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 :)

You just described most of my days! :o

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. :rolleyes: 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. ;)

Me Three..:D Welcome to the "Boring Are Us" club.:rolleyes:

I consider us all "Ladies of Leisure". ;)

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)

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.

DX'ed about 3 years ago now, neurologist suspects disease activity for at least 5 years at point of dx, so I figure a good 8 years roughly with the disease under my belt...

I work a full time job and I don't suffer from symptoms day to day, except for sensory like burning/tingling (mostly from the neck up).

Medications for pain can control this for the most part, I do have break through pain though. I've not taken a day off work for 'MS' symptoms since returning to work at the end of 2008.

Everyone's very very different...:hug:

I am still teaching full time at the college level. I am 54. They schedule most of my classes in the morning when I have the most energy. When I get home, I usually will lay down for a few hours or sit and read. Until recently I had a house cleaner so I just did laundry and occasionally cooked for myself. I eat out way too often. I need to find someone else to clean for me because I am having trouble handling it along with school. I plan on taking early retirement next year when I am 55. Most of my shopping these days, except for groceries, is done on line.

I typically do most of my grading on weekend mornings because I am too fried by the evening. Evenings are spent watching mindless tv. I am usually in bed by 9:30 since I have to get up at 6:30.

I wore myself out this morning rotating the mattress on my bed and putting on clean mattress pad, sheets, and comforter.

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.

just curious....how did the person that hikes mountains and works full time, know she had MS??

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?

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.

Hi daisy.girl,

It was very obvious something was wrong. My husband traveled on buisness quite a bit, when he was out of town it was left to me to take care of mowing. We had a large yard, front and back.

One day I went out to mow (early morning). I made it half way through the backyard when my legs became weak and I felt like I would collapse if I didn't sit down. The rest of the day I spent sleeping. The next morning I felt fine, so I went to finish mowing the yard...same thing happened.

From that point on things progressed to what I now know as a full blown severe exacerbation.

By the time I saw my PCP I could barely walk, Bi-lateral leg weakness, I was numb from the waist down, I had tremors, pins and needles from the waist down, L'Hermittes, fatigue and pain.

My PCP examined me, said he could not help me and handed me a referral to a Neurologist. I was diagnosed within 3 months.

I had the same type of symptoms/exacerbation, but worse, one year later.

My friends know I have MS and I have never had a single one question the diagnosis it's self. I do get questions about the disease and how I am feeling/doing.

I am not nor have I ever been on a DMD. Have I progressed? Yes. Considering I can take symptoms as far back as childhood my progression has been minimal. My biggest challenge has always been my mobility.

Can I ask why you did not try a DMD? Are you still able to walk?

I was dx in Jan 2010, my MRI showed approximately 10 small atypical lesions. I really doubted my dx and I refused a DMD, and I began LDN. I had a repeat MRI in Oct 2010 (9 months from original)...it showed 5 additional lesions. So, at that point, my neuro said we needed to get aggressive, and I was afraid to do nothing. I just began Tysabri. I have only had one infusion. Now, I am questioning my decision.

I too had suffered for years with migraines. I started having a lot of other symptoms; however, my neuro just kept telling me they were all migraine related, then when I started having double vision and my hearing went muffled, I found a new Neurologist.....BUT still I never thought of MS. I was dx just 6 weeks from my initial visit to a new neurologist.

So, I too was dx very quickly.

In 1985 there were no DMDs. Betaseron was the first DMD to become available to the general MS population in 1993...by lottery. I did have a lottery number. At the time there were alot of unknowns about Betaseron since it was the first of it's kind. As my number came up I decided to wait and see.

Through the years I have simply decided I prefer to take my chances with the disease. I, personally, do not believe these drugs work as well as we are lead to believe. The disease is still not understood and I often wonder how is it possible to effectively treat a disease under those circumstances.

I don't walk right but I do walk and unaided for the most part.

However, I do like and use trekking poles when I will be out doing a lot of walking. My balance sucks and always has, trekking poles help to compensate and helps my endurance.

My thoughts and opinions on the DMDs are just that...thoughts and opinions. Not everyone will have my experience.

To use or not use a DMD is a personal choice and neither choice is wrong. Do what you feel is best for you. The choice you make is the one you feel the most comfortable with and the path that leads to the least regrets :hug:

Snoopy,
Can I ask about your lesions over the years? Do you have both brain and spinal cord, and have they increased?
I admire your decision. That was my initial response too, I did research the DMD, and decided the effectiveness was just not enough for me to put myself through. then when my lesions increased, I guess it scared me into doing something.....and I felt, if I am going to do a DMD, then I want the one with the most effectiveness.
Thanks for all your input!!

daisy.girl,

At the time of diagnosis (1985) I had a clear MRI.

The second MRI I had was in 2005, it was also the last one I have had. That MRI shows numerous c-spine lesions and 2 brain lesions.
The MRI report on the c-spine MRI in 2005 states "Findings are most consistant with patient's clinical history of Multiple Sclerosis."

Before you ask, if you were going to ask ;): My diagnosis was a clinical diagnosis based on a positive LP, neuro exam and symptoms. My neuro believed MS was affecting the spinal cord...he was correct.

