Just a little more denial
 

On another board where I spend time, there is a separate forum for those with PPMS and SPMS. I very rarely go there, maybe once every three or four months, even though there is much information that would be helpful and/or interesting to me.

Why?

Well, one reason is that I just don't have the time or energy to read every thread on every board. I haven't even plumbed the depths of all the forums here yet, can you believe it?

But I think the main reason is denial. Am I Secondary Progressive yet? Is it just a matter of time?

I think my defense mechanism is, "the progressive forum is not about me, so no point going there." If I see something "those people" are talking about that sounds familiar, I might have to be realistic. Ha. Fat chance of THAT happening.

The wonders a vile of denial can do for us. LOL.

Don't worry, I get that way too. If I am in denial mode, I don't even read threads that pertain to symptoms or anything MS related.

I have been told that I need to learn to cope with my denial as I tend to blame symptoms on everything else but MS; only to learn that it is MS related.

Passing the vile of denial to the next person.

I'll take a sip.....:rolleyes:

When I'm feeling vulnerable I tend to avoid posts that bring my symptoms to my attention. Some days I just don't want to deal with it. But....with MS we're always assured that those symptoms will be there tomorrow - or at least come back at some point in time - so I can deal with it then (maybe ;) )

I have yet to understand why we have to accept this or even what acceptance is. Why do so many put so much into acceptance. I look at it this way - The neuro states I have MS. The MRI backs him up. Ok - treat me! Give me meds to make my sx better; give me meds to try to stop this from getting worse or try your best. That is all I have to do.

I don't look at more progressive boards. I don't need to hear it. Not now and I hope never. Treatments are getting better. Will they be in time for me? My fear is not, but I try not to go there. What if I am wrong and they find a cure or a really good drug for me --- all I will have done is scare myself, and worried my self more, if I look at where this crap could have taken me.

I know from general talk, the net, my neuro... I may end up in a w/c. While I am ok in this area now I may later not be. I needed one with my 1st exacerbation and did not have one. Yesterday I called and put it into motion to get one while I have ins to cover it. That is just good planning imo. Not acceptance. When I get the final ins ok, it will be delivered and not unboxed. If the time comes when I need it, I will call and get someone here to unbox, teach me...

While I try to make intelligent decisions; I follow the last piece of advice my mother gave me. I was am and was in a bad child custody situation. In 2006, I gave up almost all 2007 vac rights to my child so I could have her in 2006. Mother said "worry about next Christmas... when it gets here. Things may change." They did and I had more than my rights in 2007.

This decision was unsure and so is MS. I will not worry about it till it gets here. Most others will disagree, but this is my right, and how I feel.

Sometimes I wish I could do denial. Seems I prefer/need to be hit in the face with all the what-ifs and only then can I rest a bit. :(

Dear BTU,
 

When I was dx as RR, the neuro did say it was very active and progressive. Which is why he wanted to start me on Beteseron, because it was the only shot that might help the more progressive form. So my dx was RR, but like you, am I really Seondary Progressive? I try not to think about it alot, and think would I be doing anything differently if I knew that... So I guess I would rather be in denial, as well.

But, since you brought it up :wink: can you tell me some of the symptoms and things that are occurring that gives you that intuition that maybe you have crossed over?

Thanks so much!!!:hug:

Sheena,
 

What is so great about NT, is that we get to hear so many different perspectives. We are all as different with the ms, and we all respond in a variety of ways. It's our coping skills. We all do what we need to in order to survive the horrible card we have been dealt. :)

I'm a little different than you. I like to know all the possibilities, because I hate surprises. So I do try to educate myself to some degree, without going overboard. But I am able to do that without letting it worry me a great deal. I am somewhat of a realist. Oh sure, I have my moments when it all gets to me.... especially during an flair up. But mostly, I just deal with the moment, but be aware of the possibilities.

I think your way is right for you. That is what is so great about these boards. We can learn from one another. I'm really just thinking out loud. You just made me think how we all really do cope in such different ways. :hug:

I don't know if I'm in denial or I just ignore it...

I went to a neuro last week - first time in 5 years. The trip wasn't for MS - I'm having nerve pain in my leg. I had to tell him I have MS and, to avoid a hassle with him, I took radiologist's reports from 1989 and 2003 that said MS. He had me do a few things (walk, stand on 1 foot, jump, etc) and said for someone that's had MS for 20 years I'm doing pretty good. I told him I just went into an exacerbation. I think I shook him up.

He told me it might go progressive some day. Duh... The nerve pain in my leg? Well, might be due to MS. More testing next week.

Tom

Hi Tom,
I should know this but I'm guessing that since you aren't seeing a neuro you declined to do the DMDs?

I hope they figure out what is bothering your leg.

I have a friend who isn't interested in learning about MS and I think that is unfortunate. She thinks a cure is just around the corner, that Beta will work wonders, they will come up with an oral med (I could give a rip, I'd just like one that works better) and that she may not even have MS after all. :(

My biggest issue with denial is that I worry it will stop people from preparing for the what-ifs. For example the financial aspects, housing accomodations and finally the prospect of long term care, that might need to be made in the future. It would seem to me that considering these issues while you feel good and can make adjustments easily would be prudent. Course I'm the one that immediately after diagnosis went back to college for a degree that would offer me job flexibility for when/if the time should come. :o

Ya' know, B2, it sounds less like denial than refusal to me. That's not all bad in my book. My attitude is that the MS is going to do whatever it's going to do— but so am I.

I'm SP non-remitting now and that's just how it is. To spend too much time thinking or talking about it would surely send me into a downward spiral. It's not denial in my book, it's just kind of, "What ever. I have things to do." I don't immerse myself in MS research too much because, frankly, it bores me. There are so many better things to consume my time! ;) Like stalking!

I am not sure if my mode is denial, acceptance but not giving in, going on with life, learning but living... they all seem to cross-over on one another.

There are times you can't deny this disease... like when you have a new symptom and you have to learn to deal with it, or when you are in the middle of a flare. Other times, when you are just in the midst of life, what is wrong with forgetting about this disease? I mean, is that really denial? Do people with HIV think about it everyday, or do they just deal with it when they have to.

I am thinking about dealing with it when I have to. Otherwise, there are so many questions that can get your feathers up that you may neve rhave to worry about...

Planning, yes, planning is good. Having provisions set up is good. Kinda like when you plan a cookout, you have to have provisions for bad weather. Well, make the provisions, but plan on the cookout...

I see that as life, not denial... but, what do I know. I am not sure what I know, feel, or think right now.

I agree with aftermynap... what ever... just live....

But can you ever go a whole day without thinking about MS? I can't, I don't dwell on it as much as years ago and I'm also of the "life must go on" mindset but it is in my thoughts every single day.

I guess that is a very personal issue. It depends on how you deal with and dwell on things. I can't go, right now, a day without thinking about MS, but I am in research mode and it is very new to me... in a way. When my dad died, I thought there would never come a day that I didn't think of him being gone. Well, there are plenty of days that I don't think of the fact that he is not here with me.

I had gastric bypass. I thought, because of the lifestyle changes it has on my life, that I would never go a day without that being in my mind... that I had surgery to re-route my insides to lose weight. There are plenty of days that I don't think about that.

I try and live in the here and now. I admit everyone can do that differently, and am not trying to put down anyone with their way of dealing with life. Right now, in the moment... MS doesn't need to be the highlight of my life, so I push it back. Eventually, it will drop off my radar until it needs to be there. But, that is how *I* am.

*THIS* is a reason I am big on not being labeled... and why it took me 8 years to allow myself to get this label. Once you have it, if it is on the forethought of your brain, then it is going to affect you in some manner.

My daughter came to me with 3 labels that was placed on her before she was 9. She had the labels of ADHD, bi-polar disorder, and mental retardation. She was on 3 heavy duty medications. I took her off of every one... and have not had ONE issue with her that could not be handled with proper discipline and higher expectations. I did not continue to label this child, because before she came to us, she lived up to her labels, because they were expected and used to dismiss her behaviors. Now, she has no label to fall back on. She is an A-B student (she is in main-stream classes, although not in the grade children her age are in), whose behaviors have pretty much gone away. The only behavior left is she is very talkative (can't imagine who she gets that from :Talkative: ).

I don't want to live with a label. I can live with a disease, and deal with it when I have to, but living with the label means thinking about it every day, and living up to everything is says (oh my, am I tired, is it from my MS - no, it is because I have worked 80 hours this week, my leg hurts, is it my MS - no, it is cause I ran 3 miles instead of 1 yesterday...ext)

Do I make sense?

I do want to make one thing clear. I am not trying to put down ANYone with this post... we all deal with things our way, and to each his own... this is just my way ;)

Nope. I have to think about it every day, but it's just part of the day to me. I have to think about putting my glasses on to drive, wiping my backside in the bathroom, and opening my mail too. It's just one more part of my life.:)

Jules - I don't have a choice but to think about it every day. I may not think about symptoms or how I got this or anything like that but I do think about it when I have to take my meds or do my shot. It has become everyday routine kind of like brushing my teeth.

However, I think of it in a more positive way than negative. When I take my shot, I kick back on my bed and meditate and think of how this med is preventing MS from getting uglier. That too has become routine for me.

Denial can be both a friend and a foe. I think Tom was right by using the word "ignore." I ignore it most of the time and just keep going.

No DMD's. We came to our own conclusions back in the early 90's during the trials.

Tom

Me too, but I thought I wasn't in denial, guess I was. Need a wheelchair now, called insurance, a wheelchair person came and measured me to have custom chair made, will take awhile! Had Canadian crutches, walker ready before need but as DH says, he's been telling me for a year, get a wheelchair. Luckily I could afford a break-down less expensive travel power chair and can use it in house until I get the other. Like to think I'm ready for anything, but I wasn't. But like going to AA, I can say "Hi, I'm Kicker and I'm PP." But I needed a wheelchair sooner, not later.

I'd like to think I'm ready for anything, too, Kicker..But that was true even before the MS dx..On my last MRI a couple weeks ago, they found new lesions, and my neuro suggested the possibility of trying Tysabri. I haven't really decided what I'm going to do yet. The physical sx are bothersome, but it's the way it affects my thinking that bothers me the most. If Ty can help with that, I might go for it.
I drove my daughter to the store today, and as I was waiting in the car for her I was watching all the people go by and thinking every single one of them has something in their lives they see as devastating, or frightening, or depressing, or painfull...It's all relative. Realizing this was kind of comforting, in a way. We really are all in this together..

In my case without more protein in the spinal fluid my Neuro couldn't make an official diagnosis but she said most likely Primary Progressive.

Do I think about it? Every day when I am having tremors and the rest of the stuff that goes with it. Do I worry about it? Nope!

I do worry about:

My family, terrorists, the economy, did I turn the curling iron off, did I remember to lock the doors when I left, and what on earth did I eat to gain 5 lbs this week!!???

PPMS; in my case it stands for pretty pathetic minor symptoms and I don't have time for petty stuff!

When someone gives me the "oh how sad" look I just say at least I am not pregnant!!