Holidays

[fallinggirl]

I just need to know if anyone out there understands how I'm feeling or can just share some insight...

Thanksgiving Day was good, but right after the meal was through, even before I got up from the table, I started crying. I do suffer from the emotional liability part of ALS, but this was just deep grief. I feel almost as if I am grieving myself. Weird.

I have been having panic attacks at least twice a week.

I just need to know if someone out there has "been there, done that." I feel so very alone. I just think my big problem is wondering is this the last Thanksgiving, last Christmas for me? Or at the very least, I wonder how far I will have progressed in a year's time.

 

[Mediasmart]

We have a responsibility to those around us to keep a stiff upper lip as best we can. It is somewhat different for those with the laugh/cry component but keep in mind that as bad as this is for you/us, those around you also suffer and feel deeply over something they can't either control or hep with. You must always try and make it easier on them.

 

[texastracy]

I totally understand those feelings. The holidays always make me a little blue, but this year is a little rougher. It's hard to keep those feelings tucked inside all the time. Your family can be supportive, just as you can be the shoulder they cry on from time to time. Some days will be better than others. Crying is a natural release of stress and grief. Denying that just stresses your body more. If the crying becomes uncontrolled, then seek help from a trusted doc tor.

My thoughts and prayers are with you.

 

[ottawa girl]

I cried a river for last two weeks! Never was much of a crier before - and now with bulbar involvement, crying actually hurts as sobs accumulate in my chest. I assumed it was lability, but I think not.

It's grief, sadness, fear and anxiety. The more I cry, the harder it is to breathe, and then panic sets in because I feel as though I am suffocating. Vicious cycle. At the hospital, I was taught to slow up my breathing, while I cry, and which eliminates ( almost) the ensuing panic attack. Deep breath in through my nose, and very very slow controlled release through pursed lips. Seems to stop the crying too.

Falling girl... We must release the pent up emotions. Stifling just makes it worse with accumulated mucous which is hard to expel and in my case, also morphs into painful acid reflux. Those around me, have taken to just cry along with me. Even a couple of nurses cried with me.

It's our humanity in the rawest and most beautiful form.

 

[wendyj]

Thank you for sharing. I have been feeling the same thing.I won't buy new clothes or shoes because I don't know how long i have. I try not to dwell but It's so hard. But as Texastacy said we have to keep a stiff upper lip for our family. I watched my mother suffer though ALS and she hid alot from me know I know why.

 

[zoohouse]

I have tears in my eyes just reading how brave you are all being for your family. I know that Tim wonders if this will be his last Christmas, and he won't answer me when I ask him what he would like. His birthday is on Dec. 13th, so it is a double whammy.
So here is how I see it, PALS keeping a stiff upper lip, and CALS keeping a stiff upper lip, and both feeling alone in their grief. Maybe we should allocate 1 day a week, or month to just cry together, with a suction machine and box of Kleenex at hand.
You all have become a family to me now, as I know that you can understand this bizarre trip that we are on. I have a wonderful family, but ignorance is bliss, and we don't have that luxury. I am so proud of each and every one of you, God bless you ALL, PALS & CALS.
Now if you will excuse me I must blow my nose, and give Tim a hug.

Paulette

 

[Barbie]

Falling girl, your tears are well founded and you have every right to cry. Holidays are very tough on Pals and Cals too-I bet almost everyone here on this forum has thought "will this be my/his/her last"? don't apologize for your tears--they show how much you love and feel.

sending a hug

 

[affected]

falling girl, yes we as CALS and PALS feel all the things you describe, your words touched me deeply.

Please cry with your family, you should not keep a stiff upper lip, and attempting to do this will NOT make things easier on your family. I can tell you this as a CALS.

I hope your family hugged you and cried a bit with you and you can then turn these things into some true quality time. If you all just keep busy doing the stuff that needs doing, but not connecting emotionally then you are all just living in the same house.

You family will feel much of the same things. Sometimes you know letting that out can allow you to all agree that whilst you all have these thoughts and feelings they are not going to dominate. Sometimes not letting them out allows them to dominate.

Elaine, that is fantastic they helped you learn to cry more safely, my PALS had to teach himself not to panic, it's the same for him if he laughs.

These holiday seasons definitely bring emotions right up to the surface for all of us

 

[Janie H]

I haven't cried in six months, I used to cry all the time, I think it's the meds and thank God for them, I laugh a lot, I filled the dogs water bowl and put it in the refrigerator yesterday, everyone got a good laugh especially me, I think I'm brain damaged but it is better than depression, I've had enough of that.

 

[affected]

Janie I'm doing more and more odd things like that too!

Like putting on a load of washing to discover I never put the clothes in ... watching the dogs this morning drinking from the fountain in the backyard several times, then finally noticing their empty water bowl sitting beside me lol

The holiday times probably only compound everything and our brains whether PALS or CALS do get affected either just by the stress of what we are going through, let alone any frontal lobe involvement.

It's good to be able to just laugh at ourselves when we do these mindless things. My husband and I laugh at as much of what is going on as possible. Then when we have a bit of a cry over it I think it helps us even more then next time we choose to laugh.

 

[texastracy]

We have a responsibility to those around us to keep a stiff upper lip as best we can. It is somewhat different for those with the laugh/cry component but keep in mind that as bad as this is for you/us, those around you also suffer and feel deeply over something they can't either control or hep with. You must always try and make it easier on them.

Here is the one that said we have to keep a stiff upper lip.

 

[fallinggirl]

Thank you everyone for your comments. God has blessed me with an incredible support system- I was completely freaking out- full blown panic attack Thanksgiving evening.

I called my mother who suggested I get on "that support board you've talked about" and see if anyone else feels this way.

She assured me I wasn't going to be the only one who ever went through these same emotions. I hate that anyone else feels this way but at the same time, I am glad to know I am not alone in this... strength in numbers I suppose.

I personally think if I stifle the emotions, I am not doing them any favors either. I know from their own mouths, they agree with me. Mind you, this isn't completely a daily occurrence, at least not the panic attacks, and some days I don't cry.

However, I have been told over and over by my CALS that they would feel the same way they imagine and to keep sharing. So, I think I'll do that. Thanks.

It's great to have this place to share.

 

[Mar51]

Hi, Fallinggirl, you made me think of "Tuesdays with Morrie". About crying in the mornings. And another one about feeling all the emotion and letting it out. "Turn the faucet on. Wash yourself with emotion. It won't hurt you. It will only help." It was definitely a different point of view for me. It helped me.

 

[fallinggirl]

Mar51, I've never watched that movie or read the book. I think I'll do that sometime, if I can do so without crying too much.

I am a mess today! I want to decorate our home for Christmas, but well... it's just hard. I can't do anything anyway, but my family will do some. I just am realizing how much I am missing.

Wow! We sure take so much for granted in life, don't we?

I am trying to be happy for all I do still have )

 

[Mediasmart]

Here is the one that said we have to keep a stiff upper lip.

Yes i am "the one'. i'm just opining that this entire thing is bad for everyone...but to the point that those of us WITH ALS should try not to sap the energy out of those around us if we can help it. I wasn't meaning to laugh and joke and flash an endless smile but to keep it together when possible.

personally I know that at one point I'll be afraid...and i'm not in denial now but my quality of life is best spent in not dragging down my wife and kids and grandkids into a dark hole. We can have good visits and all that and that's how I want to be remembered and for me to remember.

That's all I meant.