Unless needed my neuro and I don't feel MRIs, for me, are necessary. We know I have MS and the MRI will not change my mind in using a DMD.

Always remember: Treat the patient not the MRI.

MRIs do not give the whole picture of this disease: some can be doing and feeling well and the MRI shows more activity, some can be having a relapse and the MRI shows no indication and some find the way they feel does match up to the MRI.

Thanks Snoopy....
My neuro told me at initial visit that he thought either MS or spinal cord compression; due to a very abnormal neuro exam....hyperactive deep tendon reflexes, positive babinski, positive hoffmans, positive rombergs, ataxia, nystagmus, absent abdominal reflex. I had an MRI 6 weeks prior (not according to MS protocol) that was clear......that did not sway my neuro's thought either.
He sent me for another MRI (that one showed approximately 10 small atypical lesions), went to Opthamologist (dx with Optic Neuritis), Abnormal SSEP......He dx me at my next visit.
Thanks again :)

get up at 7 am, work 10 hours a day in an IT dept for a large company, head home, take care of house/spouse/cat. Socialize with friends, exercise by taking long walks in my little town, will volunteer at courage center (it's a new thing, I start next week assisting with weekly swimming lessons), I'm on a bowling league through work (bi-weekly madness is what THAT is) and otherwise generally experience what appears - outwardly - to be a very normal life.

I was diagnosed in 2001. Presenting symptoms were mild sensory, then Lhermitte's sign. LP and MRI confirmed and I got the diagnosis. I've had few if any symptoms since. Am not on a DMD now (was on avonex, copaxone, but quit them because of complications). Recently, I have some 'shakiness' in my hands but that seems to be remitting. Recent MRI shows no progression from last scan about 5 years ago.

It's a wacky disease. I take nothing for granted because I know how it can go, and I know it can change.

becca

daisy.girl, I don't know the circumstances surrounding the diagnosis of the woman I know with MS who hikes mountains. I'm assuming she has RRMS, and went into remission (or at least her symptoms did). Her husband was one of my physicians a few years back, and he shared that with me. I know the woman casually, and would never have suspected she had MS.

*tkrik looking around for the hidden cameras Daisy placed in her house*:D

You pretty much described my days as of late, with the exception that I can't sit for very long due to the hug acting up. Once this exacerbation settles down I will be back to my normal routine.

Of course, we all have our good days and bad days and the things that I do on each will vary. I take care of the house and do the household chores, some of the grocery shopping, read, do artwork, visit with friends and family, go to the library once a week, and things like that. That is my normal routine and the one I striving to get back to.;)

BTW - I know people who have MS who are just fine and others who are in wheelchairs. I think a bigger portion of us fall somewhere in between.

A day in the life...
 

I was diagnosed in 1987 - was not working then both because of MS symptoms & injuries resulting from a serious car accident. Did go to college - was out of HS almost 10 years @ the time. Sometimes I went to school sometimes I was connected to my classes by telephone. Graduated from college in 1990 - did some advanced study - went to work in 1992.

Between 1992 & when I retired 9 years later if you added the total time lost from work because of relapses, hospitalizations & rehabs - it would be about 7 to 9 months.

After 2000 relapse when I was out of work almost 3 months I started having cognitive problems & within a year had to retire I WAS 40 YEARS OLD!

I am now 49 - I have a Personal Care Aide 7 days a week 7 days a week - I try (usually unsucessfully) to manage many things on my own. My PCA & my 80 year old mom who I live with fix my meals & help me with the "basics" that most people take for granted.

On a good day I might go to Walmart or maybe hang out at the mall. I go to 12 step meetings when I am able & I can find accessible day meetings (driving @ night is difficult because of the MS).

Most days I spend anywhere from 14 to 18 hours a day on the computer with frequent naps in between. I spend a lot of time trying to advocate to get or keep my benefits & in my spare time I am trying to start a non profit for people with disabilities. I would be a lot more productive if I could stay awake more than a few hours at a time. I take Nuvigil but it doesn't help much. On average I "lose" about 2 days a month where I literally sleep round the clock.

Leisure activities? NONE I am no longer physically able to travel & don't have the money if I could. I just ordered a camera & am going to renew my photography hobby.

My thinking is a lot slower than in the past. It takes me a lot longer to learn new things & retain what I read; numbers & mathmatics are beyond me. I get frustrated because of the memory & learning things I graduated from college on the Dean's list & now the most I can read is short stories; novels & such are out because by the time I get to Chapter 3 I do not remember what I read in Chapter 1.

I am hoping to have my non profit launched by fall & I am structuring it where most of the work will be done by other people & that within a 5 year span my role will be less "hands on" - the reality is with progressive MS ANYTHING can happen. I am setting things up where as time passes others will be active in the corporation & mine will be more of a "virtual" role.

I THINK I manage pretty well despite my limitations. Most of the time I still drive an adaptive van. Though I did not drive from December until a couple weeks ago. I was in a 1 vehicle accident that badly damaged the van when the hand controls "locked". The van was tied up in red tape getting fixed & now I am starting to drive when able. I don't drive every day & still prefer to hitch a ride with friends when I can.

