[southblues]

My husband had to go to the hospital due to a heart issue. It looks like he will be ok and I am infinitely grateful for that. I realized today just how much he does to help me. I am so tired. I don't think that I could get by without him. I wonder how those that live alone survive this illness......

[pingpongman]

It has to be close to unbearable. I am so lucky I have the most wonderful wife in the whole world.
Mike

[southblues]

Give her an extra big hug Mike.

[StephC]

I am glad to hear your husband Is ok.

Living alone is difficult

[Lesmom96]

Originally Posted by southblues

My husband had to go to the hospital due to a heart issue. It looks like he will be ok and I am infinitely grateful for that. I realized today just how much he does to help me. I am so tired. I don't think that I could get by without him. I wonder how those that live alone survive this illness......

I am glad your husband is going to be ok My husband works out of town so he is home only on weekends, but my kids are here during the week, and they are somewhat helpful. (maybe?) My husband is going to change jobss oon so he will be home every night and I think that will be WONDERFUL!

[Juanitad]

I live alone, but am fortunate to have a great daughter and son-in-law about 5 minutes away. It definitely helps at times. I'm glad your husband is okay and wish you the best.

[alice md]

I don't live alone, but my husband would have to stop working if he had to take care of me.

I have a companion with me during the day and my husband or one of my sons is with me during the evenings.

If no one is with me (which rarely happens) I stay in bed or sit in my couch, with my respirator near by. At work I have my respirator on the desk next to me.

I fully depend on others in many daily activities. It was a very hard adjustment for me and those around me, but now it has become our normal life.

I don't think of "what will happen if"...I just try to make the most of every day-for me and for others.

[Anacrusis]

Originally Posted by southblues

My husband had to go to the hospital due to a heart issue. It looks like he will be ok and I am infinitely grateful for that. I realized today just how much he does to help me. I am so tired. I don't think that I could get by without him. I wonder how those that live alone survive this illness......

First of all glad he is OK

In the beginning I remember horrendous brain fog and my husband always´pushing´me with some new information how to work a new gadget or something. Or to do manual work whilst very pregnant...

Next came an acceptance phase. Four years went by and he did EVERYTHING
I could no longer grasp or hold out bed sheets to change them, squeeze water out of a cloth, peel a single potato, hang up washing - even pull washing out of the tumble dryer. So he did it all.... The hardest was his 48 hour shifts when I was alone with a small child and had difficulties dressing him (especially stretching and pulling small stretch clothes was absolute torture)

Last came the impatient phase! Now when I come home from work and have done overtime I should also clean the house! In a short period he will retire and I wants me to keep but somewhere in a warmer climate! It is good we communicate well with each other - taking on conscious OR unconscious roles on either side of dependance is a LOT to talk about


It´s a lot to process, a lot to be thankful for and a lot to gauge constantly when fluctuating symptoms affect your daily life AND your relationships.......

Sorry, blah blahing a bit much as am running late!


Anacrusis

[alice md]

Now when I come home from work and have done overtime I should also clean the house!

I think this is one of the hardest aspects of MG-prioritizing and doing it in a way that both we and those around us can understand.

People can rather easily understand and be empathic if you are unable to do everything. But, they (and you) find it hard to understand that you can do one thing (of your choice) and than nothing more.

It seems reasonable that if you put extra effort at work, you can do so at home when you come back.
It may also give the feeling that you don't care about your home if you use all your energy at work.
Or that you have the energy to do what you like, but none left to do what you don't like.

You and them have to find some reasonable consistency in your performance.

The way to do this is to find a new balance of work, leisure, household chores within your changing abilities. Increasing all with each improvement and decreasing all with each worsening.

[Anacrusis]

Originally Posted by alice md

Increasing all with each improvement and decreasing all with each worsening.

Absolutely!

And if I take that, a step back and look at the last 5 years.....

The decreasing was easier – it happened very quietly, progressively and consistently. When you can´t do anything then everyone has a clear role.

The increasing is harder for everyone. When you can only do one thing then Suddenly.....Everyone wants it to be their thing!


Anacrusis