Taking one Day at a time....

[SheilaZ]

When my Hubby, John, was diagnosed in Jan of this year he was having so many issues....breathing, neck drooping, no muscle in his left hand and arm, so weak couldn't hardly walk, he can't lay down...sleeps in a recliner chair do to his breathing.....was in a wheelchair by May...in a motorized chair now...but it seemed when he first started taking the Rilutek 1st of Feb....his progress had slowed down...neck was stronger, still weak....but felt good.....now seems like all the symptoms are coming back with a vengeance.....I got him a RoHo cushion it seems to help with his tailbone....he can recline a little, his breathing is a lot worse...uses his Triolgy machine most of the time....we are so Blessed and thankful, for he can still talk and eat...though he's lost so much muscle in his arms and hands...all over his body....he can hardly hold a spoon....GOD BLess him...he keeps going and never gives up.....I feel so helpless at times....watching his struggles....just little things....that we take for granted....is so difficult for him now.....yet he never complains! I see his body changing....wasting away....But I also see his fight....his strength to keep going, not ever giving up....and I love him all the more for it! I never let him see me cry....and believe me, I feel like I've turned into a crybaby....but his strength, his determination, his love for life.....keeps me strong, too.....so I'm learning not to look down the road......John and I are taking one day at a time.....and we are so Blessed with each and every one of them!!!! One Day at a time!!! Sorry for the long post....just watching my Hubby Sleep and I'm wide awake....I wish sometimes we could turn our minds off!!! Lol. Going to try to get some sleep....love and prayers for you all!! May GOD Bless each and everyone of you, always!!! You're all in my thoughts and prayers!!!

Love and prayers,
Sheila

 

[Gembead]

Sending you a huge hug Sheila, know that feeling of admiration.
Luv Gem

 

[scaredwifetx]

Sheila, also sending you a warm hug. I know exactly what you are feeling. I also know that we often watch our hubby's sleep and it causes long posts on here. I spend many nights wide awake and thinking. I also try to hold my emotions and I find that sharing my feelings with the CALS here...does help.

You can post anytime night or day. I cant explain it but I always feel better afterwards. Hugs and prayers back at ya.

 

[Aussiemndcarer]

Sheila, sending strength to you. My tears keep coming in private, and late at night but during the day I seem to get strength to carry on .
My mind seems to often go back to good memories of times past. I can dig up the most amazing thoughts on times gone. Maybe this is mindfulness? Anyway it is completely random.

 

[Nuts]

Here's another hug for you, Sheila. I often wonder why it is that this disease strikes such wonderful people. Maybe it's because we love them so much that we will care for them.

I watch my husband sleep during the day. At night he is awake and I just can't keep my eyes open. He is so peaceful right now--why can't he have that peace at night?

Posting anytime--just one of the things I love about this place.
Becky

 

[Jhill]

Another hug for you Sheila!

It's so very hard to watch someone you love going through this. We cried over every single loss. It really is continuous grief.

Please know that you are in my thoughts and prayers always.

Hugs,
Joan

 

[Aussiemndcarer]

Sheila,thinking of you and hoping today will bring you more strength. So glad you've come to this forum I'm sitting ,listening to my man breathing as he sleeps. I can't sleep this morning. My mind often flits back to all the beautiful times we've had. I try and keep future thoughts tucked away. The Cals here are such special people. Their posts help me feel as if I'm not doing this alone.

 

[SheilaZ]

Thank you, Joan...thinking of you and your family!!! Love and prayers, Sheila

 

[SheilaZ]

Thank you all for the hugs, they are all very much appreciated....sending each and everyone of you all a hug!!! I pray for you all and thank you for your kind words....I'm here to, if anyone needs to talk!!!! Though I don't get on as often as I would like....I am praying for all.....GOD Bless you all!!!

Love and prayers,
Sheila