MS and Quality of Life

[tigergrl74]

I am secondary progressive and most of the time I feel like this disease has taken from me any quality of life that I once enjoyed. Within 22 months I went from having no symptoms at all (MS completely blindsided me), to only being able to sit on the couch all day. I have almost no interaction with the outside world. And I would love to have interaction with it. But when you can't walk on your own, you can no longer drive, and you can't even hold a phone, how do you connect? I think that the isolation this disease causes is one of it's cruelest aspects.

[hunterd]

let me try this again, and I hope I don't completely deleted it.
While I cannot argue the fact that MS changes lives, I will argue that life does not become a desperate and hopeless situation. It is what you make of it. There are things that I can no longer do that I used to enjoy, but there are other things that I used to enjoy that I still continue to do. I have had to make many changes to how I went about accomplishing things. My cousin once told me that I should be proud of what I still try to do. We have overcome many obstacles by simply adapting the way we go about doing them ( he has been by my side throughout my whole MS ordeal).

[Thinkimjob]

Hello, tigergrl74,
That's been a rapid decline, and I'd find that hard to cope with myself. It's taken me 14 years to get bad, and I still find hard to believe.
I can still work, and drive, and walk (sort of). I'd find losing the first two very hard.

With me, I've been too proud (or stupid) to get the assistance devices that are out there and that I know would make life easier. Scooters, wheelie walkers, shower chairs etc.
Not to mention 'assistance people', like someone to do the laundry and cleaners and gardeners. Grocery deliveries.

Maybe it's me believing it will get better if I just carry on regardless, which it won't. And at the minute I can still carry on (sort of).

Having MS or any serious disability usually does result in social isolation. Every day I thank the risen Lord for the internet. There's always someone here.

I've been lucky enough to have time to almost come to terms with the idea that I'm going to need help, and lots of it. I'm also lucky because I've got enough money, at the moment, to pay for this stuff.

There are maybe things you could try - simple stuff, like a speaker phone, so you don't have to hold the receiver.
Are you fit enough (and close enough to a main street) for a wheelie walker and a scooter? What about a motorised wheelchair?
Have you got anyone to help?
Physiotherapy?

I'm not going to tell you "chin up, it could be worse", because of course it could, but it can be hard to see how sometimes.

[rdmc]

I am secondary progressive and most of the time I feel like this disease has taken from me any quality of life that I once enjoyed. Within 22 months I went from having no symptoms at all (MS completely blindsided me), to only being able to sit on the couch all day. I have almost no interaction with the outside world. And I would love to have interaction with it. But when you can't walk on your own, you can no longer drive, and you can't even hold a phone, how do you connect? I think that the isolation this disease causes is one of it's cruelest aspects.

I'm really sorry to hear that you've been hit so hard with your MS.

Some are more isolated than others, just because of the way our lives work out.

Think's idea of getting a phone with a speaker function is a good one. I use the speaker function on my phone quite often.

As far as connecting, do you have any support, as in family and friends? I had to give up driving too, and now I have a plethora of chauffeurs who take me to my appts.

The hard lesson to swallow is people probably aren't going to ask you if you need help, you have to ask for it. Which is something that runs contrary to our desire to be "okay."

And for me, who has a lot of trouble with sensory overload in crowded places, like restaurants, or large stores, there aren't many places I want to go to...I always joke that my social calendar consists of doctor appts.

But here's what I do, I invite folks over, and then if I'm up to it, I cook with help from my husband, or we just order take out (I learned that people don't really care what they eat when you invite them over, so I don't knock myself out with fancy meals.)

Internet is good, but I understand your desire for more.

I hope you'll find people in your life who can help you feel not so isolated.

[Debby]

I hope you are open to the great advice you are receiving here...when you're down & discouraged it is sometimes hard to hear there are things you can do. I know...I was down for nearly 5 years, and while I rarely "reached out" for support, when I did I often didn't want to hear what anyone had to say...I just wanted to be depressed.

I don't mean to say you are in the same place, I just know when you ask for help on this board, you get it! Try to be open to it!

I use my cell phone exclusively now, so a blue tooth helps with the issue of not being able to hold the phone. People often tell me, "if you need something, just let me know". I've come to realize that people really don't know our true needs if we don't tell/ask them. So be brave and ask for what you need/want. Be specific. If they can't help you they will tell you, so don't avoid asking because you think you know the answer before you ask the question! Also, try to spread the wealth out so you don't burn one or two people out!

I have a friend who sometimes takes me to McDonalds, or some other fast food place I'm craving, and we just park and eat our lunch! It feels good to get out of the house for a change, and I have no need to deal with the fuss of going in. Sometimes the answers are simple.

I also spend a lot of time on my front porch, reading, napping, writing in my journal. (When the weather is warmer of course.). It helps me to just be outside, instead of huddled in the house, stuck on the sofa. Just that little change of scenery makes a difference to me mentally. It also helps to see people coming and going, out for a walk, living their lives...and realizing there is a whole world out there - that it is NOT all about me as it begins to feel when I am so isolated.

Hang in there...be open-minded and try something different today. Give yourself permission to take a step outside of your normal routine.