35 and angry

[Nbjules]

I was first diagnosed with ALS. But recently i was diagnosed with PLS. And im happier with that diagnosis if i have to have one but im 35. My upper body seems to failing no one understands and no one wants to talk about it I'm want to go to work I want to be able to volunteer in my children's classroom I don't want to struggle to wash my hair and I know that it's nothing compared to do ALS but I'm angry no one gets me I need someone to talk to so please let me know how you got through this

 

[chally]

One day at a time!
For me being angry is part of it, staying angry is not.
I don't want to be bitter! This journey is about as hard as anything I can ever imagine , always losing another physical aspect of myself but I don't have to lose my true self. The lessons this disease has put in front of me have helped to make me the man I am today.
This is definatlely not an easy path! Sorry your here sorry we all are here but we are .
As a friend here always said IIWII. It is what it is.
Keep posting
Chally

 

[ShiftKicker]

Oh, I am so sorry. Welcome to the group, even if it's for such a bummer of a reason.

If you can, try to find a counselor or psychiatrist to check in with regularly. It serves a few purposes- a person to speak to about frustration, anger, coping skills that work for you specifically, help with sleep, stress management and someone that you can just lay it all out with. Family may not get it, nor be open to hearing how you are struggling. A third party and objective person can be a saviour of relationships- they are there specifically for you and do not judge. Your provincial health plan covers psychiatrists, who are medical doctors too, and can prescribe medications for you should you need. A particular kind (consultation liaison psychiatrist) can even help manage more than counseling and can be the person to help you coordinate your treatments over all.

With regards to anger management- decent sleep, a reduction in stress (easier said than done) and time will help reduce it. My anger always came when I was fatigued (still does) and I learned to recognize that I have done too much when I start to feel ragey. This is new for you, and likely you've had a hard time leading up to your diagnosis. I've found that as time goes by, it just gets better. There is a drastic change in expectations for sure- understand that you are going through a grieving process as you realize the future you had envisioned is likely not going to come to pass. That's a tough thing to swallow.

Anyhow, welcome to the group. It's a great bunch of people.

~Fiona

 

[Inventor]

This only means change of plans, not losing them. A different life than you had planned, but not all bad. Much better changes to concentrate on interesting stuff. And people are much nicer to you than otherwise would have been the case.

 

[notBrad]

This is a part of a reply I made in another forum when they asked me how I dealt with the diagnosis - "a terminal diagnosis is like being pushed off a cliff, once you go " what the hell ??" then what do you do for the rest of the trip down? Scream all the way down like a little child or realize that there isn't anything you can do about it and you may as well enjoy whatever you can on the trip down. "

Thanks, Brad

 

[swalker]

I am very sorry to welcome you here, but welcome nonetheless.

You are among friends here that can understand your struggles. While we have a physically debilitating disease, there are far more than just physical consequences!

Each of us must find our own way of coming to terms with the losses we suffer. Your path may differ from mine, but I will share a bit of my approach for your consideration.

I was devastated when I was first told I had a progressive neuromuscular disease. As I learned more about what this disease will do to my body I was even more devastated. It took awhile to get over the initial shock.

I quickly came to terms with it and realized that I have a wonderful life still ahead of me. My life is different, but no less wonderful than it ever has been.

Work was a big part of my life from which I derived great enjoyment. I had to give up work shortly after diagnosis. That was incredibly hard. But, I soon realized I can still contribute in meaningful ways. I provide technical guidance on tricky problems that lie within my domain of expertise. I serve on the board of a local non profit organization. I am active in church.

I have met many new friends since diagnosis. I have travelled as much as my body will allow. I have learned more about wheelchairs than I ever thought possible. I have accepted and embraced assistive technologies that allow me to participate in my community and have wonderful adventures.

All the while, I try to keep a positive outlook and share that with those around me. I am far from perfect in this regard, but I think I can still bring a ray of sunshine into the lives of those around me. I can't do much physically, but that I can and will do!

I have learned that life is too short to have a bad day. Each day is more precious to me now and I try to get as much out of each day as I can. I can't get much out of some days, but I do what I can do.

A significant part of doing this (for me) is to accept my limitations and then to work within them.

For many, anger is part of the path to accepting their new reality. Most find a way to work through that anger and many find professional guidance helpful in doing so. Perhaps that would be beneficial to you.

Steve

 

[KarenNWendyn]

Wow. This message is very inspiring to me as someone who is recently diagnosed. Thanks,
Karen

 

[Scotiaspirit]

I understand your emotions and feelings of frustration completely. It is a lot to take in. For me, I have an analogy of having to hit an imaginary "reset button", as I lose previous abilities, I reset myself to move forward, sometimes being creative in doing things I used to do in different ways. People that want to help you, allow them, they want to, and it can really help you. This forum is a wonderful place to reach out to other PALS and CALS, it is not a club anyone wants to be a part of, but once you have this disease, it is probably the club to be part of, people here have so much experience dealing with the daily challenges of living with this disease. It is certainly a challenging disease, but here you can always reach out. Despite your challenges, life can still be fullfilling. It is normal to feel angry and overwhelmed especially when first being diagnosed. Take care and wishing you better days ahead.

 

[Kristina1]

Hugs. I'm so sorry you find yourself here. I was diagnosed a few months ago at age 31. I just turned 32 this month. I have three young kids and it makes me upset and anxious when I think about the things I can't [or will no longer be able to] do as their mother. I had a reality check yesterday trying (and failing) to take my 4 year old to the grocery store by myself. It sucks. It's ok to be angry and sad.

That said.. What has helped me emotionally has been focusing on people I love and things I enjoy. We took an amazing trip to one of my bucketlist destinations (Yellowstone). We are tentatively planning another trip. I have spent more time with my siblings and parents over the last 4 months since I was diagnosed than I did over the last few years combined. I just got back from a 4 day weekend visiting my brothers in DC while my husband watched our 3 kids. I have NEVER gotten to spend time 1:1 with my siblings without the distraction of caring for my kids since I became a mom almost 9 years ago. It's kind of crazy that it took a terminal illness to remind me what's really important and worth while in life, but I have to say, if there's an upside to MND, it's that it has allowed me to give myself carte blanche to focus on people I love and enjoying life as much as I can.

 

[Scotiaspirit]

Kristina1, I totally agree, do what you can now on your bucket list. Time is a tough measurement to instill in our consciousness sometimes, and with a limited future it is important to do the things you find important; do them now or especially while you are able to still travel. Wishing you all the best!

 

[Nbjules]

Hey ChAlly, my hugest struggle is not working. I have anxiety about not being able to take care of myself if something happens between my bf and i. Ty for the kind words

 

[Nbjules]

Kristina1, I totally agree, do what you can now on your bucket list. Time is a tough measurement to instill in our consciousness sometimes, and with a limited future it is important to do the things you find important; do them now or especially while you are able to still travel. Wishing you all the best!

I was under the impression that something else will kill me before the PLS does.

 

[lgelb]

That could be true, Kristina, but PLS has some even rarer variants that end more swiftly, and some PLS dx convert to ALS. So as with any MND, we say, gather ye rosebuds, as it sounds like you are.

Best,
Laurie

 

[Nikki J]

I think the thread is getting a little confused. Laurie the OP is not Kristina but NBJules. NBjules, Scotia and Kristina ( in fact most on the thread )have ALS not PLS and Scotia did address his comment to her. Your dx was changed from ALS to PLS so you have reason to hope for some longevity , though as Laurie says live each day to the max as none of us know what will come