how to stay on an even keel..

[sallyb]

I don't know how to start talking about how crushed I feel. Things at home continue to deteriorate, I feel terrified each time before I go home because I know there's some new horrible reality to adjust to. I really have been trying to "just get on with it" and when I am there I help out & I never cry, I always try & make them happy but more and more I feel like I am filling up with sadness. I feel totally disconnected from most things, it's like I'm sleepwalking through most days. Work is a struggle as I have to be a motivator/problem fixer/filled to the brim with empathy and compassion but I just feel like walking in and saying I am done. I know I sound horrible but I just feel like I can't care about people's problems - it's like I just can't connect with any of them. I don't know if it's the misery from the rest of my life seeping into work or if I just don't enjoy my job anymore so I don't know if taking time off will make me feel any better. I have no grand plan after my majestic imaginary exit from work needless to say.
I am terrified of what is to come and it's that mix of dread and sadness that sits on my chest. I have been chanting "one day at a time, one day at a time, focus on the here and now" but I find it so hard when every day brings a new loss - it's like being slapped in the face with it. I know it is a process (the disease and the grieving process) that we have to go through but I am so afraid I sometimes just wish it was all over and there was no more suffering.
I don't know what I'm asking for here. I have read really heart - breaking, articulate and beautiful posts here lately that have said all of this and more before. Maybe I'm just looking to feel connected to people that understand.
Thank you all.

 

[WellsRuby]

I hate ALS as others have stated. It means watching a love one lose a part of them each day...you hurt for them. It means time is slipping away quicker than you want. Your love for your mother is strong and it will get you through this. Sometimes the only thing they need is to feel loved and our support. It is hard on the caregivers and families. I have found this forum very helpful as well as friends to talk to. I also went to the doc and asked for help because I was finding it harder to get through the days at home and work.. There is no secret to handling this horrible disease but find what works for you. Find a friend to talk to, vent on this forum and we will be there for you.

 

[momap53]

I feel that way too some days, just wish that all the pain and suffering were over.
My empathy for other people and their day to day problems has all but evaporated.

 

[panguinjen]

Sallyb,

I'm so sorry and understand completely. I get tired of one day, one moment at a time; but the alternative is worse for me... I can't look too far in the future. I use my therapist, this forum and some friends to help me cope...each day is a new challenge! I hope you can find some peace...

Jen

 

[vzandt]

I feel like Deb. Cannot deal with the trivial stuff at all.

 

[scotslassie]

Hi sweetheart, yes, I understand all you said. There's nothing easy about this. All I could do was put one foot in front of the other. Nothing else mattered or was even remotely significant. The people on this forum know what you are going through. Some of us are still making the journey and some have reached journey's end. Some now continue on another, unfamiliar route. We will help you all we can.

 

[kiwisally]

Maybe I'm just looking to feel connected to people that understand.

I think we all understand and would agree with that Sallyb. Hope you find that here.

 

[Wings]

Yes, that sums it up for me re looking to feel connected to people that understand. I dont think i want to be around my friends/family when get really bad... i dont want them to see me go through the worst of it - i think knowing the pain i will cause them will in turn be too painful for me -one day at a time, and maybe i will change my thoughts about this - but i love my brothers, nieces dearly and would hate for them to see me at my worst .... I have already and have done so for a good while now -but completely dropped off the radar re my old social circle - and only a couple of close friends and family know what is happening to me... and yet really not even they know just how hard it really is - hmmmmm

 

[sallyb]

thank you all - it's nice to feel like I'm not the only one that has suffered from the occasional empathy bypass! It's a funny one - I spend so much time trampling my emotions down (so I can function in work mainly) that I think it makes me feel switched off or numb a lot of the time. I'm afraid to go 'poking' at the grief too much as it feels like it will just consume me & I won't be able to get through the day. The numbness combined with the lack of interest in people is not really conducive to maintaining relationships or being Miss Congeniality 2012. One of my work colleagues spent loads of time harassing the cardiothoracic surgeon about her father getting an internal defibrillator and I just felt so angry I couldn't talk to her about it - angry at what seemed like her obsessing over what was the only solution when the end result was that he got to live, whereas we keep trundling towards the inevitable. Big Deal! my irrational brain raged. My logical brain knows that is really warped & horrible thinking but in this as in other situations it's like my logical brain just can't join the dots to emotions.
Wings - for what it's worth coming from a family that has imploded with only a handful allowed access to visit (for reasons like you outlined) I understand where you are coming from but I'd like to offer a different view. If I could change one thing (bar the obvious) it would be that because it would make it so much easier. Yes, some people mightn't be able to handle it and will make excuses not to visit but that is their problem. And there may not be a big loss to losing some of those not well known acquaintances from your wider social circle. But it is lonely and it is harder when it's just a couple of people around. Even on a practical level as things get harder having a friend call over & bring lunch or just to sit with you to allow family to go out to do the shopping etc - whatever. And I think being outside of the circle, not knowing what is going on, why someone isn't returning your calls & has just dropped off the face of the planet doesn't make it any less painful or real for friends & family. This has been my experience anyway but I may have undermined my credibility as a human being somewhat in the last few posts so feel free to disregard! (my colleagues call me Little Miss Sunshine..)
thank you all though. I logged on at lunchtime today when I was trying to figure out how to get through the afternoon and it gave me that sad but kinda comforted feeling if that makes any sense?
One foot in front of the other indeed.. X

 

[Barbie]

We've all been there and understand completely...it is a scary path that we are on, but we are all here for you. ALS is relentless and cruel to the whole family. You do have to just keep going, but it doesn't have to be so hard...I suggest you see a therapist or look into anit anxiety or depression meds for your self. you are under a lot of pressure and meds can take the edge off. In my own experience, meds helped me deal with the daily problems and not feel overwhelmed.