When others start to notice... (Need to vent)

[Cira]

This last week has been really tough for me. When all of this began, my initial symptoms were really only noticable to me. They didn't affect my movement and no one knew what I was experiencing unless I told them.

Lately, that has changed. My right leg has been persistently numb and hypersensitive to many sensations. Spasticity has also been an issue in both of my legs, but particularly my right. I now have a noticable foot drop. My balance has been off and I often lurch to the side for no reason. All of this combined means that I walk as if I'm drunk and limp for no (visibly obvious) reason.

My coordination in general has also been an issue. I drop everything. I often have to try twice to pick up smaller objects or do things like flip through papers. I try to laugh it off, but it's gotten to the point where it's becoming frustrating, especially at work, and it is just a reminder of the fact that something is wrong & right now, there is nothing I can do to change it.

Anyway, I've noticed that others are starting to notice. I've started getting concerned looks from coworkers. I've seen people stare - probably wondering what is wrong with me or if I've been drinking. But the crowning glory was when my 7yo niece asked her mom why her auntie keeps dropping everything & if everything is ok.

I feel bad that the kids are even starting to notice, and I hope that my oldest son (6yo) is oblivious. I don't want them burdened with this any more (or any sooner) than they need to be. I don't want them to worry when we don't even know for sure what is going on.

I also hate that random people see it. I hate the looks of pity & curiosity. It's embarassing to me. I feel weak & I don't like it.

I guess I'm just having an off day. Thanks for letting me vent.

[michelerenee]

Cira-

i'm sorry to hear you are having these issues. I can only imagine what that must feel like. I have savored the fact that I can keep my dirty little secret a secret for now.

my six year old did ask me the other day why I nap so much and always tired which just breaks my heart. I try to just blow it off and joke but my oldest is ten and I know she hears people ask me how I am doing etc.

I have no wise words..lol..just wanted to i'm sorry.

michele

[Cira]

Thanks, Michele. No wise words are necessary - an understanding ear is about the best thing right now, I think.

It's been a difficult week all the way around & I just needed to get all of that off of my chest, you know? I've felt pretty down & I need to resist the urge to throw myself a pity party & keep on keepin' on.

I never thought I'd look forward to a dr appt, but I really can't wait to see my neuro, get on the path to some answers & maybe start getting a little relief from the symptoms.

I hope you also start to feel better. I know how difficult this when you have kids to care for.

[FourPaws]

I understand - some of my most noticeable and embarrassing moments come with my forgetfulness and problems with talking (forgetting words, what we're talking about, substituting one word for another). I just had a thing this weekend where I was constantly having issues with that and it's frustrating as heck.

The best advice I have is to take those moments and as soon as you can do it, let them go. Don't beat yourself up over them. I know this is way easier said than done, but try and find a way that you can visualize that. If you can look at your problem like a balloon or a bit of dust or whatever, you can toss that away or let it go.

Hang in there and remember to treat yourself as nice as you'd treat someone else you knew that was in the same position.

[swingingwillow]

Hi Cira,

I'm a limbo lander but can relate to some of your experiences and feelings.

In terms of people starting to see your symptoms at work I don't have advice but I'm sure that someone will come along and be able to offer some sound words.

I did have some noticeable symptoms at work but I could always say things like "Oh, I slept funny on my leg or something" or "Oh, that was a bad muscle cramp" and just brush things off like that. You may not be able to do the same.

Lately my neighbours have noticed and they've been very good.

When people stare in a store it makes me angry but then if I saw someone walking around looking drunk I would look too.

I can tell you what I have done with my daughter who is nine. She has always known that mommy's legs hurt and so I try and keep it simple by blaming everything on my sore legs. She is empathetic and doesn't seem to be bothered or upset by it and in fact can sometimes be helpful. I just keep it simple with her. That works for now.

Take care,
swingingwillow

[jjs]

Personally I believe it's much better to just be honest with others - especially our children. Many adults looking on are really good at making their own conclusions, and more often than not their conclusions are wrong. A simple statement like, "I have been having some neurological issues but I'm seeing a doctor" would suffice. As for children though - they really need to know what is going on so they can be of help ... because they WANT to help!! If they do not know what is wrong, they might be scared and confused. If they know what's wrong, they can feel big and important (because they ARE!) knowing that mom or dad needs their help.

I believe it is best to embrace the problems and face them head on. I think trying to hide things from others adds all sorts of unneeded stress (on your part) and confusion (on theirs).

My personal experience: I was not sure if I was going to share with others or not, however they were getting so concerned and, let's face it, they are not stupid! There came a point when I had to share and then I "wished" I would have done it much earlier. People want to help. People care. They treated me different at first (meaning, they were afraid to ask me to help them in whatever situation because they didn't want to burden me or stress me out) but now they are getting used to it and they know that if I cannot help I just say no.

My children knew right from the start though. I never would have made it this far without their help and care. They are older than yours - when this all started they were 14, 16 and 18 but now are 1 1/2 years older.

[FourPaws]

Also - limbo or not, using a cane helps. Not only is it easier to walk, but it's like a 'get out of jail free' card. People don't question you if you use a cane like they would if you don't.

[jaimirenee]

telling the kiddos...

cira,

i was recently diagnosed and am still not sharing with anyone outside of the very few (less than a handful!) closest to me...two of them being my kiddos

i'm a single mom and my children are nine and four...i did A LOT of online research and downloaded a book (awesome!) from the national ms society's website...when i finally raised the courage to talk with them i was pleasantly surprised at how well it went and how much better i felt afterwards

my son didn't necessarily understand (four)...he just got mad and wanted to kick MS's butt!...wait, maybe that means that he really did understand lol!

my daughter (nine) was extremely upset at first and needed quite a bit of reassurance that mommy is not dying...however, she started to ask questions (great questions i may add) and in the end, made me one proud mommy (as they always tend to do )

best of luck to you and i'm sure whatever decision you make will be the right one for you and your children

hopefully i did this right....MY FIRST post

[gomer]

"Personally I believe it's much better to just be honest with others - especially our children."

I have to AGREE! (with the above)

Do NOT assUme your 6yr old is not aware of your MS problems! Little ones observe and notice a lot more than we often give them credit for. Often time they are AFRAID something serious is wrong and might loose mommy or daddy. Imaginations are usually worse than reality. It's a lot better to NOT avoid telling, in words etc they understand.

Just the other day my 5 yr old grandson noticed my using an insulin pen (looks like a marker). He piped up and said he did not like shots. An insulin pen has a very tiny almost invisable needle to it yet he equated it to shots he gets at the doctors using much larger needles and look very different (syringes).

Gomer

[Cira]

Thank you all! You have all given me things to think about, as well as some great advice.

I do agree with those of you who said it is best to be honest, particularly with our children. I have always strived to answer their questions honestly but age appropriately. Right now, I was hoping to avoid the questions, though, simply because I don't really know anything. My niece's questions were answered simply but honestly. My son, who is not nearly as observative as her, has not asked any questions, but I do plan on talking to him. I know that he may be noticing more than he's letting on & I don't want him to feel any fear about this whole thing. He's lost A LOT of important people in his life in the last couple years & I don't want him to fear losing me. So I will talk to him before my appt for sure.

My coworkers do know what's going on, at least to some degree. They don't know that I suspect I have MS, but they do know that I'm seeing a neuro. They are some of the best coworkers I could ever ask for & I love them to death. They mean well & I know they are just worried about me. None of them has ever said or done anything to make me feel bad at all. The problem is me & my discomfort with being worried over. I don't make a very good patient. Guess if I'm right about this being MS, I'll have to learn.