Lots a sad faces at this party - where's the chips?

[sleepy]

Thanks to both of you. I can already tell that this is a special group of people.

 

[Ells]

Just want to say a big “Hi” to you V.

I identify with you as my kids were also 5&3 when I was diagnosed with ALS, one week after my 38th birthday.
Yeah, it’s crap, not in life’s plan, but it’s not the end of the world (even though we ALL have dark days). Life goes on and there’s heaps of fun to be had with your kids.

Thinking of you,
Ells x.

 

[CiCi]

Welcome V, It is refreshing to have someone here with your apparent sense of humor. Looking forward to your posts. CiCi

 

[sleepy]

Hi Ells and CiCi

Ells I would welcome any wisdom you can impart, things you are glad you did and perhaps lessons learned. Of course everyone progresses differently but hearing from someone who faced a similar starting point I would be crazy not to ask.

CiCi I'm always trying to find the funny, it helps. Well, it helps me. For others, sometimes it's too soon to joke. Or too inappropriate. Luckily my husband has a similar sense of humour I do not intend to offend..

 

[Gembead]

Hi V, keep the humor going, 16 months since diagnosis here and we have used "it" to get us thru as we try to see the funny side of things, people around us are now more relaxed as they see us laugh about things, that have gotten use to our blunt approach to what's happening to us.
Love and hugs Gem

 

[sleepy]

Great to hear Gem!

 

[Green Queen]

Hi V
Another Aussie here, WA.
I have been diagnosed with...well, not ALS.
They say Mills sometimes and other times PLS. One and the same really.
There is so much support here...
My brother lives in Mudgee but works in Sydney. From Sydney I guess. He's a helicopter pilot with the forestry mob.

 

[affected]

Whew we are getting a slew of aussies here now

We could even start to talk properly and we will understand - I've been ribbed about my strayan at times when I thought I was making perfect sense

A sense of humour will stand you in good stead. We know what this disease is, but every moment of life is an opportunity and we should embrace each one!

I'm doing a weird GoT thing just now. Finally listening to the audio books, having only watched the series before. But also trying to watch the series. My problem is that I rarely sit still to watch the episodes, but I listen to books when I'm gardening to I'm seriously out of sync! Still it makes it kind of funny too. (the TV series and books are out of sync severely anyway lol)

Love your Syrio and Aria quote - NOT TODAY!
Better than 'burn them all' ...

Although I always loved 'You know nothing Jon Snow'

You've found the best family here xxx

 

[Ells]

V, never, ever lose your sense of humour. It makes a HUGE difference to how I cope with my disabilities and has knock-on effects on everyone. I’ve a dark sense of humour and find it puts most people at ease. You’ll find out who your true friends are and much better to have positive people in your life than moany, negative types, I’ve chucked 2 such people.

The kids and hubby are key; try hard not to take out your frustrations on them (often easier said than done, admittedly) and keep talking to your hubby. It’s too easy to grow apart.

Involve the kids in your care; keeping things hidden can scare them. Show them any gadgets you get and let them try them out.
V, you have youth on your side. Stay healthy and get a PEG when it’s suggested. Try staying positive and being a stubborn cow (like I am) helps too.

I don’t know what to suggest about work. I was very lucky to have had Critical Illness Insurance which gave me a lump sum payment, meaning I could stop working.

I really hope you do well V. The early days are the worst, but it does get easier. I am happy. I love life, it isn’t life as we’d envisaged, that’s for sure, but not a day goes by without having a laugh.

Ells x.

 

[Nuts]

V, that sense of humor is critical. It slips every now and then, but t hat's to be expected. I think we still shock people with our bluntness, but it's a lot better than crying!

I agree with Ells about involving the kids. They can be amazingly resilient when they are included and allowed to help.

Becky

 

[Chancery]

I also was a caregiver for my late wife and I was very burned out after two years of care giving. Don't let it happen to you. Take care of yourself mentally and physically. Above all, do not worry. If you ignore your stress, you will be no good for your patient. I was pleased to find so many of my wife's friends volunteered to help sit with her while I did errands. Just a brief time of an hour or two can do wonders for your moral. It is impossible to be human without hurting inside for what you see happening. God bless you and give you strength when you have none left.

 

[sleepy]

That is so awesome, thanks all, and thanks especially to Ells. Lucky for me, stubborn cow is in my genes lol.

@Tilly: I know what you mean about having a few people understanding the lingo. I had a challenge trying to explain 'taking the piss' to another online community. Kind of 'taking advantage'? But different to taking the piss out of someone. Which is not to be taken literally...

 

[sleepy]

@ Ells and Nuts - my 5yo is already so happy when she can help me open things!

 

[sleepy]

It doesn't feel real. It feels like a dream state. How could this be happening. How is this my life. It's the slow, but unstoppable zombies that are eventually going to get me. I feel like I've lost or gained a lot of weight and look in the mirror and don't recognize myself. A disconnect. I don't recognize my life in all of the information I keep reading. And I'm calm. Surely if it was real, I wouldn't be so calm.

How and when did this feel... real?

 

[fionae]

Oh, Dear V, Dear Sleepy,

I only just now saw your message.

I can only believe that you have entered a new phase in
processing your diagnosis.

We all go/have gone through so many different types of phases as
we daily once again wake up and are confronted anew with this new reality of diagnosis.

I have had periods of time where I felt so very similar to what you have so poignantly
expressed.
I am so sorry, for this is so hard to go through.

With the passage of time I feel that you will find yourself going through other
phases as well.

You will not feel the way you are feeling right now forever.

I know it is hard to believe right now, but there will be better times ahead.
Try to hold on to that.

Again, what you are going through in your mind right now is not going to
last forever.

You will be in my thoughts and in my prayers.

Sincerely,
Laura.