Symptoms: Don't ask, don't tell?
 

There's another side of MS Awareness (which I'm FOR, by the way)

While I was working, I had reasons for not advertising all of my symptoms. I thought once I retired, it wouldn't be an issue, but it's not that simple.

I don't want my family to hear "cognitive dysfunction" and think, "Should she be driving? Is she remembering to pay her bills? Is what she's saying true, or is she confused?"

And I have some symptoms, mostly occasional, that I don't want to talk about at ALL, much less have people thinking about every time they look at me.

Just a couple of examples of how "awareness" is a two-edged sword sometimes.

I agree with you... unless my hubby can "see it' tremors, spasticity I don't tell him.. don't want him to worry.. he now works 4 1/2 hrs away and I only see him on weekends until we sell the house.

Cindy:wink:

:D Yup. With you on this one.

I totally agree with you on this one. Apart frm the fact that I don't want to appear like a major whinger or wet-blanket to friends and family, the cognitive side terrifies the heck out of me.

It is sure enough hard to come to terms with all the MS stuff ourselves without others making judgements about us. The cognitive side is particularly delicate - as you have said, people may look at you, and treat you differently.

So yes, it is a double edged sword.

in the early days, I was vocal and everyone wanted me to share with them. As days passed by and friends fell away some made the comment that they couldnt hear it anymore. :eek: I said YOU ASKED! do you want me to lie? and some said...yes! I want to be able to ask my friend how are you, and hear a short simple to the point "im good, and you?" without having to hear that the heat is making your MS crazy or your vision is better today, but still not quite right. So...I shut up.

Now when folks say "how are ya?" I said "im good! and you?" so, unless I have some horribly visual stuff that I cant hide, im no longer sharing. Folks only want to hear it a couple of times, but as far as being a long haul thing...nope, they get tired and want to run off. Well, I want to run off too!

im with ya. dont tell um!

There are just a few people that really want to hear the truth. And I know who they are. They're the ones who know I'm stretching the truth to say "I'm good" and tell me they know otherwise.

Anyone else I just say "I'm good...how are you". And the ones who don't want to hear how I really am are the ones who launch into a detailed explanation of how they are! :rolleyes:

It all depends on who is asking and why as to what I might share with them.
Having said that, I think that it is vitally important to have at least one person who knows what is going on with us and who can just be with it, without feeling the need to remedy the situation. This forum really does serve that purpose. Thank you.

A friend who is my confidant once said this to me.
"I don't know what to say or what to do when things are not good for you. What is the best response to someone who is having problems that I don't have a solution for? Part of me just wants to hide or avoid them, yet I feel badly when I do."

I told her that the best response is the honest one. "I'm sorry that you are going through this."

Nothing more needs to be added. Offers of assistance are appreciated for sure, but just the expression of compassion can be the greatest gift to both the one who is suffering and the one who wishes that the situation were different. It gives both the courage to face the most difficult of situations.

It is hard when our friends drift away and I've even had the experience of someone who I was close to once, avoid me in a public place when she saw that I was on crutches. I know that it was fear on her part...the not knowing what to say...so she ducked away into the crowd for safety. It broke my heart and I wished that I could have told her that a simple "I'm sorry...", works when we don't know what else to say.
It replaces our fear with courage when we encounter those who are having problems of any nature.

When I have shared this response as a suggestion to others who have friends and relatives that are facing challenges, they have been thankful to know that such a simple response is all that it takes to maintain the bond...no strings attached.

How sad that many adults don't know this...but most children do.

Erika

While my sister was here last weekend visiting she kept saying "we've got to think of something you can do".

:confused::confused: I finally asked her what she meant. She said I needed a hobby or something to keep me busy.

:rolleyes:

I told her I was fine with what I do right now. I know to her it doesn't seem like I do alot but to me it does.

What I do varies from day to day. It depends on how I'm feeling that particular day. I tried to explain to her that's why I don't make plans for Thursday on Monday or Tuesday. Or even Wednesday!

