I didn’t want to put this on the forum, but then I can’t email it to you, and I certainly understand why.
That being said, I need your council.
For almost a year now, I have tried to understand my MS. Like most of us, you
know that individuals are as different as is their symptoms and DX.
I am going crazy trying to get a grip on this medical problem. I thought
I finally accepted it, but somewhere deep inside, I keep looking for it
to go away. My wife calls it my Superman complex. Being very
active all my life and then MS, is like working your way up the
racing circuit, until you have the poll position of the Indy 500,
and instead of the fastest car on the track, someone hands you
the keys of a broken down, rusted, rambler.
I have read, as others have, of people that have one exacerbation and
feel great for years. I have read that some people never have any more
problems after their DX.
I read about how people go through a remission and all their symptoms
So after you read those things you become full of self pity, or wonder why you don’t do that,
or when, is this darn disease going to give me a break. But every day
is a struggle and you start wondering if you are already at SPMS
or even PPMS. Especially since the doctors didn’t classify you or really
tell you how you would feel day after day in the real world. Or what
you can expect as the months, year, years go bye.
So we have MS forums, where people struggle to have real time
concerns and questions addressed by peers that certainly have
lived the MS life, although maybe a bit differently, but still are living it
everyday just like me.
I have read that “older” people have a higher chance of going straight
into SPMS or even PPMS then their 40,30,20 etc counterparts.
The fact that in the upper 50’s, your brain is already starting to reduce (atrophy)
and your body is already moving itself to old age status, you shrink in height,
your vision is affected, etc. plays a role when MS hits. And in many older
cases, MS has been there for years. Older people don’t have as many lesions
but their gate/leg problems/leg weakness is worse almost at the outset of the
Now, you may want me to get to the point. Fair enough. I had ms symptoms
and ON... months or maybe a year before an Ophthalmologist at a routine exam
caught the ON, and started the ball rolling. 3 weeks later, I had what I now know
was a major exacerbation. Putting me down for almost 4 months.
But as others believe, I was told that the ON would go away and there
shouldn’t be any after affects. (But the ON messed my eyesight
pretty well in one eye and 8 months later, I have been told it won’t recover.)
In the meantime I waited patiently for the symptoms to go away. They never
have. Most have lightened or I have learned to tolerate them, one major symptom
(needles and pins) hasn’t been around very much. But in the same sentence,
I have gained NEW ones. And my cognitive abilities seem to be slipping steadily
as is some of my motor skills. Both were there at the onset and have never left.
I used to carry a fold up cane with me, just in case. Now I use it almost everyday.
When I do walk, even with a cane, say all day with the grandchildren, the pain and
cramps in my legs at night overwhelm me and no med touches it. (I am glad
I have a desk job in my own office, and don’t have to walk much)
Between my not so hot vision, my legs, and cognitive problems…..getting vertigo
is pretty simple . Its not that I am incapacitated, can't walk, can't speak, can't
drive or have pain and symptoms that would equal getting hit by a truck....all the time.
But the degrees of pain and symptoms change by the minute sometimes,
and just plain wear you out, siphons your soul.
And of coarse the good old exhaustion and depression. The anti depression meds
do allow me to maintain through all of this…..And I am grateful. But even they
can’t suppress the urge to “snap” at people, or simple cry for no reason….it still happens,
just not frequently
And exhaustion. I do ok until around 11am getting up around 6am to get to work. After
that I am pumping Provigil. And when I get home, I struggle to stay up until 8pm
and just can’t deal anymore. Mondays are usually ok if I sleep the entire weekend
but by Friday... I can barely deal with anything or anyone. I am so exhausted that
go straight to bed when I get home. It is kind of sweet, my wife of 30 years plus,
comes in, kisses my forehead, tells me she loves me, lets my dog in the room
which jumps on my bed, and lays on my chest looking into my eyes, waiting to make sure I am alright.
If I am lucky, I will sleep until noon or better the next day.
I feel crappy every day of my life, no good days or even better days. It is getting harder
and harder to accomplish anything at work, and I love my job. These days the only time
I feel better is when I am asleep (and I have to take sleeping pills every night) or on a Sat...
getting up late, feet up on the couch, and reading or watching TV. I doze in and out and
pretty much the weekend is a wash. I try to get the lawn mowed, rake the leaves, weather
proof the house for the upcoming snow…..but the consequences of doing these things is
now obvious to me, and although I have do these things, I know I will pay a heavy price later.
I had an allergy reaction to Rebif, and having troubles with Copaxone…primarily that
I just can’t inject anymore. I don’t know why, something in my head. LOL. (not
meant to be funny) I am investigating the low dosage.
I read what you said to Sandy the nurse. Absolutely wonderful…..”ramblings of an
old lady” my foot. It was insightful and full of truths.
