Multiple Sclerosis (MS) Support Group

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Kayce1970 08/28/2012

Need help!!!!
It is amazing how fast we fall back into bad habits.

how do you push through the tiredness?

how do you motivate yourself?

I have been living in a long term hospital.
It has been just over a yr since I left home.
Before coming to the hospital I lived on the couch. I was paralyzed from the chest down. I had a wheelchair but I stayed on the couch. It was more comfortable then the hospital bed they got for me. I did nothing I was soooo tired

Last weekend I went home for a weekend pass. It was great but I was very tired.
I stayed on the couch all day sat & did nothing but watch TV. Just like I used to do.
Bruce did not sleep well he was worried about me.
I am going home this coming weekend but just not as long.
I am going home friday noon to 8 pm
Then going home Saturday morning to Sunday evening.
I am just going to spend one night at home so Bruce will have only one bad night.
I am hoping he will get used to me being there.
I hired a great Personal support worker.
She is a big help.

any ideas on what I can do about the weekends to help Bruce not to worry so much?
and help to motivate myself to get my butt in gear??
Thanks

deleted_user 08/28/2012

Good for you for having the guts to go home and even try in your condition.. It's excellent you have someone coming to help you though.. Does that not give him some peace of mind?
Also, what are you able to do that you feel you should be doing while at home? If you can't move, then you can't beat yourself up over being on the couch.
What are some things you would like to do or accomplish while there?

STEVP 08/28/2012

Get a bell. Tell Bruce you do not need anything and he does not need to worry about you until you ring the bell.

Do your part by not over doing it and causing problems. Sometimes we are less work when we have others do the work.

Eventually he may start sleeping better just knowing you are home. ;)

lchoppel 08/28/2012

I like Steve's bell idea. Quite clever.

I think Bruce probably worries about your frame of mind the most. I'm sure him seeing you on the couch again doesn't help, but nothing can be done about that. Fatigue is such a real part of MS and nothing can be done about that, except try taking some medications to fight the fatigue. So, what I would advise you is to be as upbeat as possible with dealings with him. Don't let him see if you are down. Enjoy your doggie and let him see how much you miss the little guy and how happy you are to see him and Bruce. I think frame of mind is so important. If you are down, Bruce will be down. So try to keep it real light, and have a wonderful time being home.

deleted_user 08/28/2012

kayce, you've both been traveling a long, hard, sometimes bumpy, road. but you made it home to be with your love and your puppy. i think it is probably an adjustment for you all! so do not beat yourself up about needing to do what you need to do..."couch" it if you need to, rest when you must and no guilt allowed, or thinking backwards to what was, enjoy hubby and home! i m happy for you all, it will get better i'm sure. many hugs, connie

Kayce1970 08/28/2012

Thanks guys.
I am still moving at present.
but I think we are both stuck in the past.
tonight was great.
I use a transfer board.
I transferred to the couch then to my manual chair (it is the only chair that fits in our bedroom) then to the bed.
Bruce & I cuddled for an hr it was great it was the first time we did that in a yr or more.
it was great to be held.
I am going home this weekend & Bruce & I are going to sleep in the same room that way he can reassure himself that I am ok.
I am sleeping at night so may be if he can hear me breathing beside him he will be calmer.

deleted_user 08/28/2012

Kayce. I think it is wonderful you are giving it your best. I agree, lt Bruce snugle and hear you breathing an perhaps he will rest better.

Don't want no other bedroom stories....lol....well if you insist, I will read, and give you YOU GO GIRL....but forget all that, just enjoy the snuggles and kisses.

almairis 08/28/2012

Hi

After being in the hospital for so long, being home is so comfy I think I would do the same, taking a couple of days off is ok, but no more. Maybe you can go thru drawers, closets, a little something to feel you are doing something.

Enjoy marriage, alma

deleted_user 08/29/2012

When you are having your good spell, can Bruce sit on the couch with you as a couple a watch a movie you like together, eat meals and snacks tha you enjoy and then when you must lie down he will focus more on the good time you just had together than the fact you have to do back to bed.Of course he will worry, he is your husband he loves you, but reassure him the naps help when you are just plain exhausted. Then when you are up, you can have more relaxed time together.Are there any projecst on the house he could work on(quiety) when you have to take to your bed.That way he will will feel useful, have less worry and you can sleep guilt free.I will be thinking of you over the weekend--Ellen

deleted_user 08/29/2012

can you take day trips? this way you have staff available at night and Bruce isnt up all night worried if you are still breathing. Take some nice lunches out, or day trips to the park and see the waterfalls or visit some places you wanted to go such as the butterfly park or the art hall, or even the movies. This way you get out, you get social interaction and fulfillment and Bruce gets to see you, pet on you, and be with you without the fear that goes with having you slump on the couch all day.

You are very brave, and I am proud of you. I know you miss home, and I am sure they wouldnt release you unless they were sure you were safe, but perhaps getting Bruce used to you in the daylight a few times would help ease his mind as you extend your days a bit at a time and eventually land on overnights.

Im so proud of you!

Kayce1970 08/31/2012

Thanks for all of the great comments it helps.
I have been going home for the last yr.
When I first started to go home for visits Bruce was stressed out in case I got sick while I was at home but he got over that.
we do things together all of the time.
I go home 1-5 times a week.
To help Bruce out I take out the dog.
Shadow loves the long fast walks we take & it helps Bruce out.

it is kind of dark at home in the living room so we are going to get some good lighting so I can see to read or do x stitch

At the hospital I keep busy I just have to do that at home.

I talked to my PSW (personal support worker) and we are going to do things together to get me active.

Thanks again
the support helps lots

deleted_user 09/06/2012

Dear did you go home for the Labor day Holiday-thought of you and hope it was a good visit??? Ellen

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