I guess my biggest frustration is not so much the limitations posed by the MS but having to rely on others for support & services. As I said in another post - professionals (so called) that don't call back & then there is the infamous world of Social Services - I won't get started on that.

Overall I have lots of plans for the future depending on what kind of future the MS allows but I am dealing with other health issues as well so it is really a day to day thing.

Boy, I never know what kind of day I'm going to have when I wake up. Some days I have a lot of energy and my brain is cognitively okay; others I nap all day because of severe fatigue and I am in a fog.

I can be walking when my legs turn to jello; I suddenly walk like a drunk; I can get spasms at the blink of an eye. And my brain-oohhh I miss it so! I used to be able to multi task like a lunatic; now if an idea comes into my brain, if I don't write it down or record it on my phone microphone, that fast it's gone. My bladder has days when I feel like an infant, which is quite depressing. I think I have toes, because I can see them, but I can't really feel them; that was my first real indication of trouble and sent me to the neuro. It took 3 years to get a dx.

I do spend a lot of time watching TV, on the computer, or playing with my puppy. It's difficult to read, because my attention span and memory of what I've just read are not good.

I do try to work out at least 3 times/week, and try to take the pup for a walk daily if it's not slippery outside. I also take the Wii out and do exercise on that.

I have been denied once for disability, and am waiting for the final decision on appeal. I can't work due to leg instability, cognitive dysfunction and bladder issues.

I try to make lemonade out of the lemons life has given me, and it's been sweetened by the most amazing spouse on Earth. I am truly blessed.

I've had MS for 30 years. Back when I was working I worked nearly nonstop. Nowadays I work nearly nonstop at just taking care of my daily life's details.:)

I get up every day at 7 AM, make breakfast, feed the cat, comb and brush her, dress, make the bed, wash dishes, tend to the cat's box. Then I get on with whatever I have to do that day.

Sometimes it's a medical or dental appointment. This can take many hours because of the waits for transportation. I use a paratransit van system and have to schedule rides a day or more in advance.

Other times it's laundry, ironing, cleaning the bathroom, washing the floors, dusting, vacuuming. I take care of a few plants too.

Sometimes I have to change light bulbs or do repairs. Other times I have to do what I can to get rid of the ants around here. I have a toilet that backs up often, and I take care of that with a snake and a plunger but it's a procedure that can take an hour or so.

I make a salad for lunch, and after eating it and washing up the dishes, I take the trash out to the dumpster and get the mail and deal with it. Then I go to sleep with my feet elevated (to prevent swollen ankles/feet) for about an hour.

I brush and floss my teeth every time I eat--and that is 4 times a day. I try to take a bath every day and wash my hair every few days. I also have to set my hair for it to look halfway presentable. I cut my own hair every month or so.

I mend my clothes if they develop problems. In my spare time I'm patching up the quilt that has been my bedspread for many years.

In the rest of my spare time I listen to Talking Books from the library and sometimes watch a DVD movie from Netflix while I eat popcorn I've made in the microwave.

I write letters and try to keep up with my accounting. I'm responsible to HUD and the social services system (Medicaid) and have to save and present lots and lots of receipts.

In the late afternoon I make dinner, which is usually a frozen meal I put into the oven or just cook on top of the stove. Then I wash the dishes and put them away at the end of the day.

About once a week I wait for a grocery delivery from an online supermarket home-delivery system. Prescriptions are also delivered. I buy most things through mail-order but sometimes take the paratransit van to a store to find things I need or want.

Sometimes I take photos. I spend a good bit of time online. I'm also busy clearing out a lot of papers I've saved over the years.

Evenings are the times when I work on the papers or watch a movie.

I also exercise--a few minutes every morning and at bedtime, and half an hour in the evening with an exercise DVD.

I'm off to sleep by about 11.

I don't go very many places but that is all right with me. Buzzing around can be tiring.

This whole account doesn't add up to much. I should mention that when I have occasional work to do, I put everything on a back burner until I get the job done. This happens once every few years.

I keep track of my medicines and set them up for each week. I also have to remember to do eye drops and oral moisturizers and other maintenance tasks. My wheelchair, glasses and hearing aids need regular routine attention too.

Just trying to stay afloat can take lots of time and energy.

Agate, you are so organized.:) My day would be much like yours, if I wasn't such a lazy butt.:D

I pretty much do what I want to do when I feel like doing it, these days. I do keep my home and myself clean and neat, because I like it that way.:p I take good care of my old pupper.

Everything else I get done between TV time and PC time.....IFFFF I have the time..teehee!:o

The truth be known, I have never been an organized type humanoid, though, so why start now..:D

You put me to shame:wink:....not really..:hug:

Sally, I should have mentioned that I don't watch TV. If I did I'd never get anything done.

I keep trying to remember to dig up shows I used to look at sometimes and see if they're still there but the TV schedule is so hard to read that I give up.

As it is, I turn the news on for an hour of local and national news but even then I'm usually doing something else while it's on.

I get irritated at all of the commercials.:ranting: