Bit of a meltdown....kind of embarrassed

[NinjaLady]

I went to my first ALS Assoc CALS meeting and everyone went around the room describing their PALS current situation and when it started, how it started, details, etc., in quite length....and I was unfortunately last on this circle of sharing (first time, hate sharing anything usually in public in any way, bit of a recluse)....and I thought I was prepared for my sharing and I started to feel that frog in my throat and trembly voice...ugh, couldn't do it, started crying in front of a group of people I had never met before. So embarrassing. They were a lovely bunch and super understanding....but not my usual cup of tea and I was a bit mortified.

I think my meltdown started when I realised that my PALS progressed quickly then all of theirs. I think that really bummed me out. I thought I was going in thinking they were going to be at the same stage of things or approx, and it wasn't the case or even close. I was uncomfortably resentful of the fact that some of their PALS could still drive or golf and they had been years longer Dx than my PALS. I know that isn't cool and its not fair, its all relative and crappy in this terrible disease.

I was the youngest by far and only one (in my 30's) and I still work full time, raising children and taking care of my PALS all alone/no help (my PALS wont let me get help), when their children were grown and old and talking about still travelling...sorry, bit of a rant (sounding jealous, sorry)...I digress.

I left early to pick up the kiddos from school, tried to escape out of the room, and they yelled out that they hoped I would come back next month and one lady gave her number to me as I squeezed quickly out the door...and another grandma hugged my and kissed my cheek a few times (like she really knew I needed it, which I did).

I'm a bit embarrassed, I know its normal...but out of my comfort zone...not sure if I should go back. Also, not sure I benefited anything or it just made me more sad as I cried my whole drive to school/home...just made things/maybe the end closer/more real, not sure how to explain.

Sorry to have written so much, thanks for reading if you got this far. Most appreciated.

 

[GregK]

There are those of us that pass within a year. :-(
There are those of us who amazingly keep on going. (thinking of Dr.H here)

And then there's the rest of us, all over the progression 'map'.

And if any pALS or cALS tells you they've not cried, they're lying. Or a Lizard Person! ;-)

So, do not be embarrassed, we've all been there. Are there. Will be there.

And if you got something from the meeting, please do not hesitate to go back.

 

[NinjaLady]

Thanks Greg! Most appreciated!!

Side note: what is a lizard person? ��

 

[GregK]

Lizard People are running the world, per Alex Jones of InfoWars.

Oh, and Sandy Hook was a hoax (according to Jones)

 

[whereswaldo]

First I would like to say, support groups are not for every one. It took me over a year to go to the first one, plus the nearest one was a hour and half drive. For us, once we started going, we continued to go and ended up becoming friends with a large group. They have started another group in our town, which we now attend, but we continued to attend first group because we became so connected. We have since stopped the first only due to the time of day and the travel.

Again, they are not for everyone , but if you give it another chance you may make some good connections. Also if you talk to the ALSA reps, they may offer another group that you might feel more comfortable attending.

Good Luck

 

[lgelb]

Ninja, you were holding a lot in and so when you let a little escape, a lot did.

As Greg says, go back if it might help, but if the differences are too much, you might try using the number you got from the one lady to infiltrate the group and gradually have a more ad hoc situation where you ping each other when you feel like it, not as much of a formal sharing circle, or to occasionally help each other out.

You're right -- your situation isn't as typical, and rapid progression sucks. And yeah, your ability to deny or look past took a hit. That could be positive overall -- you could become more carpe diem-like, if it's possible -- but still -- it's very hard. We are all realists, but we are also are all deniers, which is about survival.

Best,
Laurie

 

[affected]

It was much the same for me - I was looking forward to this meeting, drove there feeling good, walked in feeling good, sat down people started talking and I freaked out inside! It got to me and I broke down and said I can't say anything!

It's actually a really common reaction I now know, but it sure threw me. My husband was also very rapid progression, so I hear ya!

 

[KW1234]

I am a rapid proggressor and as a PALS, I feel thankful. This disease is frustrating and trying on our caregivers. I hate feeling like a burden.

 

[KarenNWendyn]

Definitely not for everyone. And everyone comes to terms (or not) with this type of situation at their own pace. There are no “shoulds”.

I would say to cut yourself some slack. Hang out here on the forum where you can be “NinjaLady”. Rant away — we’re here for you. Then when you’re ready, IF you’re ready, go back to the support group. You may feel better prepared emotionally the second time around.

Another alternative would be to talk to the ALS social worker in your area if you desire local support. Sometimes they can give you contact info of another CALS or PALS in your area who is comfortable reaching out to folks not wanting to attend support gtoup meetings. Sometimes it only takes one person to talk to to help you feel more connection and support.

