loneliness

[Mick n Ang]

Just thought i'd say how i feel right now just so it's not keeping me up again, think maybe just having a low day. Mick's not himself today, think hes worried about how ALS is affecting his hands and arms now hes just popped off back to bed for a bit as seems to be the only place at the moment that he can get comfy, our son is away on holiday so i'm afraid with no visitors these days, your my only scource of comfort. Mick doesn't really share what is going on inside his head but I can tell somethings bugging him and he will come out with it eventually For some reason he feels its a weakness complaining about things, were as I say if you tell me maybe we can do something to help, God how I love him and wish I could take it all away.xx

 

[Miss]

Hi Ang. I know your lonley feeling. My husband doesn't share too much about how he is feeling about the disease either. I'm finding that my husband is most comfortable in his lift chair. He can move it around (up and down) to change his position, and it is wide enough to "resettle" his arms. I think he likes it because it isn't a piece of equipment. It's not a constant reminder of the illness like a wheelchair. Most of the symptoms for my husband are in his arms and hands, followed by speech, then torso and legs. He can still get around most of the house on a walker (very, very slowly).

 

[irismarie]

As a "patient" I do not want to talk about it all the time

 

[brooksea]

A lot of us are affected by loneliness and isolation, due to this thing called ALS, so don't feel "alone" in your loneliness. My husband and I are taking great pleasure in being able to watch movies together. Such a small thing before ALS, but now an important past time.

Is there anything you can do together to take BOTH of your minds off this wretched beast?

Hugs!

 

[Miss]

CJ, We should own stock in Redbox!

 

[irismarie]

sorry I got cut short last time. I DO NOT LIke to talk about it to anyone around me cos i feel so boring when I do. And as I think a lot less of myself now than I did when I could achieve so much more I always imagine others around me will see me as lesser too. And talking like a drunkard makes me FEEL like a moron. So maybe he feels all these things too.
Friends and neighbour sreally are SOOOOOOO important. Try to surround yourself when you can.
So sorry you are going through this. It is a sad and lovely place to be and you need other people, less affected, around you
LOVE TO YOU BOTH

 

[Claire]

Hi, Ang,
I could feel your heartbreak, and I know exactly where you're coming from with the communication thing- and with the liftchair - ditto on this end. I hope that tomorrow will be a better day for both of you.
God bless us all.
Claire

 

[Mick n Ang]

Thank you everyone for your kind comments and thoughts, Having a better day today and trying to take heed in everything you've shared. Went out for lunch, just to do something different together it was a struggle but the laughter and fun we had together made up for it. love to you all xx Ang

 

[Miss]

Funny, we did the same thing yesterday. Same thing, quite a struggle (especially in the Southern heat!), but we had a good time. It was a nice diversion.