The early hours

[WendyWooG]

Why is it that the early hours of the morning are so difficult to deal with. I am totally unable to sleep yet again and hitting a real low point.

I have tried very hard through happy pills and counselling to find a balance and up until tonight I was doing ok. I have enjoyed my family made some lovely memories and been accepting and enjoying my time.

Tonight I failed I hit a huge mental obstacle which knocked me flat and at the moment I just don't want to even try. It's not like me to be defeatist but I just want to curl up into a ball and have everything go away and I can't even flippin well do that!

i am starting to lose function in my right arm and hand the only working limb left to me. The rest have been pretty useless for a while. Tonight for the first time I struggled to be able to lift a special ultra lightweight cup my drink ended up all over me the bed and the floor and I had to wake my poor husband to clean the mess up. The last bit of my independence is slipping away and I feel bereft.

I should be used to the losses by now it's been happening for two years gradually, but I'm not. I'm sad and I'm angry and so very very tired....

I apologise for being a whinger I just needed to let it out and it upsets my husband too much to talk about it. I don't want to hurt him.

Wendy

 

[Vincent]

Whinge away. You are in one of the few places where people really get it. Grief is a strange thing. Someone described it like having a huge picture right in front of your face. You can't see anything but your loss. Over time it moves far enough away that you can start to see some other things around it. Then some things happens, you hear a song, go to a place, who knows what, and the picture moves right back and you see nothing else. Hopefully at some point the picture moves far enough away that it becomes part of the scenery. Maybe you can put it on the bookshelf, It's there to see, when you want, but not the focus of your life. And then there's a movie, a smell......And there it is right in your face again. Grief is a strange thing. Look at it, study it, knowing that when you are done, it has a place on the bookshelf.
Vincent

 

[ShiftKicker]

Wendy, I am sorry. You have every right to express your sadness and loss however you want. I don't see it as whingeing- you are sharing your grief with people who know what you are going through.

Vincent, that is very compelling imagery. Thank you.

 

[Nikki J]

I am so sorry Wendy. That is a tough loss even among the many losses you have already experienced.

Please share here any time you need to. Sending you many hugs

 

[affected]

Wendy as a CALS I want to say to you that what you are dealing with is so huge. I still know that I never understood it from the inside. I cannot imagine the true depth of dealing with this happening - without even a scrap of permission from you!

You are not whining, you scream it out here and we won't say it will be ok, or say it's not that bad or any other platitudes. We will say you have every right to all you feel and we HATE ALS with everything we have.

Hugs my friend, I'm so sorry this is happening.

 

[WendyWooG]

Thank you all so much I really appreciate the support from you all
Wendy xx

 

[KimT]

Wendy,
I'm so sorry. I hate this disease and what it does to so many good people. I don't think you are whining...even a little bit. Emotions are real and you should feel comfortable sharing them here.

 

[chally]

Wendy, I totally get where your coming from cause that happens to me all the time.
Just when I think I have accepted my situation BAM another things comes along and wacks me upside the head. Usually it's a small thing that tips the scale into a melt down. I use the image of a shovel of dirt placed in a small moving stream and the water flow just takes the dirt away one grain at a time till there 's nothing left.
Have you checked out "Tuesday's with Morrie". By Morrie Schwartz. I get a lot out of this fellows wisdom on letting go !
You are never a winer here, keep posting.
Love ya. Chally

 

[WendyWooG]

Thank you for being there for me, when you get that low having people say we get you, we are there for you and it's ok for it not to be ok. Well it just means so much.

Today has brought bright sunshine from the sun room part of my bedroom and lots of snuggles from tinkerbelle the cat. She has not left my side all day. I truly think animals sense when you need them to give a cuddle. I have had Racee the koala in my tree looking so cuddly and adorable, thank you Tillie xx. I have found a bit more balance. My daughter gave me a hug and said I am allowed an occasional wallow in self pity as long as I don't do it too often lol...

Tomorrow I have a lady coming to the house to give me a spa pedicure, I think I will go for glittery toes who can be sad with glittery toes huh?

My girls have been on the phone together today and this weekend my elder daughter is going to visit with my granddaughter Emma, more cuddles for me
I am very lucky to have family who notice even if I try to hide it and do just the right thing.

Wendy x

 

[affected]

So glad things are improving, but now you know that you can holler it out here.

I say go for purple glitter on the toes - purple to me is always such a happy colour, so doubled with glitter it will just have to make you smile and even laugh no matter what sh!t this monster throws.

 

[faithandlove]

Windy,
I, too, fully understand how you feel. We have one loss after another, and have to constantly find creative ways to deal with these losses without injuring ourselves.

The other day I sat on my hospital bed, and my legs were not strong enough for me to get onto my pwc. I kept looking at it thinking that it was right there, and I should be able to do something so simple. But doing simple things is different when you have ALS. Eventually I got on it, but I almost missed. Hoyer Lift or Gait belt will have to be used soon.

Sending you a big hug,
Deb

 

[Angiegal]

Wendy?
Did you go with the purple glitter? Hoping your weather is warm enough to show them off! (I shall live vicariously through you, the mere thought of anyone touching my toes sends me into the full-on "heebie-jeebies")
Hope you're doing ok...
Angie

 

[KimT]

We want to see those toes!!!!!!!

 

[affected]

Definitely get your glitter toes on here girl, we all need the lift in spirits with ya :lol:

 

[WendyWooG]

Hi all

The spa pedicure was lovely and the foot massage part almost sent me to sleep. I went for a deep purple/ indigo colour with turquoise glitter the toes look yummy Tillie you are right a very happy colour.

I will try to get Charli to take a picture of them to post for you. I hope a photo does them justice. I am normally a restrained neutrals girly but am getting quite hooked on the glitter toes.

Deb the shift into using the hoist and sling is a big one, but falling while trying to do it yourself is such a worry. It has taken a while for us to get used to using it but Chris is very practised now and our OT is quite impressed. The one thing I would say is get it in place earlier than you think you need it, have a play to be comfortable. We got the set up in early December because my OT was worried about my stability. We played with it then left it in a corner. I didn't need it til New Years when I managed the transfer onto the toilet but couldn't get back up again no matter what we tried. Having everything to hand ready made it so much less panicky for me.

Hugs to you all xx