Limbo Land and Denial.

[MonkeyMom4]

Curious if any other people do this as well.

The other week my kids wanted to go to the zoo. My hubby was home and we were all going to go together. (I've only gone one other time with them earlier in the year when it was so freakin hot).  I was hesitant, because I knew I'd pay the price later. However, I talked myself into going by saying "I'm only 32, I should be able to take my kids to the zoo and have it not be such a big deal.'  So I go with the mentality of "I'm ok, I can do this, no problem'.  After about 15 minutes I was completely exhausted. I just wanted to sit down and cry I hurt so bad. I continued on though, with a smile on my face, for my kids' sake.

By the time we got to the car (Jeep) I could barely get in it my body hurt so bad. My legs must have weighed a good 200 lbs each and  I had to physically lift my legs up with my weak arms just to get them into the car. After letting the ac run a little bit I was able to drive the less than the mile home. When I got inside I passed out on the bed for a few hours. It took several hours to recover from my zoo outing.

My question is this: Does anyone out there try to convince themselves that there's nothing wrong with them?


I absolutley know with out a doubt that something is going on with my body, not sure what, but something.

[figuerpa]

I use to try to convince myself that there is nothing wrong with me, but then I came to realize that I am not able to do the things I once did. I learned to look out for my health and put that first.

My son wants to go to the zoo but I told him to wait till end of September or early October when it is cooler and told him that I would have to rent one of their wheelchairs for the day, because I know I would never make it around the zoo on my own and why make myself suffer when I don't need to.

I know it is hard to admit you can't do what you once were able to but why make yourself suffer in the meantime by over exerting yourself.

Are you seeing a doctor about your symptoms? I have not been diagnosed yet either. Neuro says he is pretty sure it is MS, which was a big step for him cause I have been seeing him for 2 years and he kept telling me that it wasn't MS. Waiting for my LP results.

Good luck
Paula

[MonkeyMom4]

Thanks Paula.

Yep, I'm currently seeing a neuro. I have my second appt. on Aug 31st. He listed off a number of things it could be, starting with ms. I think I'm currently on the ruling out process. Hopefully I'll have some answers soon but I do realize it takes awhile.

I've had small symptoms here and there for the past 4-5 years, so I just saw a neuro for the first time in April (2010)....but I seem to live in denial a lil too much b/c I don't want there to be anything wrong with me. I just keep thinking mind over matter...and then I end up paying for that way of thinking. It ***** to say the least.

I'm happy that your neuro is finally listening...that is a big step.  

[Quixotic1]

Absitively, Posolutely, we all do this.  Sure that we can just do this one easy thing, most of us have landed on our faces.  It takes a long time for our symptoms to become a part of our overall picture of ourselves.  Heck, I'm sure I am still in my forties.  How in the world can the 6-OH be looming so large?  I think it is human nature.

HOWEVER, you have now had TWO examples of what the heat - and possibly over-exertion - can do.  The heat is actually dangerous for us.  there is always the possibility that some of the symptoms we suffer in getting overheated, can become PERMANENT.  Yes, that possibility is why they no longer do the Hot Bath Test as part of the work up for MS.  After a patient became permanently paralyzed - and the MRIs were now available - the doctors decided the risk was too great.

Also, we need to realize that when overheated our cognitive process is likely slowed, too.  We shouldn't be driving with kids in the car or not.  Our reflexes are slowed just like our movments.

Now, while it is still freh in your mind, you need to let your neurologist know that this happened.  Don't talk about heat tolerance, just describe what happened and tell him you are still feeling weak from the incident and are very concerned.  If he is a thinker - and it sounds like he is - he will realize that your Hot Bath Test (tho inadvertent) is positive and needs to be put into the equation.  We have had a couple members who did this and it helped.

Befre MS was even on my radar (I was 53 and and had suddenly lost the strength in my right leg a few months earlier) I was taking walks to increase my stamina.  I walked too far on a hot day and suddenly got weak.  I collapsed a few houses from mine in the street, in tears.  It was completely frightening.  A neighbor had to help me home.  I didn't understand what had happened at all.  I didn't call my neuro, because he had made it clear that he thought I was faking everything.  Not understanding that it was the heat, I just stopped walking.

Use what happened to learn more about yourself and to educate your doctor about it.

Quix

[Inny2009]

Monkey Mom,

         I am in denial from the moment I wake up to the moment I go to bed. I posted alittle bit ago that I went to the fair because and my exact words were yours...There is no reason a 22 year old woman should not be able to take her son to his first fair and see him ride some rides for the first time. Yea..and like you...i was falling over in the first 10 minutes of our time there.

To me..to admit I cant do something..especially when it comes to my son...i have pure hatred about myself (i need to work on that). I feel like such a bad mother if i dont go and dont share those experiences with him or allow him to get those experiences. When I found out I was pregnant I thought, I will never ever let my child suffer just because I am sick.

Ok...well...hmm..thats harder said than done apparently. But my husband brought up a good point. If I dont stop and take care of myself now, Im going to get worse..faster. And that will be less benefical in the long run. He said in the end our son will understand when he gets older and everything will be fine.

