How to mentaly and physicaly deal with losses

[CamilleQ]

Hi everybody,

I m questionning myself about how to deal with losses.

How do you manage you cannot do things anymore and it's gone forever?

In the morning when I wake up sometimes I think "I m gonna take my boxing gloves and make some boxe today" but for sur I m not...

I start thinking all the things I m gonna lost and it scare me.

What is the more scary for me is to loose my speak, how I m gonna explain my feelings, have a social life or if I have a probleme, an emergency or something like that. I feel like I m not gonna be me anymore.

I try to make little projects I can make like writing my story, I m a cooking lover and a good cooker so I want to write my recipes ( I also think it's good memories for my family when I m gonna die.) I also try to take a lot of photos.

How do you make project and do you deal with losses or futur losses?

Thank you so much for your answer, you re so helpfull and make me fell less lonely.

 

[KarenNWendyn]

I’m not going to lie. It’s hard and it sucks.

I think it’s best to anticipate losses and be prepared. For example, make sure your living situation can accommodate you in a wheelchair. Get your end of life stuff ready. See this document: Resource - Anticipatory planning - trying to stay a step ahead

But also live in the moment. You are still you. To the extent you can, travel, spend time with people you enjoy, get out of the house.

 

[KimT]

It's not easy. People progress at a different rate and that progression can change. This is an exhausting disease, and everything is worse if you're in pain. PALS have other health issues, too, and we have to stay on top of them or suffer the consequences.

I try to manage each day according to how I feel. Sometimes that works, other times the smallest thing will make me cry. It's a helpless feeling. I couldn't deal with it without drugs (Valium, an antidepressant, CBD, THC, and Oxy for breakthrough pain......meaning when the pain becomes so intolerable it stops me from even watching TV.

 

[Nikki J]

To address the speech fears it is probably the hardest thing for PALS even though I believe keeping a hand ( or even better an arm) would give function. Your voice is you. There are methods text to speech and eye gaze , foot mouse so that you can continue to communicate. Voice bank early. It easier and will be better quality if you do it before any issues start.

i also suggest signature stamps. I have 3. My legal signature. my first name and a third love, Nikki. If there are other names you go by Like Mother( not sure if you have kids) those too. Easy and quick.

lastly and do not pursue this until after your second opinion because the usual methods are not reversible stop your menstrual flow. Ablation is often the best choice. You do NOT want to deal with that if you lose hand function.

I know you didn’t ask so much for practicalities but it is easier to deal if you take charge and keep ahead of things

 

[CamilleQ]

Fortunately I am single and I have no children. Before being sick it made me sad but now I tell myself that maybe nature has done things well.
yes i also thought about the uterus problem, but currently i don't want anyone touching my body, they will destroy it a little more
But for sure I have to think about it.

if it's not too intrusive , what are your hobbies? How do you spend your time?

I try to anticipate every things I m gonna need, sold my appartment, buy a car we can put an electric weelchair in, adapt the bath room,.... it seems everything take too long and people dont understand I have no time.

I m nurse and I was working at home (went to patients home to make care) so I think I m pretty knowlegeable about what we can do but also what is difficult/impossible.

thank you everbody for answer, I feel so much help here.

 

[richdees23]

hey camille.
sorry you're here and have to deal with this. as you have already found out, this is a great resource and an awesome place to gain support. i haven't been on long, and my knowledge is minimal at best, but i can share a few small things that help me. i focus on the things i can still do, no matter how small. making a sandwich (even is it takes twenty minutes) is a victory, and i'm thankful for it. every morning is a new day and one i'm alive to experience. sunshine, music, books, loved ones. all things i can still enjoy. like you cooking was something i loved to do. i watch cooking shows all the time now. and also like you, i am beginning to write. basically, keep busy and stay thankful.

 

[Tkthiede]

Camille I totally understand your concerns. I still have some use of my hands so I do some drawing using adaptive aids. But my mainstays are reading and watching TV. I watch all the zoo and veterinary shows. I’m pretty sure I’m an expert now!

 

[KimT]

Camille, I'd like to talk about hobbies because I had to replace/adapt things that I loved and look ahead to further adaptation.
I loved photography and could easily swap out lenses in my Canon until this year. I ended up selling my camera and all the lenses and buying a GoPro camera that can be strapped on my chest or even mounted to a wheelchair. Right now I can still manage with my iPhone and that'll do until I get the GoPro set up.

I was a runner and competitive golfer. Aside from the pain, I could probably still swing a golf club on a short course but it's not worth hurting my back and I'd have to have a ride around the course. Now I still manage short walks and found the best exercise for my mind and body is a warm pool. If you like the mountains, you can "hike" with a power wheelchair. Find some of Steve's videos. He also did "adaptive skiing" which was very cool. I think you'll find some ideas of you look at the thread "Stories of Hope."

I've had neck pain and some weakness. I "read" audible books. My arms are still good so I play cards.

This is an expensive disease but I decided, with my 65th birthday coming up next month, I'd buy an iMac Pro and an 82 inch TV. They were a splurge but I'll spend many hours with both, I hope.

