Having one of those days

[starente15]

Hi all. It's one of those days where my mind has gotten away from me despite trying to stay occupied. We're three weeks after diagnosis and I can't even imagine how I will make through whatever is to come. It feels unbearable to have to watch and witness the decline of someone you last saw as healthy. How does anyone do this? I'm trying the 'one day at a time' approach but it's a struggle.

 

[Atsugi]

Somehow it works out.

My strategy was to keep myself very busy. I simply spent 20 hours a day looking after my PALS, learning about ALS, modifying the house, etc.

 

[LoveMyKids]

I'm sorry! It is so very hard. Sometimes it is a take one hour at a time strategy. Some days are going to be tough. On days when I am stressed, I try to indulge myself some. I get busy if I need to work out frustration or I sit around if I need to relax. I always try to reach out to someone, even if I am not discussing ALS related things. It helps to have contact with other people and quite often it distracts me and lifts my spirits.

Hang in there. You aren't alone!

 

[MaxEidswick]

>Hang in there. You aren't alone!

Ditto that!

 

[4tloml]

"How does anyone do this?"

Come to this site, where everyone's situation is a little different, but we are all in it together.

Whether it's to blow off steam, seek advice, share a concern, encourage another, find encouragement, or have a laugh, all of those are available here.

 

[affected]

I don't know if this helps, but I often felt like you do.

I felt that I just bumbled along and muddled on through, yet people were telling me what an amazing job I was doing. I would look at them kind of blank and wonder if I was supposed to make some reply...

I felt despair, I felt fear, I wanted to curl up in a corner.

Yet, somehow, I made it through every day! I chose to care for and love Chris through this every single day.

Like Mike, I kept myself very busy doing all I could to provide the highest quality of care I could manage and organise.

Having this place was a lifeline.

All you are feeling is so normal, yet somehow we rise above those feelings and make it through, even if it feels now that isn't possible.

hugs

 

[cheerleader]

Tillie, you said it all for us CALS!

 

[skipper66]

I am so sorry that you or any of us have to go through this. You are not alone. We will be here to support you as best we can. You can always stop by the Pub thread and the Come for Tea thread to if you want to stop by and share a laugh or talk about things unrelated to this monster. Sending you a hug, Kim

 

[starente15]

Thanks everyone !

 

[GilWest]

I find caring for Mom strangely relaxing. It is less stressful than my actual job. I turn Mom every two hours, get her suctioned and comfy when needed, and then I have an hour or so where I can do other things. Home health will come if things get really dicey. The only thing is scheduling my sleep to get up every 2 hours and turn her.

 

[vzandt]

I muddle thru...and when people tell me how strong I am..I tell them I'm faking it....because I am

 

[GilWest]

I muddle thru...and when people tell me how strong I am..I tell them I'm faking it....because I am

I always say, "I really cannot make things much worse, can I?"

 

[Gembead]

i hope that i can be as brave as all you CALS and get thru whats ahead, its amazing what we can do when we are in love.
love Gem

 

[gooseberry]

When things get really tough I take it hour by hour and sometimes task by task. In our house we all feed off each others emotions so when Steve sees me upset he gets that way and my son gets very upset. I have said it before but hide in the bathroom if you need 5 minutes, the garage wherever. Sometimes a few minutes with a few deep breathes can really help. We all understand how hard some.days can be....sometimes its not the tasks to be done its the war inside you are fighting.

 

[Music67]

Nice to see that 95% of the people contributing here in this thread are SUPPORTERS rather than PALS. Great to see others involved - I really appreciate it.