Living without a life,

A forum to talk about the general challenges of daily life with MS.
robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Living without a life,

Post by robbie » Fri May 31, 2019 10:00 am

They say u have to find things your able to do that you enjoy, but what if there isn't anything. What if for you to have a happy life you need certain physical things.That leaves you in a very lonley place. Every thing goes on ,friends do what they do, family accepts your disabilities, life goes on , then there's you watching from the sidelines. Crazy place to be
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

ElliotB
Family Elder
Posts: 1939
Joined: Mon Feb 03, 2014 4:08 pm

Re: Living without a life,

Post by ElliotB » Sat Jun 01, 2019 6:11 am

"They say u have to find things your able to do that you enjoy, but what if there isn't anything"

I know your situation is complex and very difficult but the simple answer is that you may have just not yet found something you truly enjoy at this point in time and to keep looking until you do find the things you are able to do and enjoy given your current circumstances.

Anonymoose
Family Elder
Posts: 1155
Joined: Tue Oct 09, 2012 6:33 am

Re: Living without a life,

Post by Anonymoose » Sun Jun 02, 2019 8:41 am

Hey Robbie,

I love being alone so I’ll prolly be a bit annoying here but I thought I’d share a few ideas for using up time while stuck in bed/chair.

When I’m sick/exhausted, I crochet. (Guys do knit/crochet too so don’t get all huffy on me.) My son loves the blankets I make him just like I loved the ones my gramma made for me. They’re like hugs that are always there for you. His girlfriends always ask me to make them one too. Sucks when I don’t like the girl. @@ If dexterity is an issue, you can use chunky yarn and a pvc loom to knit those big loop fishnet style afghans that are popular now. (Make fishing lures??)

This one will be more difficult for you but I think possible with some help w set up...how ‘bout growing a bedside windowsill garden? I love growing from seed. A story re: pot laws just popped up on my tv. Maybe a sign? I’ve discovered you can lightly spray indoor plant soil w Lysol to keep mold away if that’s a problem for you. I don’t think I’ll be consuming my indoor herbs now though.

A support animal would help in so many ways...both as a companion and an aide. Is this an option for you?

I tried watercolor painting last year. It was really relaxing and the results were hilarious. Sometimes humor is more important than beauty, I guess. Draw?

Audio books. I can only do these if I’m busy doing something else.

Write the next best selling series...I can think of so many spoofs that could be written via the disability angle. Would that be offensive or funny though??

Become a telekinesis Jedi. The mind is an amazing thing. I tripped on nitrous at the dentist once a million years ago. Wow. Brains can do some crazy stuff. Maybe we can bend spoons with our minds.

Get into macro photography? There are online contests/communities for stuff like that.

Try transcendental meditation. The only way I could try this is if I couldn’t do anything else. I’m curious about it though.

Anywho, I wasn’t born this way. I learned to love being alone. You can too. Its almost like an awakening to so much you’ve not noticed/appreciated while being preoccupied w human interaction.

Be well,
‘Moose

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Mon Jun 03, 2019 7:02 am

The last nail in the coffin for me was loosing the ability to transfer myself into the chair, that was a deal breaker.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Mon Jun 03, 2019 9:49 am

When you think about it from the moment your diagnosed your life becomes about change, emotion, challange, doing all you can, adapting to limitations, personal problems, but back to being able to transfer yourself is such a big ability to have because it lets you hold on to some independence. For me it was a huge turning point, it was a game changer I could deal with all the challenges up until that point, was never good at it but was ok. Now my mind is with my body,
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

ElliotB
Family Elder
Posts: 1939
Joined: Mon Feb 03, 2014 4:08 pm

Re: Living without a life,

Post by ElliotB » Mon Jun 03, 2019 12:44 pm

"I learned to love being alone. You can too. Its almost like an awakening to so much you’ve not noticed/appreciated while being preoccupied w human interaction. "


How true! Shortly after I became ill with my first major attack, my ability to enjoy socializing greatly diminished (basically zero). I have been alone now for 1 1/2 years and couldn't be happier at this point in time! At first, I thought there was something wrong with me. But I quickly found out to my amazement I was not alone in enjoying this lifestyle. I live in a small condo community with many retired residents and noticed that some of the older residents here do live alone as well by their choice, and they are all happy, very happy! I have spoken with some of them and they all say they are much happier this way. (And yes, there are some very happy couples here as well, some that have been married for 40 years, 50 years and more.)

Anonymoose
Family Elder
Posts: 1155
Joined: Tue Oct 09, 2012 6:33 am

Re: Living without a life,

Post by Anonymoose » Mon Jun 03, 2019 1:04 pm

robbie wrote:
Mon Jun 03, 2019 7:02 am
The last nail in the coffin for me was loosing the ability to transfer myself into the chair, that was a deal breaker.
Forgive my ignorance. I’m sure I’ll put my foot in it...

