Beginning diagnostic journey, pretty sure it is ALS, crippled with sadness and fear, general advice please
- Thread starter Marnes77
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Thanks everyone.
Affected - that's it. Apart from the sorrow, shock, terror and the rest, there is also the disbelief. You never think you will find yourself in a situation like this. This is what happens to "other people". Keep asking myself is this actually happening? It's a living nightmare.
Sorry. I hate to sound so negative. But this ain't no teddy bear's picnic. And that's for f****n' sure.
Affected - that's it. Apart from the sorrow, shock, terror and the rest, there is also the disbelief. You never think you will find yourself in a situation like this. This is what happens to "other people". Keep asking myself is this actually happening? It's a living nightmare.
Sorry. I hate to sound so negative. But this ain't no teddy bear's picnic. And that's for f****n' sure.
affected
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You can open a thread now in the CALS section if you want and we can welcome you properly in there. Around here I get called Tillie, we will walk this with you.
Nikki J
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You also can post in newly diagnosed or general. Anywhere really except the PALS section. Be aware that PALS are not supposed to post in the cals section so you won’t get feedback from them there. I very rarely do post in cals because I am a former cals too but tend not to because it confuses other pals and makes them think they can post too
use cals if you want to hear exclusively from cals or if the subject matter might be distressing for pals
use cals if you want to hear exclusively from cals or if the subject matter might be distressing for pals
Nikki J
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I am so sorry. You are definitely allowed to grieve and you need time to absorb the shock. everyone deals in their own way and time. It does eventually get better hard as it is to believe now. Should you find yourself stuck in this mode after several more weeks please consider getting help in the form of counseling and perhaps medication. Right now what you feel is normal but don’t hesitate to ask for help.
how is your partner doing?
how is your partner doing?
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Thanks guys. Will respond properly soon and start a thread on CALS forum. Just sitting here in a state of complete and utter sorrow before i collect my little girl from school and try to act normal. Currently signed off work. Utterly overwhelmed with grief. Can barely function. Seeing a counsellor. Just venting to you guys while I have a few minutes because you are the only people I know so far that truly understand what I am going through. Any words of support appreciated. Just so broken.
MupstateNY
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Marnes, have you guys told your 11yo?
Here's how I told my 19yo: he helped me plant an arbor vita one day in the fall and he helped me a lot -- e.g. lifting me up by my underarms when I was too tired and weak. Digging, adding soil amendments, etc., etc. We went inside to take a water break, and then we were going to put in the other thing I had bought -- a red climbing rose. I said, "I guess you've noticed that something is kind of weird with me (speech slurring, weakness). I don't have an official dx yet, but I personally am pretty sure. It's probably a neurological condition. Some people progress quickly and some people slowly. I don't know how quickly I would progress. There's no cure." Tears started rolling down his cheeks and I stood on the bottom step of the stairs to make a hug more comfortable -- he's 6'3" now!
You might not be ready to share the news with her yet. For now you might be more comfortable telling her something briefer -- e.g. "I'm very sad about something personal. I don't want you to feel that there's something wrong between us. I need to cry a lot and be sad, for now. I don't want my sadness to be contagious for you -- so I thought it might help to tell you what's going on with me." Or something like that. You could write it down if you can't spit it out, or you could ask your partner or someone else to help you.
Children are often amazingly perceptive.
Okay, enough about your daughter. Now I'd like to focus on you. Have you and your therapist identified any settings or activities that help you feel better, even if it's fleeting? For me, it's puttering around in my garden. In winter I like to look at the structure of trees without the leaves. I like to look at them in different sky and light conditions, but my favorite is twilight.
I do understand how you feel -- it is definitely devastating news -- but I'm concerned about the overwhelming, relentless sadness you're describing. Would you mind doing me a favor? Go to a walk-in or ER, or book a sick appt with your primary, and show the provider some printouts of some of your posts here? I'm concerned about the depression you may be in. Remember, a problem share is a ... I can't remember how it goes after that.
