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WendyWooG

Senior member
Joined
Jan 10, 2016
Messages
519
Reason
PALS
Diagnosis
07/2016
Country
Uk
State
Hertfordshire
City
Stevenage
I just need to vent, I am cross and irritable and just Grrrrrr.....

It's been a difficult few days, and the hospital bed is coming tomorrow which means moving downstairs, and I just really don't want to. I know I need to and we will make the dining room and conservatory into a nice bed sitting room for me but I don't want to.

I feel like a toddler having a tantrum when losing a favourite toy. I want to keep my bedroom, my nest where I have a big bed. Somewhere my daughters and granddaughters can all pile in. We watch movies and chat and laugh. You can't do that in a hospital bed!!! They can't cuddle me if they can't fit next to me :sad:

I am now slightly ashamed of myself because I snapped a bit in a reply to someone on the DIHALs section. Normally I only reply to posts in that section if I feel I can be helpful and constructive, but I got annoyed and a bit shirty with them which is not good.

Rant over, sorry

Wendy Woo
 
Sorry Wendy. It may seem to some a small thing but it is a big loss. I hope you can recreate the spirit of the closeness somehow in the new space. I suspect you can. It sounds as if you have a lovely family.

And nothing to be ashamed of btw
 
Nope. You did not come across as inappropriate in the DIHALS section. While there may have been a slight language/interpretation issue on the DIHALS's part, the underlying message of the original poster was that of "You guys owe me reassurance." with little effort on her part in seeking actual real medical advice from an actual real medical professional.

I just wanted to make sure you knew you are supported, even remotely, from my neck of the woods. Also, losing your comfortable nest because of necessity and not choice is a GIANT BUMMER. I am so sorry for it.

Fiona
 
Hi Wendy,

The DIHAL posts are difficult for us who actually have ALS. I have done the same thing, and felt they deserved it when they did not have the necessary tests, or when CALS and PALS informed them their symptoms did not fit the symptoms of ALS. They can be relentless with their fears and it is obvious that many of them, not all, have mental stress issues - not ALS.

I, too, had to leave my Cal King bed from my beautiful bedroom, and had my hospital bed set up in our formal living room and dining room. I got a 2" foam mattress topper and a quilt which keeps me toasty warm. I ended up loving the bed, and, I hate to say this, but I look forward to going to bed. The ALS Clinic was kind enough to get my husband a hospital bed, and he loves it too.

So, make sure you are comfortable with any extras that are needed, and I wish you all the best.

Hugs,
Deb
 
Wendy, I am so sorry that you are having to give up your room. I hope that your family can help you to make your new room inviting and peaceful for you. Steve is now in a hospital bed and I put a twin bed, a recliner chair and a tv in the room. Maybe they can find a twin bed on wheels that can be moved when family is there. They can roll it right next to you and all climb in. Hugs!
 
Wendy Woo, thanks for answering that DIHALS. I try to intercept the worst ones, but I've had some distractions lately. You were really patient with them, as always. Don't feel poorly about it.

You have a lot of patience and empathy. More than I ever will.
 
Thank you so much everyone :)
 
Moving into the lounge room was a big thing for us too, let alone the single hospital bed. The good thing about it was the Chris was always right in the centre of everything and all we needed was easily organise and at hand.

This doesn't make up for the kids all piling in I know, it was not easy to squeeze in and try to have some skin contact with Chris.

Rant all you want, your feelings are so valid.

Don't sweat over the DIHALS, honest that person will survive it xxxxxxx
 
Wendy, all are right that losing your nest is a big deal. So sorry that you have to. Bling out your new sitting room and I'm sure there's a way for people to crowd in.

Best,
Laurie
 
Wendy, our bedrooms are our most personal space, so losing yours is a huge deal, as is losing the place where you can cuddle your loved ones. Use your creativity sweetie and turn your new space into something extra special!

Becky
 
Thank you everyone, the bed has been delayed now till next week so I have a few more days. My daughter is helping me hunt for nice bits to put in there, and my friends are going to come round to help decorate and make it pretty.
I will get there, being able to vent helped.

Wendy x
 
Wendy,

Before we knew that Darcey had ALS, we were chasing the diagnosis of a disease that was recoverable. Difficulty with walking, therefore, was only to be a temporary thing. So we had a chair/stair lift put in so that Darcey could continue to sleep upstairs in our bedroom. Now almost 4 years into this, we're still using the stair lift. I will admit that it is a lot of work on my part to get her up and down the stairs, twice each day. And we talk about the fact that the day may come when we'll need to move it all downstairs. But until then, we'll make the trek each morning and again each night.

During the day, while downstairs, we've tried various ways to change things up. Sometimes, I'll put her into a large lazy boy... putting the feet up and leaning the back back. Elsie, our dog, loves it when she's in this chair and asked to sit in her lap. And that, for Darcey, is a dream come true. I've also put her onto one end of the sofa/couch... leaning somewhat to the end side. Once I get her settled (normally with something holding her legs up and level... then I can sit alongside her and enjoy a movie or just talk. As many have mentioned, the key is to compensate for what you've had to let go of and substitute it for things that make it YOUR space. In other words, OWN IT! And don't tell anybody... but one of my favorite chair positions for Darcey is laying flat... so I can half lay across her and get a full body hug (without weighing her down so much as she can't breath). Hug therapy works wonders on both sides of the equation.

I wish you well with any transition that you need to make. And I also look forward to hearing what you've done to make the space YOUR space (and perhaps provide us with some new ideas, too).

Jim
 
Aww Jim that sounds so nice :) you are such a caring person, hug therapy is definitely lovely. My husband is not a hugger, but the girls and I are, so I get lots of cuddles. Its nice for Darcey to have Elsie cuddle up with her. My daughters cat does the same for me and will join me whichever room I'm in. If she doesn't initially I am planning to bribe her with cat treats ;)

We have a stairlift which has enabled me to stay upstairs so far, but we don't have enough room at the top of the stairs to use a hoist to get me on and off and there were lots of problems with getting the upstairs bathroom modified for me. So we knew that when I started to struggle to sit without support and with the few steps to the bathroom we would have to be practical about it.

I am going to enjoy decorating the dining room which opens out into our conservatory, we are just going to hang curtains to provide some privacy. I am also looking at getting a half height screen so that if I want the curtains open I can put the screen up and not be on view to half our neighbours. That way at night I will be able to look up at the stars. A nice thought :)

Wendy xx
 
I am sure I am far more inappropriate with the DIHALS than you could ever be Wendy. In fact if you see me being super nice it often means they have cause to worry!

I am sorry for your loss of your special space, but it's the love that matters most and it sounds like you have that in
abundance.
 
"Hug therapy works wonders on both sides of the equation."

You are soooo right, Jim. I took every opportunity to touch Krissy as much as possible. There were times I'm sure I looked pretty ridiculous, being half on her bed with her, and balancing the rest of me in the air.
 
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