- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
That is what this forum is to me. I am happy for any constructive, supportive things I can do for others but I honestly just love how I can say what I mean here about my own life.
People ask me how Brian is, bless their hearts. I appreciate it, and I say he is okay/stable. I may change that to " as well as can be expected". He is progressing, he is very sad, we might do a trial and maybe just maybe Radicava if that pans out. He can still be on his own while I work but is sad to be so. He is bored and lonely I think and would really be going nuts if it were not for our animals.
Brian can do less and less and that is sad as h2$$! That's that truth.
My mom had a bad fall three weeks ago and lay on the floor of her apartment for 36 hours because she forgot her Lifeline alert. She is 81 and remarkably broke nothing. She is however in rehab, doing well, and due to be home in about two weeks. So that's good. Meanwhile I am running around seeing her and dealing with her cats in addition to all my stuff at home and at my full time job. I wish I had time to be tired, hey I did find time to get sick myself!
About three weeks ago, I got a cold. I am still coughing and bring up phlegm - gross but nothing that has not happened before. I will give it another week or two and go in if I still have it or it gets worse. My last bout of this was 3.5 years ago and went on six weeks in spite of antibiotics. It's just another thing to deal with.
Last week, we went to our beautiful North Shore, stayed on Lake Superior which we love to do. It was really nice. It was also a lot of work with a husband who needed more help. I also could not entirely stop wondering if this was the last time. The season is ending here in Minnesota, and it's not looking so good for us for next season. How was your vacation? People kindly ask. Great, beautiful weather I say. It was also sort of hectic. It was also bittersweet.
I really try to enjoy the moment, I really try to help Brian enjoy the moment. I wish we could both be more like those boundlessly joyful people from ALS books. I see us more like a Norwegian author who wrote "Rowing Without Oars". She was in her late 40's with a successful career in journalism and young kids at diagnosis. She was not depressed, but quiet and stoic. It was what it was. That's more like us, mostly.
I have a feeling that I have a date at some point, when I can get someone to be with Brian for a night (lol, my mind just went somewhere naughty) where I check into a hotel room and just lay on a bed and wail and luxuriate in some serious self pity. What was once contemptible to me not sounds like a big treat. Hats off to the pity party!
I vascilate between thinking "how dare anyone have expectations of me, my husband is terminal for freaks sake" to just continuing to put one foot in front of the other, not wanting to be " different". I think of the lyrics " Take a good look at my face, you'll see my smile looks out of place, you'll see the tracks of my tears". Except those tears are mostly unshed. Except between mom, job, and husband I feel like if I stop the world will fall off its axis.
So another big glass of water, new box of Kleenex. Get that good nights sleep, take the vitamins and forward march. Thanks all for helping me march.
People ask me how Brian is, bless their hearts. I appreciate it, and I say he is okay/stable. I may change that to " as well as can be expected". He is progressing, he is very sad, we might do a trial and maybe just maybe Radicava if that pans out. He can still be on his own while I work but is sad to be so. He is bored and lonely I think and would really be going nuts if it were not for our animals.
Brian can do less and less and that is sad as h2$$! That's that truth.
My mom had a bad fall three weeks ago and lay on the floor of her apartment for 36 hours because she forgot her Lifeline alert. She is 81 and remarkably broke nothing. She is however in rehab, doing well, and due to be home in about two weeks. So that's good. Meanwhile I am running around seeing her and dealing with her cats in addition to all my stuff at home and at my full time job. I wish I had time to be tired, hey I did find time to get sick myself!
About three weeks ago, I got a cold. I am still coughing and bring up phlegm - gross but nothing that has not happened before. I will give it another week or two and go in if I still have it or it gets worse. My last bout of this was 3.5 years ago and went on six weeks in spite of antibiotics. It's just another thing to deal with.
Last week, we went to our beautiful North Shore, stayed on Lake Superior which we love to do. It was really nice. It was also a lot of work with a husband who needed more help. I also could not entirely stop wondering if this was the last time. The season is ending here in Minnesota, and it's not looking so good for us for next season. How was your vacation? People kindly ask. Great, beautiful weather I say. It was also sort of hectic. It was also bittersweet.
I really try to enjoy the moment, I really try to help Brian enjoy the moment. I wish we could both be more like those boundlessly joyful people from ALS books. I see us more like a Norwegian author who wrote "Rowing Without Oars". She was in her late 40's with a successful career in journalism and young kids at diagnosis. She was not depressed, but quiet and stoic. It was what it was. That's more like us, mostly.
I have a feeling that I have a date at some point, when I can get someone to be with Brian for a night (lol, my mind just went somewhere naughty) where I check into a hotel room and just lay on a bed and wail and luxuriate in some serious self pity. What was once contemptible to me not sounds like a big treat. Hats off to the pity party!
I vascilate between thinking "how dare anyone have expectations of me, my husband is terminal for freaks sake" to just continuing to put one foot in front of the other, not wanting to be " different". I think of the lyrics " Take a good look at my face, you'll see my smile looks out of place, you'll see the tracks of my tears". Except those tears are mostly unshed. Except between mom, job, and husband I feel like if I stop the world will fall off its axis.
So another big glass of water, new box of Kleenex. Get that good nights sleep, take the vitamins and forward march. Thanks all for helping me march.