Perhaps from now on you can find ways to share experiences with your kids. Like take them to muesums where there is air conditioning...or indoor places with animals. If you go want to take them somewhere outside again like the zoo..perhaps get a cooling vest and a motorized wheel chair for these events (i say motorized because your arms are going fall off trying to wheel yourself around everywhere) and to make it less "weird" if your kids are young enough give them rides to make them break out into smile wheeling them around in circles and stuff..theyll get over that pretty quick.

Another thing you could do is make memories in your nice air conditioned house. You could do anything from play games to using your imagination (i dont know how old your kids are...im going to assume teens dont really appreciate a fake zoo lol but little ones do!) Not only does that give you memories, but it helps them use their imagination and spend some quality time with mom. And I gaurntee that in the end, they will remember how mom sang karokee with them in the living room and baked the largest cookie known to man one night or laid on blankets in the back yard at night and showed them the stars before they remember mom decided not to take them to the zoo anymore cause she didnt feel good.

Im thinking of you and am hoping your feeling alright. Your not alone and Im always here if you ever need anything.

Inny

[Inny2009]

let me just say..i reread my post and i realized there are spelling/grammer mistakes and i kind of went off on a random tangent about ways to spend time with your kids (please dont be offended..didnt mean anything rude by that) . Im sorry my brain is pretty foggy today. Ive had some stress the last two days. So im sorry...hope i didnt ruin your post thingy..answers part...and if i just wrote this part for no reason..sorry for that..oh nevermind..im just confused in general..ill get off now...lol

have a good night!

Inny

[MonkeyMom4]

Wow Inny, thank you soooo much. I'm in tears right now. I have 4 kids and my oldest is only 5. He starts school on the 18th.  We are all so excited! I thought I'd been hiding things pretty well when it comes to my kids and my husband (I truly think my husbands just thinks I'm really lazy...but that's a whole nother story). However, last week my oldest, Jackson, flashed this toy in my face and said: 'does this make you dizzy mom?'  I was speechless (it did in deed make me dizzy) but I truly thought I was hiding my symptoms pretty well.

Kids are sooooo much more observant than we give them credit for.

It's hard to explain to my kids what's wrong with me when even the docs are still trying to figure it out. I don't want to label myself as an 'MSer' if that isn't what's going on with my body. I just feel like I'm in my own little war with my body and I'm losing.


Right now my energy level is so low that it's even hard to get up, make a bottle, and feed my 4 month old. I get nervous carrying my baby to the changing pad or his crib.

Every now and then I'll get a small burst of energy and then we can have some fun. Today my 4 year old kept asking me to help her fold the laundry...I had to keep telling her we'll do it later. (My arms are pretty weak).  We did end up folding a few towels together. I just don't want my children to grow up any faster than they should.

One of my fave quotes:  'Your children only get one childhood'

Thanks again for all the comments everyone, your words help more than you know.

[Ufrustrated2]

>>My question is this: Does anyone out there try to convince themselves that there's nothing wrong with them?

yes indeed. i suspect many of us have been in that particular place & time. and i'll add ones' doctor can fuel this "denial" phase too via the often "too long in limboland" phase

when i have good days/weeks my denial comes back but a few attempts at exercising as i used to (and that wasn't that long ago) the denial gets displaced by reality.

[jujuminx]

Yes!  I try and convince self all the time.  It's the only way I am currently keeping my sanity. Unfortunately I live in same city as inlaws and they think illness is really mind over matter. Think positive and create positive energy and presto, you are cured.
Also have friends who just don't want me to have anything serious so they tell me to tell self that "it's nothing" and see a chiropractor.  My husband is great but it hurts when he offers so quickly to do things with kids without me. I realize that is my issue, not his but part of my denial I guess.

Julie

[Lulu54]

Inny, don't apologize at all.  What you did in your post is what we should do most of the time - we are presented with a problem (spending time w/kids at zoo = feeling bad) and then try to come up with a solution (alternative activities = museums, create own zoo, etc).  

With this disease we don't necessarily stop everything we want to do, we just learn to do it in a different way that will allow us to participate without paying the consequences later.

Monkeymom4- just the thought of 4 children under the age of 5 makes me tired  LOL


I am in awe of you women who can handle this tough job - I hope you will wisely pick what chores around your house are NECESSARY vs NICE.  It is nice to have a sparkliing clean floor, but only necessary when it reaches a certain level.

It is necessary to feed your children, but it is only nice to make everything from scratch.  Home made mac & cheese is great but the kids prefer the stuff out of a box, anyway!

I'm sure you get the idea- find the ways that you can do what is necessary in a way that conserves your energy so that later on you can pick what nice thinkgs you also want to do.

Quix is so right about the safety hazards of pushing ourselves too far - keep your precious children in mind as you pick the things you want to do.  Hang in there, autumn weather will be here soon as we'll all be freed from our A/C homes!
be well, Lulu