I hope you can find some relief and eventually some joy in life again.
Regards.
Here's how I told my 19yo: he helped me plant an arbor vita one day in the fall and he helped me a lot -- e.g. lifting me up by my underarms when I was too tired and weak. Digging, adding soil amendments, etc., etc. We went inside to take a water break, and then we were going to put in the other thing I had bought -- a red climbing rose. I said, "I guess you've noticed that something is kind of weird with me (speech slurring, weakness). I don't have an official dx yet, but I personally am pretty sure. It's probably a neurological condition. Some people progress quickly and some people slowly. I don't know how quickly I would progress. There's no cure." Tears started rolling down his cheeks and I stood on the bottom step of the stairs to make a hug more comfortable -- he's 6'3" now!
You might not be ready to share the news with her yet. For now you might be more comfortable telling her something briefer -- e.g. "I'm very sad about something personal. I don't want you to feel that there's something wrong between us. I need to cry a lot and be sad, for now. I don't want my sadness to be contagious for you -- so I thought it might help to tell you what's going on with me." Or something like that. You could write it down if you can't spit it out, or you could ask your partner or someone else to help you.
Children are often amazingly perceptive.
Okay, enough about your daughter. Now I'd like to focus on you. Have you and your therapist identified any settings or activities that help you feel better, even if it's fleeting? For me, it's puttering around in my garden. In winter I like to look at the structure of trees without the leaves. I like to look at them in different sky and light conditions, but my favorite is twilight.
I do understand how you feel -- it is definitely devastating news -- but I'm concerned about the overwhelming, relentless sadness you're describing. Would you mind doing me a favor? Go to a walk-in or ER, or book a sick appt with your primary, and show the provider some printouts of some of your posts here? I'm concerned about the depression you may be in. Remember, a problem share is a ... I can't remember how it goes after that.
I hope you can find some relief and eventually some joy in life again.
Regards.
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MupstateNY - what a beautiful, kind, caring and considered response. Thank you so much.
I will respond properly soon. But please know I am aware of my reaction here and doing all I can not to go under, and to prioritize the wellbeing of everyone in this unadulterated f***ing s***show as best I can. That includes my own wellbeing.
You, and everyone on this forum, are really helping with that. I hope to help others as you are all helping me when shock passes and more strength kicks in.
Usually I am quite funny too. I have always found laughter to be my religion. So hopefully I can deliver some lolz in time.
Thank you everyone. The club nobody wants to join, but which we would be lost without.
Sending love, support, strength and continued gratitude to you all.
Xxx
I will respond properly soon. But please know I am aware of my reaction here and doing all I can not to go under, and to prioritize the wellbeing of everyone in this unadulterated f***ing s***show as best I can. That includes my own wellbeing.
You, and everyone on this forum, are really helping with that. I hope to help others as you are all helping me when shock passes and more strength kicks in.
Usually I am quite funny too. I have always found laughter to be my religion. So hopefully I can deliver some lolz in time.
Thank you everyone. The club nobody wants to join, but which we would be lost without.
Sending love, support, strength and continued gratitude to you all.
Xxx
MupstateNY
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Yes, when you're able to get in touch with your sense of humor, that will be great progress. It's too soon now.
Later, when you're feeling better, read this later -- a few years ago, my son, the empathetic one, was waiting with me in an office at a bank where we wanted to open his first bank account. We had to wait a WHILE. So my son, bored, slipped off one shoe and started doing "toe push-ups" on the edge of the desk. He's creative that way.
He also drives me nuts with his poor sleep hygiene....
Later, when you're feeling better, read this later -- a few years ago, my son, the empathetic one, was waiting with me in an office at a bank where we wanted to open his first bank account. We had to wait a WHILE. So my son, bored, slipped off one shoe and started doing "toe push-ups" on the edge of the desk. He's creative that way.
He also drives me nuts with his poor sleep hygiene....
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