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Old 02-27-2011, 01:24 PM #1
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Default Can you all describe your day?

I have a warped view of what I think MS patients can and can not do. I would love to hear what a typical day is like for you all??

I have been dx since Jan 2010, I have not worked since 2007. I spend much of my day sitting on the couch. I do the laundry, and cook most of the meals. I do go out to the store, but I do not go 'shopping'. I really only can handle one hour out at a time.

Thanks
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Old 02-27-2011, 01:34 PM #2
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Originally Posted by daisy.girl View Post
I have a warped view of what I think MS patients can and can not do. I would love to hear what a typical day is like for you all??

I have been dx since Jan 2010, I have not worked since 2007. I spend much of my day sitting on the couch. I do the laundry, and cook most of the meals. I do go out to the store, but I do not go 'shopping'. I really only can handle one hour out at a time.

Thanks
You just described most of my days!

I don't work anymore (not since 2007). Used to work 60-70 hour weeks.

Since I no longer have a car (got rid of it for financial and health reasons) I usually stay home unless someone picks me up. But that takes a lot of planning on my part. My usual "outing" is a trip to the grocery store but, like you, I can only handle about an hour. There are usually several days in a row that I don't go anywhere.

I still cook and clean, do laundry, etc. But it's all done in little intervals......when I have the energy. Most of my time is spent either reading, watching TV or on the 'puter.
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Old 02-27-2011, 01:52 PM #3
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Me Three.. Welcome to the "Boring Are Us" club.
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Old 02-27-2011, 02:30 PM #4
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I consider us all "Ladies of Leisure".
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Old 02-27-2011, 02:45 PM #5
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As far as what MSers can and cannot do, you might get as many different answers as the number of people who respond!

I know someone who has MS that hikes mountains, works full time, and actually has a life. (And yes, she really does have MS)

I know someone else who has MS who is in a wheelchair, sleeps a great deal of the time, and gets exhausted folding a few towels.

I fall somewhere in that huge "in between".

Most of the time, my life looks pretty normal, as long as you're talking normal for a person 25-30 years older than I am. (I'm 60)
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Old 02-27-2011, 03:09 PM #6
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each day can be the same or quite different. Many days I have the energy to clean, cook, chase animals, and go to meetings, and events and see friends and family. There are other days that I am quite tired and when I feel my gas tank running dry, I know its time to schedule some quiet things to do. TV, computer, reading, catch up on phone calls, and the like. Things that dont involve me being on my feet.

I have days that I can walk around the whole block and other days that I dont want to walk to the kitchen.
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Old 02-27-2011, 07:43 PM #7
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Quote:
Originally Posted by Blessings2You View Post
As far as what MSers can and cannot do, you might get as many different answers as the number of people who respond!

I know someone who has MS that hikes mountains, works full time, and actually has a life. (And yes, she really does have MS)

I know someone else who has MS who is in a wheelchair, sleeps a great deal of the time, and gets exhausted folding a few towels.

I fall somewhere in that huge "in between".

Most of the time, my life looks pretty normal, as long as you're talking normal for a person 25-30 years older than I am. (I'm 60)
just curious....how did the person that hikes mountains and works full time, know she had MS??
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Old 02-27-2011, 06:12 PM #8
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What my day is with MS has varied through the years.

I was diagnosed when I was 24 years old, married 4 years at the time. I worked, played, socialized. We have moved several times through the years, yes, I am still married to the same man...2 months from 30 years.

We had 2 children who are now 19 & 21. I was a taxi driver for them and their friends, a soccer mom, I took them to Karate, Birthday Parties, swimming, indoor fun zones. I participated in school parties and always attended parent/teacher conferences.

I have a house to run and when we decide, like now, it's time to update I am the one who shops around and/or gets estimates. I still shop...I love shopping . I get together with friends when schedules match. My husband and I go on vactions, we go camping and go out on dates. I load the RV and my husband unloads and cleans it.

We have always had animals (dogs and 1 cat). I am the one who feeds, takes them to the vet and when the time comes take them and stay as they are put down. I am the one who handles the bills and banking.

I try to exercise at leat 5 days a week.

I also have days nothing gets done.
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Old 02-27-2011, 07:48 PM #9
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What my day is with MS has varied through the years.

I was diagnosed when I was 24 years old, married 4 years at the time. I worked, played, socialized. We have moved several times through the years, yes, I am still married to the same man...2 months from 30 years.

We had 2 children who are now 19 & 21. I was a taxi driver for them and their friends, a soccer mom, I took them to Karate, Birthday Parties, swimming, indoor fun zones. I participated in school parties and always attended parent/teacher conferences.

I have a house to run and when we decide, like now, it's time to update I am the one who shops around and/or gets estimates. I still shop...I love shopping . I get together with friends when schedules match. My husband and I go on vactions, we go camping and go out on dates. I load the RV and my husband unloads and cleans it.

We have always had animals (dogs and 1 cat). I am the one who feeds, takes them to the vet and when the time comes take them and stay as they are put down. I am the one who handles the bills and banking.

I try to exercise at leat 5 days a week.

I also have days nothing gets done.
I guess....I have the same question for you. How did you know something was wrong? It sounds like you have a very full and normal life. Do all your friends know you have MS? Do they ever question your diagnosis?? So, you have not progressed much in 25 yrs? Are you on a DMD?
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Old 02-27-2011, 08:25 PM #10
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In my case, I had neurological (sensory) symptoms while in relapse that piled up.

I thought for years it was migraines. I took over the counter stuff, nothing worked.

I had pain in the left side of my face for a good 2 years (probably more), then my pinky and ring fingers started going numb at work.

It wasn't until I was under a lot of stress (work, house, relationship) that I got really bad. Woke up in what I called 'convulsions' (they were more like tremors I now know) and that's when I started to seek answers.

I had very severe vertigo x2, the feeling of a leg 'missing' (it still worked mind you), L'Hermittes Sign and Girdle-Banding (both were my 'hallmark' symptoms of MS - anything else I've experienced, down to the most painful, Trigeminal Nerualgia and Burning Mouth Syndrome, are conditions that can exist outside of MS, but TN is more common in folks with MS than the general population without MS).

I know I'm missing a bunch of what exactly happened to me during that limbo time of going off work to start seeking answers. I had symptoms come and go without warning. I was so 'ill' I couldn't work. I was depressed and just wanted to go to sleep and never wake up.

I knew the magnitude of the situation when I thought, "I've never been so depressed in my life". It's true. I don't imagine I'll ever feel that low again.

I came out of the 'experience' stronger and wiser though, and I thank my strong will and family for being there through it.

It's tough for people with very typical MS symptoms to get a diagnosis.. I count myself VERY lucky that, while it took a year or so, it ONLY took a year or so, and most of my symptoms were very non-specific to MS. Many try for years to get answers without luck.
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