But uppity, is this the best I will EVER feel? Does everyone feel
so crappy everyday or does it indicate something else. The above goes on everyday
(and more) and has for the last year. Do I feel this way because I am getting worse, maybe at the
a different stage, or this is RR and worse things are coming? I know that you
finally left work and are in a wheelchair (if my mind still works part time)
So you must have traveled the road.
It is hard for me to digest that 500,000 people in the US alone, feel like I do
every day. And it never quits beating you up. And if this is what I have to
put up with everyday, my next excerbation should pretty much take me
out. The last one (the only one so far) was horrible, even for me.
Don’t tell me to talk to my doctors. Although I love my doctors and have
a great relationship with them, they do not have MS.
Others, feel free to jump in, but I am more interested in hearing what
normal day feels like for a person with MS and how you know when
you are getting worse. What real time criteria moved you from RR
to SP for instance. Who said you were now disabled, needed a handicap
sticker, stop driving, get a wheelchair. And I am very interested in hearing
from people that were 56 or older when they got MS. How are you now?
And, not being rude, but the last thing I would like to hear is that
someone, who has been officially DX’d has had no symptoms
for years and what their daily world is like. Because mine is as
far away from that as Earth and Saturn.
Uppity, nothing has ever broke me. Not combat, not climbing the ladder, not
physical injuries, nothing.....but it seems that MS
is trying very hard and is chipping away very successfully. I know that you cannot
answer all the things, because of the nature of the beast...no one really could.
So don't get hung up with "I'm sorry's"
and I thought the DX and doctor part of this game was tough..........it doesn't hold a candle
to this frustration.
PS. Rhonda, I am sure there is a limit on words. Sorry this is a book.
But it needed everything to have others know where I am and especially
Oh. You asked about labels. I did experience a number of years early on when I moved from exacerbation to periods of relative calm to exacerbation to calm...each exacerbation bringing more and more disability. And the periods of calm -- I still had ALL the symptoms that I had prior to the exacerbation..and more...but they weren't as intense, some of them just were "hanging out" in the background", and I was able to deal with them.
By the time I started on Betaseron, about 13 years ago, I was still experiencing exacerbations...but the symptoms weren't lessening in between at all....for example, I'd get a period of time where I had NO use of my legs...and then slowly be able to stand, and walk again..with great difficulty.
..."I used to love my job, now I watch the clock in my office, waiting, waiting.......what am I waiting for.....to see my kids and wife,to go golfing with my friends, to play with grandkids, to catch a game on TV.........no.....I waiting to get home..get something in mystomach and go to bed, so I can try and make it again tomorrow"...
Hi Snowdog... thought I would throw my 2 cents in here.... in my opinion you are working way too much. I am also learning this the hard way. If all you have energy for is getting through work, you can have no quality of life at home. I have been continually cutting back my hours at work trying to find the right balance. When I overdo it, every single symptom feels worse. After I was told to take a week off, I felt 60% better. Now that I am back at work, it's worse again. Everyone keeps telling me "listen to your body". Now that I am, it is clearly telling me to take more time off, and rest. I sit at a computer all day and thought "what can be so tiring about that?" ... well mental exertion is what is so tiring and affects everything else. Your health has to come first....
Saturday noonVIEW IMAGE
Thanks Uppity....I have heard that saying before, but cannot take credit for it here...
Snowdog....just take a deep breadth my friend. Then take another one.
I was dx'ed at 30 years old..19 years ago....and I had heard that 30 was the "correct"age to be dx'ed. Old enough to be mature enough to understand things, but not too old to feel like this is so unfair to me as I get close to retirement age....
We have all been crapped on by being MS patients.
But...I know, from my perspective, it is just how you deal with the cards that have been dealt to us....
I don't know...seems like you have some pretty good things goin' on in your life....loving wife, loving kids and grandkids...even a dog who loves you...
I have been on SS Disability for @5 years. I REALLY miss working....but I cannot anymore....
Heck, isn't worth $20.00 to pay some kid to cut your grass and shovel the show? Things have just changed for all of us...It kills me that my wife has to take out the garbage every week................
I'm sure you miss playing with grandkids outdoors...
But that will not change the amount of love they have for you...
Have you checked with your state MS Society (or National MS Socety) , because they have publications regarding issues you have brought up...
And I use a wheeled walker...and sometimes need a wheelchair...just as it is...once I got over the male ego about using such aids, things were o much easier. I view the use of such aids as a badge of courage.
Very good luck to you....I agree with the disability
idea...I know (we all do) about the fatiug thing.
But as much as we have all been crapped on, life is great
Great luck. John
I also am 59, been married 38 years and in about the same boat snodog is in
Reading these posts has helped me alot. Uppidty is a fountain of information. I have some physical issues, arms ache to hold up , balance is off, drag right foot, many others, but none real major. My real problem is cognitive. I may have to leave work because of it. Life sure is interesting isn't it? I guess I just wanted to say thanks to all who post here and ehlp us understand life a little more. Linda