 

[diagnosed2016]

I’m sorry that you are dealing with a rapid progression on top of ALS in the first place. I have the same concerns about support groups as you and haven’t attended any. I feel like having Young children and dealing with this disease is totally different animal and it’s harder to relate to others who may have grown kids to help out. The responsibilities are increased, you have to worry about being sole caretaker for a lot of people, etc. Its overwhelming. I don’t post here as much for that same reason, even. Lean on friends and family where you can. Find a counselor to help you vent. Feel free to message me privately.

 

[NinjaLady]

Laurie, you are so right about holding alot in and trying to let just a little escape and alot did...I find myself inside ready to burst quite often and scared a bit that if I let it out I won't be able to control or stop it. I feel like if I share with one or two family members or friends that I'm unloading and burdening them big time and feel guilty and awkward afterwards. They don't get it and want to help but can't and don't know what to do in general.

I was surprised and I think at that moment I realized my PALS wasn't a slow or normal progressor, and I honestly thought he was. I had no idea and they never told us anything about it at the clinic. His FVC dropped over 30% between the last clinic and the one before that...maybe that was an indicator. They didn't say.

Tillie - thanks for relating. I did feel good going in and felt horrible leaving. I probably won't go back but maybe I will connect with that one lady that gave me her number.

KW - What we go through as CALS is nothing compared to our PALS for many reasons. It is still very hard and devastating, but not nearly as horrible as what you PALS go through. The burden part is what it is, I would try to not focus on that part and just try to get some enjoyment or peace out of each day that you have. Easier said than done, I know...living in the moment or focusing on just today is way harder than it sounds, right?

Coming here reminds me to be more loving, patient and positive with my PALS and try to stay strong for him and my family. I appreciate you all so much. Thank you!

 

[NinjaLady]

I ran out of "say Thanks"...but thank you Karen & diagnosed2016.

Good advice Karen, maybe just one person that I can connect with and can relate will do some good.

diagnosed - you are right. I can't be down and miserable in front of the kids, it would be too hard on them...but at the same time they are a motivator to try to keep positive and keep going. You nailed it when you mentioned responsibilities...the pressure of being the only person responsible for so much is suffocating sometimes. I briefly think sometimes what it would be like to just run away fast and somewhere far and hide in a cave and sleep all day. lol. I know, ridiculous.

I already feel a bit of weight off my brain and shoulders just sharing a bit on here. thank you all

 

[KimT]

I was diagnosed in August (2015) and it took a couple of friends to convince me to go to my first support meeting the following March. Both PALS and CALS were there. Some of the PALS were totally paralyzed and in their chairs using eye gaze to communicate. Others, like myself, were still walking and talking. I didn't have a CALS but a close friend went with me. During the introductions I started crying because this was the first time I saw other PALS who were very progressed. I was crying for them and their CALS. By the time it got to me I had recomposed and was able to introduce myself.

After the meeting a group of 5 PALS and 5 CALS/friends went to a restaurant and ate. Some took two hours to eat. Some were fed by their CALS, and others ate very little. At that lunch, which they had been doing for nearly a year, I bonded with several PALS and CALS. Some have since died. Others are still here. One of the CALS came to my house the Christmas after her PALS died and brought me presents and cookies. I'm going to another PALS home next week with a gift for him.

After the last hurricane, I didn't go for 5 months. I went last month and they were eager to catch up. Vitas Hospice invited me to make a presentation to help train their hospice workers and home health care workers (they have both) on ALS. I'm inviting an RN who is a CALS and my RT to help out. We plan on showing them the Trilogy, how to transfer using a Hoyer lift, and answering questions as relates to caregiving of PALS. Hopefully, we will do it by the end of the Summer. They all have the copy of our ALS Awareness document. Also, the nursing home we meet in is going to do a fundraiser for our group to help PALS with costs not covered by insurance. We're getting new people in just about every month.

The hardest part is seeing my new friends die, seeing the grief from CALS who come alone, and knowing some day I will no longer be there. But, for now, I feel like doing what I can to help others there.

Ninja, the decision is yours and everyone is different. It does help me to talk with other PALS so I'm guessing it will help you to talk with other CALS. You could give the lady a call, try another meeting, or just use us here for support.

It is particularly hard for me to see a young PALS or CALS. It tears me up but I always make sure I give them my contact number and this forum's address. I have a handout for online ALS resources that I bring each month and the social worker also distributes it at her other support meetings, along with the ALS Awareness Document Tillie and I put together.

I cry at every meeting, sometimes I hold off until I leave. Other times, I just can't hold it in.

 

[NinjaLady]

That is lovely that you made those special connections Kim. Thanks so much for sharing this. Motivates me to try again.

 

[KimT]

Ninja,

Please just make sure you pace yourself. You have a load on your plate and need to, somehow, make some time for yourself. I hope you have family/friends who can give you some special time out for a pedi or massage.