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Multiple Sclerosis | Sclérose en plaques

Started by eleika at 03-03-2010 11:40 AM. Topic has 9 replies.

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03-09-2010, 10:40 AM

eleika

Joined on 08-11-2009
Posts 15

Re: In which I feel a bit silly

Hi Toebee,

At first I was very secretive about it, but these days, I'm not. In some cases, I think it's useful. Depending on how safe you feel about your job, you may or may not want to share. I feel very safe at my job and everyone knows, but that could be the nature of the job (we help a certain sector of people with disabilities, plus it's union). That could just be my experience, though.

At least there are people here with similar experiences, with whom we can connect!

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03-09-2010, 10:36 AM

eleika

Joined on 08-11-2009
Posts 15

Re: In which I feel a bit silly

Thank you. That's a very beautiful (and passionate) piece of writing.

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03-07-2010, 2:32 PM

Korgary

Joined on 09-26-2009
Posts 314

Re: In which I feel a bit silly

Hi there, I found this on the web..it is a poem/story about having MS that was written by Viginia Sanchez.....

Eleika, this might ease some of your feelings, regarding the posts that you have made..... it explains how we are from one end of the spectrum to the other when it comes to this mysterious disease...

It is titled

Who are the people with Multiple Sclerosis?
by Virginia Sanchez

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us.

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are every person. We are the People with Multiple Sclerosis. We are People, Just Like You....

Gary

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03-05-2010, 8:39 PM

toebee

Joined on 02-28-2010
Posts 3

Re: In which I feel a bit silly

I really like this topic...as I have felt the same way. I was offically diagnosed in the fall and I should be starting my meds in the next week or so. I work full-time (or more) in a very stressful job and there are only a few people at work who know about the dx. My symptoms are pretty hidden - mostly sensory and a 4 month bout of optic neurtis. People keep telling me to take better care of myself, work less, eat better, exercise, blah blah blah. I know they mean well but it's strange when I feel good 80% of the time and people really wouldn't guess that I'm diseased (the fun new joke with me and my friends). So, I guess my point is that I understand the guilt because I read so much about people who can't walk or who really seem to be suffering...and I guess we should just feel lucky that our symptoms aren't that bad...

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03-05-2010, 5:00 PM

Korgary

Joined on 09-26-2009
Posts 314

Re: In which I feel a bit silly

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03-05-2010, 4:30 PM

Korgary

Joined on 09-26-2009
Posts 314

Re: In which I feel a bit silly

Hi there,k yes most do work, most do get by day by day with only exhibiting hidden symptoms......the ones that you have but no one can tell. Fatigue is the number one reason why people quit work, as it plays havoc with cognitive skills.

I am a manager where I work, so I have my own office, so during breaks I just close my doors, and yes close my eyes for a bit....there are the days that I dont get a chance to do this, and on those day, come the afternoon, I get pretty much plowed under. I have to be really careful driving home, and there are many of these day where I have to stop, pull over, and snooze for a bit....

So u are not alone .... so does this mean you are going to join this big family of ours..why not, even though u might not know it, I bet you have info that will be of much value to all that visit this sight..so pull up a chair, start typing, and hang on for the ride ( it does get a bit bumpy for all of us)

Gary

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03-05-2010, 11:02 AM

eleika

Joined on 08-11-2009
Posts 15

Re: In which I feel a bit silly

Yeah, I have RRMS, and I've generally been okay for the last year or so. But thanks, I feel a lot better about all of this.

Another guilty admission ... I was suprised to read that so many people here work full-time. Between everything I've read about MS, and my very kind nurses at the local MS clinic who constantly offer me doctors' notes for sick leave (when I'd rather just suck it up and work), I came in with the impression that having a full-time job was rare for MS patients. Glad to know I'm not alone in this! It was another factor in the "I'm not sure if I deserve to belong here" feeling.

Normal? I was NEVER normal. ;)

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03-03-2010, 10:01 PM

Korgary

Joined on 09-26-2009
Posts 314

Re: In which I feel a bit silly

Hi there and quite the interesting post. This is a very strange disease, and with it comes varying degrees of disability, be it physical or mental. I would not feel silly or guilty, and I would certainly not pretend that you are normal, cause you are normal!!!! Ha....risky statement for me to say seeing I don't know you at all. I claim to be normal, but there ae times when my wife thinks otherwise....LOL. Although there are some that have physical disabilities - and some are in the progressive stages.....the most common type of MS is the RRMS, and with this, the symptoms can appear to be mimimal, as they remain invisible to everyone but yourself. Where you are lucky is getting a dx within 8 months, which is quite impressive, seeing that the average is at least 2 years.

So I would not feel silly because u do not exhibit outward physical symptoms, but yes lucky that you do not have the progressive types of MS - and I feel very lucky too....as I work full time, and ride motorcycles, and skidoos, and go boating. But then from time to time I am reminded that I am still part of the MS family - with the dizziness, vision problems, trembling, tingling, numbness, heart palps, anxiety.....all of which are invisible to others. And so far they have not all hit at the same time...I could not imagine!!!!

Im trying to be a smarty pants here, so take it as such......I'm sorry that you got the invitation to the MS party, and should u wish not to attend, we will understand, however if you want to join the rest of us, you are more than welcome to remain as part of the family - and yes, you don't even have to feel silly either

Have a great day,

Gary

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03-03-2010, 2:08 PM

vnisbetrumboldt

Joined on 12-22-2009
Posts 7

Re: In which I feel a bit silly

I have those exact same feelings. I was diagnosed about 13 years ago and since then I had only had a couple of little relapses until about 3 months ago. It felt for years like there was nothing wrong with me and then my last relapse happened and it all hit home. I'm still very lucky though because I am healthy and mobile. My Neurologist treated it right away and I started Copaxone. I mostly just get very tired very easily and I can live with that. I know I'm lucky as well but I don't feel any guilt, I just feel lucky.

Veronica

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03-03-2010, 11:40 AM

eleika

Joined on 08-11-2009
Posts 15

In which I feel a bit silly

This is the first time I've really read the forums. I've kind of been avoiding them because I feel ... well, guilty, or undeserving.

I was really, really lucky. I noticed my very first episode (numbness and tingling), and my doctor was on the ball. I got my diagnosis in about eight months, after my second epsiode of the same in a different place. I was on Copaxone a month later.

I've had MS for about four years, five if you count from the first symptoms (wow, it's been that long), but aside from slight problems with my eye, from which I recovered about 95%, and repeated episodes of numbness and tingling with various random body parts (I just *love* it when I get that feeling as if whatever body part is currently numb feels like it's constantly unfreezing from a trip to the dentist's office), and nasty heat intolerance, I've been okay. The heat intolerance is annoying, but that's what ice vests are for.

I deal with it. I live my life. I take my daily Copaxone like a good little girl. I try to pretend I'm normal, because from everything I know about MS, I have it *very* good. I guess you could call it a form of survivor guilt.

It's not that I haven't accepted that I have the disease. Maybe I just feel as if, because I have it good, I don't deserve to count myself as someone with MS, or identify as having a disability. Considering I work at a goverment service for people with another type of disability, the irony is not lost on me.

But I don't know what to think anymore. Is it weird for me to feel this way?

Well, at any rate, hi. :)

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