier. Today at work I was sharing with a coworker that feeling and she said perhaps I was just out of shape. I am sorry about your diagnosis. I was diagnosed with Mills Syndrome in 2015 which is basically unheard of and rare. The term is not used much anymore but basically MND not specified. Which again is frustrating because I want concrete answers. Thanks for replying to my post. How long were you having symptoms before diagnosed?

 

[Big Sky]

I started having severe cramps and spasms in my mid section with a with loss of dexterity in my hands as much as 3 years ago. Family doctor said to drink more water and get used to getting older. It wasn't until a chiropractor examined me last Sept, did anyone have a clue to what was happening. I also felt that I was getting weaker much faster than normal throughout my body much faster than what would be normal from aging.

 

[swalker]

Seahorse,

I can so relate to feeling tired. I can sleep 20 hours a day, but usually get by with 12 to 14.

Many don't seem to understand how fatigued I get. Sometimes I just have to drift off to sleep.

Fortunately I have my comfy wheelchair for sleeping when I am out and about.

Naps really help to refresh me. Even short naps make a huge difference for me.

In the later stages of my professional career (I was an executive) I became very familiar with getting to the end of the day and having important stuff that was not yet done. I realized that I could not do everything and that honing my skills at prioritizing and delegating tasks was an essential difference between success and failure.

I regularly apply those skills now and it makes a huge difference. I still try to do all that I am physically capable of doing. But, I recognize that there are things I can no longer do. I prioritize things so that I do the items that really require my special knowledge or skills and attempt to delegate the rest to family and friends.

I am far from perfect in doing this, but I believe it has made a very positive difference.

Steve

 

[gooseberry]

Sitting down with your family and providing them with information may help. Explain how your muscles spasm and nothing helps but it makes the muscles exhausted. Have a list ready of things you need or want taken over.....from dog walks, to grocery shopping, to cleaning. Your goal must be to live life fully and save energy where possible.

 

[Seahorse714]

Sitting down with your family and providing them with information may help. Explain how your muscles spasm and nothing helps but it makes the muscles exhausted. Have a list ready of things you need or want taken over.....from dog walks, to grocery shopping, to cleaning. Your goal must be to live life fully and save energy where possible.

Thank you very much.