It's never too early to explore eye gaze technology. Lots of good threads on it here. In my opinion, learning new things helps keep depression at bay. If you read posts by PALS in Facebook groups who have a purpose, they seem more upbeat.

I don't have a family but I'm making new virtual friends at my church by participating in a class and a book club. Others will accommodate your level of disability.

 

[EricInLA]

Someone on this forum - I can't remember who - said that even though they understand their physical abilities will decline over time, they wake up each morning and decide they will not decline TODAY. I always think of that when I get in a down mood because of the disease. I can still do many things NOW and I will do them. I will worry about the other stuff later. Of course it's good to be prepared with legal documents and adaptive living conditions (I need to start with that), but I'm just thankful for what I can do right now. Sometimes when I realize that my body is changing (like right now, it takes much more effort to type than before), I let it bring me down. But I try to push that thought aside and go back to positive thoughts. I think the anti-depressant medication Lexapro has helped me with that.

I also find joy in hobbies -- cooking, reading, hiking -- and in my case, my family. Since being diagnosed, I find myself less of a disciplinarian with my kids (ages 20, 17, and 14) and just enjoying every moment I have with them. I've always been the "fun dad" but now even more so. I taught them all how to play poker, when to "hold em" and when to "fold em". We also do fun outdoor things, even though it's more of a challenge during Corona.

My newest hobby is mixology (making drinks). I'm learning about it and experimenting - our neighbors join us on our front lawn (each family at a 10 foot distance) and share drinks and appetizers. It's perfect for this crazy time of CoronaVirus. And this forum helps a lot too. Great people here.

 

[CamilleQ]

Thank you for your answers. For sur it's sucks and I feel depressed. But I try to enjoy every little things.

For now the pain and the sleep are what I struggle the most with.

All I hope is not suffer too much and die peacefully.

Sometimes I hope I m not gonna wake up in the morning and I die in my sleep.

 

[CamilleQ]

For the little joke, for now I think I know all the Youtube video, I lost myself on it. I really can say "WTF?!"

Humor is hard in english for me

 

[EricInLA]

Camille, you mention pain and sleep as the biggest problems right now. I have had only moderate pain, mostly in my legs, and I don't have a good answer. I stubbornly ignore it. Others here like Kim are very knowledgeable on dealing with pain.

But I did have a huge problem with sleep, off and on, for the first year that I was dealing with ALS symptoms. I wasn't sleeping because of depression, and then being awake at 3:00 made me even more depressed, and also sleepy during the day. It was really a terrible, vicious cycle. I would get nervous and anxious in the evening knowing that the night would be like fighting a mental war. I tried everything - sleeping pills like Ambien, anti-anxiety like Xanax, Ativan (Lorazapam), cannabis, alcohol, Melatonin, etc.. I finally found something that worked for me - Trazadone. That restored sleep and made my life much better. It is not addictive. Maybe look into that one? (As I mentioned above, I also take Lexapro)

You're going through a rough time, as we all do now and again. But hang in there. You have support here.

 

[KimT]

I take whatever gets me through the day....including naps. I was doing pretty good until my dog broke his leg and all the bending over made my back feel like someone drove a stake through it. I popped some Valium and took extra CBD/THC. If the pain continues, I'll take an Oxy tomorrow morning.

Keep your sense of humor. It helps.

I want to go to Eric's. He plays cards. That's the thing I miss most with this stupid corona virus. My iPad's card games have an algorithm and I find myself figuring them out and I can't lose. I had to give up playing Canasta because the computer was so predictable.

I know other PALS who said Trazadone was their magic bullet for sleep and even for pain.

I'm my worst enemy when it comes to pain. I overdo it knowing I'm already hurting and that causes me to hurt more.

Remeron knocks me out, especially when I takes some CBD and a Valium.

 

[KevinM]

Hello Camille. I’m so sorry for your diagnosis, but rest assured you are with caring, knowledgeable people here.

Both sleep and pain were also issues for me, but I’ve gotten them much more under control after some drug experimentation. Like Kim, my muscle and joint pain often stems from my stubborn desire to continue doing many things that I used to do, but with weaker muscles. I’ve found It is important to learn your limits, and adjust your activities as best you can. i know this is very hard for an active person like you.

i agree with Eric that the turning point for me with sleep was Trazadone, and I hope you consider giving it a try. I take two 50mg tablets about 20 minutes before bed along with a dose of CBD/THC oil, and I sleep peacefully and soundly throughout the night. Since I can still turn over in bed and get comfortable without problems (I hope you are still able to do that), I now look towards bedtime with happy anticipation instead of anxiety. Hopefully you can reach that point as well. Best wishes, Kevin

 

[CamilleQ]

Thank you so much for your reply. It always make me feel less lonley and hopless to speak with you on the forum.

For now the pain in legs is better with CBD, magnesium and Valium at night+ drinking a lot of Schweps.
Abs cramps/ uper belly cramps are still here.
Neck, shoulder and back like burning sensations are also still here but I can manage it. They are not so terrible. I think they come when I do to much or when I stay in bad position or a postition "over use" my muscles.

Yes I can still move in bed pretty well.

My mother take Tadozone, I m gonna try one tonight.

Love on for everybody here. I wich you a peacefull night or day.