I don't think she gets it.....and I don't expect her to. But I do expect her to respect my judgment and my limitations. I know what I can and cannot do. And I don't need to hear "just try" or "just do it" or "take a chance".

:)

When I was still working outside the home, I didn't tell anyone, with the exception of DH And Mom..(of course, she told everyone and so did DH.:mad:) At work, they thought I had pulled a muscle/arthritis amd same with the DMV and friends.

I hardly ever discuss my illness/symptoms of MS anymore. I found that most really don't want to hear it, because #1, it scares them and #2, they feel helpless, since they can't do anything about it.

So, unless I'm having an attack and in the hospital or need their help, I just say "I'm good and how are you?" Which is what they hope and want to hear. And, thank heavens, most of the time, it's the truth.:)

I only tell my dh and my kids. I dont think anyone else would REALLY want to know. My one aunt will ask me how Im REALLY doing when she calls, so I'll tell her, but other than that, I keep my mouth shut.

Well, regardless of who wants to know or doesn't, who cares and who doesn't care, there are still times that I think broadcasting my symptoms can work against me. Especially the cognitive ones.

Yes, I agree on that one. Generally cognitive impairment is not shared; mostly because even if a detailed description of what that may mean were included, people still tend to jump to their own conclusions and/or create their own story-line. It is not commonly known that for the most part, intelligence remains pretty much intact; even though the expression of it may be slower or impaired.

When the brain goofs, I find that brushing it off as a symptom of 'mental-pause' (my gender and age fit), satisfies most people and is an easy, light hearted way to move past the incident.

When cognition is really bad, I keep conversations to a minimum and carefully proof read all emails and correspondence. It is also less stressful to stay away from friends and family as well as the public; and thus I don't go to work at times like that.
In short, the more severe it is, the more I hide it as much as possible.

Erika

YES YES YES, Erika, you were able to express it so much better than my attempts!

I do NOT have dementia. I'm not going to drive on the wrong side of the road, forget where I live, or walk down the street in my undies. I'm not a danger to myself or society (well, any more than the next person).

I don't "fake it" with my kids, they know the deal. But "out there"--I claim, "Oh, duh, brain cramp!" I laugh (on the outside) and go on as if nothing happened.

Even though I want the public to be aware of ALL of the possible symptoms and problems of MS, I don't necessarily want MY people to be making assumptions about my intelligence that aren't so.

Got it Blessings..:Bang-Head: :D

One of the strange cognitive things I have is to look right a something and not see it. I am searching for an object and it's right in front of me, but I look all over the immediate adjacent area (as on a sink counter) and cannot see it. This would usually be because there are other objects my brain is "cataloging", and misses the one I want. Sometimes I can only find it by slowing down deliberately, scanning each square inch of the are, and usually that way I can find it. When I belonged to an MS support group, this was one of the main neuro glitches people had. Very common.
It is not the same as seeing the object as something it isn't. It just is not there.

I understand those who don't want others to know about this. In the long run it will harm us to have some people know this. They will ultimately use it as an excuse to put us in a "home", if we live so long that a "home" is usual. I am afraid of this, because I don't like the food in assisted living places. They are not the Swank diet I am on and they would do the Swank very badly. I have been in a rehab twice due to injury, and they could NOT get my concepts on food at the first one, which was moderately priced: when I said I avoided soy, they refused to bring any bread which MIGHT have soy, even as a trace on a pan that baked the bread, so I was starving and losing weight, as the food was not very nutritious and I needed to eat all that was available, unlike at home. My soy problem was not an allergy, it's a sensitivity problem with Porphyria, which means a tiny amount would not overstress the Porphyrin system in my body, but no one came to discuss this. Then, at the other rehab I was in, it was a very expensive one, and covered by Medicare this time (or else I couldn't have been there) and at this place I COULD get my food needs pretty well addressed, good enough so I could live there. But Medicare does NOT cover long term care, and of course I couldn't have gotten LTC when younger due to my dx. I can't afford a good place.