I Need to Lose It

[Lkaibel]

Okay, I have had a full month past my husband's Dx of positive attitude. Yes, I know many PALS and CALS have had years of it. Thing is, who wants to be either one? We know the answer to that.

I was looking at pictures of myself as a kid, and I felt sorry for that little girl who grew up to have a husband with ALS and no treatment in site. Yup, blatant self pity - kinda. I don't feel so sorry for the adult I am today. People have worse to deal with, I just can't think of that now.

I need to rant, rave, stomp, cry scream. I need a night away from my PALS, away from work where I can do all that in peace. Yup, I want a whole night of freedom to just lose it in. Just parking the car somewhere is not working so well, and I am sort of in public so how can I really lose it?

Oh and don't get me started on some people I know. "Make me feel useful, I just can't read about this when there is nothing I can do" one said on my blog spot. No one asked you to read my blog spot, and why do I need to make you "feel useful". Not my job.

Then there was work. I am not gonna go there because my name and photo is on this, but at least one person infuriated me there.

I am okay - sort of about 85% of the time, but this crazy scream is welling up in me. I am tired of being brave and positive and having the perfect attitude. I need to lose it, and soon.

 

[scaredwifetx]

Lenore- Do not feel one bit guilty for what you are calling a rant. It is much deserved and understood. I get it. I so have the internal scream and no amount of medication can ease it. It doesn't happen often but it does happen.

Is there anyway you can take off just for a few hours, the day or night and just go be alone with your scream. Just go! a few hours cannot hurt anyone can it? Find a quiet peaceful spot, take time to sit, and scream. If that is not what you want to do. Do whatever you want to do. Trust me it will make you feel better.

You are not going to hear from me "what can I do to help you" I can't. I understand completely and don't have any answers. let's just be honest. Sometimes you just have to unhook from all of us and everyone. You have a right to lose it. Wish I was there we could lose it together tonight.

 

[affected]

hugs Lenore, every CALS knows and can identify with every word

The antidepressants did take the internal scream away for me - as a constant thing. Before them that scream was there 24/7. After they settled in, the scream only arose at times and I could kind of deal with it somehow.

I think you do need to find a way to go scream somewhere. The pressure builds, and we must let it out because we don't want to scream at our PALS, we just want to scream! Can you somehow take a drive out to somewhere a bit isolated to scream?

I used to do this weird thing. When I would walk up the hallway I would silently pull faces, shake my hands around, like a bit of a lunatic. It was amazing how much pressure it relieved. It became quite a game with myself to see how close to the end of the hallway I could get and still be pulling some face before returning to a very calm, almost happy face to exit the hallway. It was amazing how much stress was relieved by doing that, it was like many muscles could relax again, until the next time I had to walk up the hallway ...

 

[Lkaibel]

Thank you both. I feel better today - I think part of it yesterday was working so hard this week which is harder to do now with ALS in our lives. I think carrying that around is why I sometimes just get super tired even when I have slept reasonably well. I have a feeling that if my beta blocker did not suppress some anxiety things would be a lot worse.

All that being said, I know that scream-date is coming and when it's needed I will go and do it, guilt free.

 

[faithandlove]

Don't you just wish there was a face to this disease, and we could just punch it over and over again. It causes so much turmoil and sadness in people's lives.

In fact, I'm going to see about getting a punching bag and call it ALS for "A loathing shithead"

Maybe we should all get one.

Hugs,
Deb

 

[affected]

oh faith you nailed it!

and for the PALS who can't use limbs we need a virtual ALS punching bag so even with eyegaze they can punch the beast in the face over and over ...

Lenore, glad you have released a bit of the tension build up.

I always said I could do Chris's care with one hand tied behind my back - it's the emotional toll it takes on both that is the draining thing xxx

 

[Nuts]

Leonore, I think we all understand. I hope you get that scream date soon. They are important!

I hit a very low point recently and ended up having my Lexapro doubled. Oh what sweet relief! I may be walking around with a bit of a buzz, but that's better than the waterworks.

You are right about the emotional toll. I can have a good night's sleep and still feel like napping all day long. Driving is becoming very unpleasant because of the struggle to stay awake. I think I slept through my exit off the interstate coming home today and added 45 minutes to my drive. I didn't even get mad. See? Good drugs.

Becky

 

[affected]

Please be so careful driving!

Some of you may remember that I had a microsleep in my car and wrote it off. Fortunately I did not have Chris in the car with me.

But I still struggle at times to be honest with driving long distances as I get tired driving for too long.

 

[Lkaibel]

Yes Becky please do be careful driving.

I am glad I am not traveling much now for work. Those two hour long drives would be hard now, and I hate to be away a night even though I could still be.

I think I stress myself out a lot more when I think about what we have already lost. With his (former) health and at my age (51 to his 66) we lost at least 10 years and likely more and that grabs me. However, one of us could have been hit by lightening long before then (well, one of us sort of was).

There really is a place where not only do we just have today, but today is all we ever had. The diagnosis just made it "official".

 

[scaredwifetx]

I am right there with you Becky. I have to drive for my job and sometimes the distance is five to six hours. I used to love driving and could stay awake as long as I was behind a wheel. The past few months I have had to pull of the road several times. I always give my self extra time if traveling more than a couple of hours away so I can stop if needed. Tomorrow is a travel day and have to drive at least five hours each day until Friday. I am excited to meet Soonerwife who is from my hometown so maybe that will keep me awake. lol

 

[starente15]

I have literally screamed so loud I got hoarse. Sometimes you just need a physical release. This past Saturday when I went to bed I just started crying uncontrollably and it went on for quite awhile. I keep riding the waves. Before the cry I was having high anxiety for weeks. After I felt peaceful but it was more like depression.

 

[scaredwifetx]

So sorry Star. You are always in my thoughts.

 

[avnl]

For me, the shower works well. Really hot water and a scream. I want one of Deb's punching dolls. And Lenore when you find your place to scream do it for all of us! The attached picture is how I feel these days.
Anna

 

[Lkaibel]

Anna, Scared and Star yes I am here daily because no one else really knows. Brian said something this morning about wanting to record something or another now in case he lost his ability to speak clearly all of a sudden like someone he read about. I can hardly believe these conversations some days.

Take care of yourselves everyone. We will all be here when this is over ( as Brian says sometimes). Changed forever but here. That is some days both a wretched and a comforting thought to me.

 

[vltsra]

Lenore, I agree with what everyone says here. I'm just a little farther down the path than you (diagnosed late October 2015) but feel like the rest of my life will be defined by ALS. I've felt all of the things you describe - anger, depression, sorrow - and I'm sure that everyone here has felt the same. I am a little more level these days - the first six months I was in a complete fog and could barely function. I am taking a very low dose of Zoloft, have decided to cut back my workload, and am doing a few things for myself now while I can - a little traveling with my PALS, taking painting classes. I'm thankful we are all here for each other.

V