Blackeyes
Active member
- Joined
- Jul 7, 2019
- Messages
- 36
- Reason
- CALS
- Diagnosis
- 06/2019
- Country
- CA
- State
- SK
- City
- Swift current
I’ve never joined an online forum before. But I’m scared, heartbroken, angry, unsure..... I could be here all day listing the feelings I have. My husband is newly diagnosed. His problems started in February and in June they sent us to an ALS clinic which is how we figured out what he had. A letter telling us to be at this clinic to meet a team of drs. We were still hopeful that it was just another round of tests.
We had two weeks to pretend before the dr took away the rose coloured glasses. They are going to start him on meds. At first they said it was to soon but a week later they said because it progressed so quickly from February..... What does that mean exactly? At the moment he has numbness in his fingers and foot. Leg twitches and aches. Can’t tie his shoelaces, has taken some bad falls.... his Job is walking. He is a line locator. So he’s walked miles and miles every day. Even with the brace he struggles. He won’t be able to work once winter hits. He barely got thru the last one.
So we are selling our house and moving closer to family and god forgive me but I love my job and having to give it up when I’ve worked so hard and put in so many hours to get where I am and to have to give it all up feels like a double whammy and I wonder will I find another job where I have the freedom I have here to do what he will need me to do and the same support from my boss and staff... and I feel guilty for even feeling like this when he is going to lose so much more.
I have read so much about the disease but have no idea what to expect and how long it takes to get to the point where he won’t be walking and there is no guide to this and I already feel overwhelmed and we’ve only just begun.
I feel like I’m standing on a ledge and just need someone anyone to tell it’s going to alright. That we will get thru this. Friends and family don’t understand they ask me if I’m ok and I want to scream I’ll never be ok again. I’m dying inside and I feel so selfish for even thinking about what I’m feeling because of what he’s feeling. He’s the one that has to go thru it. How do I help him. How do I tell him it will be ok when I don’t believe it myself?
What a way to introduce myself to you all. Forgive me for sounding like a crazy person but I feel like a crazy person. I can’t sleep I couldn’t tell you the last time I had a meal. I’m wound up so tight that I feel like any moment I am going to implode.
I came here to find someone who understands what I’m feeling. Who can give me some insight on where to go from here.
We had two weeks to pretend before the dr took away the rose coloured glasses. They are going to start him on meds. At first they said it was to soon but a week later they said because it progressed so quickly from February..... What does that mean exactly? At the moment he has numbness in his fingers and foot. Leg twitches and aches. Can’t tie his shoelaces, has taken some bad falls.... his Job is walking. He is a line locator. So he’s walked miles and miles every day. Even with the brace he struggles. He won’t be able to work once winter hits. He barely got thru the last one.
So we are selling our house and moving closer to family and god forgive me but I love my job and having to give it up when I’ve worked so hard and put in so many hours to get where I am and to have to give it all up feels like a double whammy and I wonder will I find another job where I have the freedom I have here to do what he will need me to do and the same support from my boss and staff... and I feel guilty for even feeling like this when he is going to lose so much more.
I have read so much about the disease but have no idea what to expect and how long it takes to get to the point where he won’t be walking and there is no guide to this and I already feel overwhelmed and we’ve only just begun.
I feel like I’m standing on a ledge and just need someone anyone to tell it’s going to alright. That we will get thru this. Friends and family don’t understand they ask me if I’m ok and I want to scream I’ll never be ok again. I’m dying inside and I feel so selfish for even thinking about what I’m feeling because of what he’s feeling. He’s the one that has to go thru it. How do I help him. How do I tell him it will be ok when I don’t believe it myself?
What a way to introduce myself to you all. Forgive me for sounding like a crazy person but I feel like a crazy person. I can’t sleep I couldn’t tell you the last time I had a meal. I’m wound up so tight that I feel like any moment I am going to implode.
I came here to find someone who understands what I’m feeling. Who can give me some insight on where to go from here.
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