Have you researched transfer assist devices? Maybe you could get that independence back?? If $$$ is an issue, those online fundraisers seem to do quite well.

Also, why not have someone come in to transfer you a couple times a day? Could it be that simple?

‘Moose

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Mon Jun 03, 2019 1:21 pm

No problem Moose , got a hoist now Had PSW for 2 yrs didn't work out.just that last step
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Mon Jun 03, 2019 1:36 pm

Its like being on a staircase only your at the top and the only way is down. To me the steps are ms life some easy some hard. You'll even go back up a couple stairs and maybe stay there for a while . The closer you get to that bottom step though the clearer it is, there's nothing beyond that bottom step.
Stay at the top no matter what.
Corney as heck I know but this is how bad loosing my transfer ability was/is.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

Anonymoose
Family Elder
Posts: 1155
Joined: Tue Oct 09, 2012 6:33 am

Re: Living without a life,

Post by Anonymoose » Mon Jun 03, 2019 6:57 pm

robbie wrote:
Mon Jun 03, 2019 1:21 pm
No problem Moose , got a hoist now Had PSW for 2 yrs didn't work out.just that last step
Would something like a surehands system work or is that like the hoist you already have? https://www.surehands.com/

The stairway analogy isn’t corny at all. Sometimes I feel like a salmon...fighting the current of MS to just be almost normal part of the time...for a human...I don’t want to lay eggs or anything fishy. And then there’s the constant planning and prepping for the inevitable. I wear a flower of life necklace to remind me to research it when I become immobile...a distraction that might help make everything make sense.

What are you curious about? You’ve always got your mind. Now you can be as self-indulgent as you like wasting hour upon hour studying up on anything that tweaks your interest for no good reason.

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Tue Jun 04, 2019 11:01 am

Hi Moose I made a ceiling hoist from stuff a lot cheaper,couldnt afford the real thing. That was partly why the PSW didn't work out, no faith in my engineering skills. Makes it possible for my wife to move me around though. Disability is a rich person's game.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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NHE
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Joined: Sat Nov 20, 2004 3:00 pm
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Re: Living without a life,

Post by NHE » Wed Jun 05, 2019 12:49 am

robbie wrote:
Tue Jun 04, 2019 11:01 am
Hi Moose I made a ceiling hoist from stuff a lot cheaper,couldnt afford the real thing. That was partly why the PSW didn't work out, no faith in my engineering skills. Makes it possible for my wife to move me around though. Disability is a rich person's game.

It looks well made! viewtopic.php?p=248292#p248292

Anonymoose
Family Elder
Posts: 1155
Joined: Tue Oct 09, 2012 6:33 am

Re: Living without a life,

Post by Anonymoose » Wed Jun 05, 2019 5:03 am

robbie wrote:
Tue Jun 04, 2019 11:01 am
Hi Moose I made a ceiling hoist from stuff a lot cheaper,couldnt afford the real thing. That was partly why the PSW didn't work out, no faith in my engineering skills. Makes it possible for my wife to move me around though. Disability is a rich person's game.
Wow! I looked @ the link NHE posted. How cool is that? If you can engineer that, you can engineer whatever modification is necessary to overcome additional challenges (did you lose arms?), right? If I built that #1 it’d look like a ramshackle kid’s fort and #2 I’d have tunked myself on my arse...or head.
Do you mess w Arduino and all that stuff? I miss Radio Shack.

And look at all those windows and all that natural light. Dood. You could have a little farm in there! Motorize the whole bed so you can vroom around from window to window while you tinker w the more complex hoist issue. That sounds like a silly idea but it sure looks like you could do it. I keep seeing stories on the news about high school robotics clubs taking on projects to address disability issues. If you got them involved, you’d be serving the kids more than yourself.

And re: the PSW...would they not get you out of bed or did they injure your pride or did you tell them a thing or two and you feel the relationship now can’t be mended? Can you get a different one? Cost-benefit analysis needed here.

MS definitely is a rich man’s game. I need to win the lottery. I’ll send you some millions if I win the big one.

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Wed Jun 05, 2019 7:03 am

It works really well, does everything it has to. I had 4 different ladies come for an hour they were afraid to use it , much faster then the normal. Then there was the shower thing, I only like my wife to shower me so they were cooking my lunch that's about it. All round decision to stop, better now for me and frees up them for others.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1292
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Living without a life,

Post by robbie » Wed Jun 05, 2019 8:37 am

My arms are pretty good Anonymoose my hands are numb but still have good grip strength, can't write, hold tooth brush like a bat, fingers are clumsy minor stuff. The strength in arms lets me move my butt around, helps to avoid sores.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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