Figures, THIS would be the disease *I* get.
 

So, posting on another thread got me to thinking about a conversation I had with DH the other day. Of all the diseases for me to get, THIS would be the one.

The things I have always had a hard time with:

Poor planning, unplanned things.
Not being in control, having to rely on others.
Trust
Faith
Hope
MRIs

So, I get stuck with a disease where planning has now taken on a new meaning. I have to plan with conditions. There will come times where I can't follow through on plans. I feel like I will let others down. I have always been one you can count on.

Control... I dun did kiss that goodbye for the most part. I will control what I can when I can but realize I have to start giving some up sometimes.

I have to start relying on others to be there for me. I have to trust that they will be there. I am the caregiver, always have been. Heck, when I was in junior high, I was my friends therapist... They would call me all hours of the night if something was wrong. That is why I became a nurse. It scares me that when the time comes I may not be able to take care of my mom if needed. No one else in my family will.

Also, you can't rely on anything BUT hope and faith for this disease!! I mean, I am a Christian, but have still had trouble with hope and Faith, even though they are the biggest things in my "Faith," I have still always had trouble with them.

MRIs SUCK!!!! I am so claustrophobic. This last one, they gave me ativan for. I put on my big girl panties and was going to try it by myself, UNTIL they said I had to have the shield on my head... Oh heck no. I almost went into a panic attack right there, and I am not a panicky person. She told me to take the ativan THEN!! LOL

I guess we do have our paths mapped out for us. I guess bad things happen that enhance our learning experiences and, well, to some point our lives. We have to take the good with the bad, and use the bad as a growing experience.

When I am dun growing, will this be over?

Well, I had all but convinced myself I had a brain tumor before I got my dx of Multiple Sclerosis so......MS was my disease of "choice".

There is always something worse.......

I hear you regarding this. I'm slightly claustophobic and the MRI drives me batty. I've had a few of them take longer due to panic attacks.

I will say I've been learning more about myself lately due to this. Strange classroom, this MS.

Hang in there! :grouphug:

LMAO - sorry, I have strange sense of humor and when I read the some of your post it just made me laugh :o

Trouble planning, unplannned things and not being in control - MS kinda throws alot of things out the window. Control what you can and the rest, go with the flow. Pick and choose what's really important to you and leave the rest if your not up to it.

Trust - There are very few people I trust anymore.

Faith - *sigh* this disease never really brought up faith or spirituality for me. Although when my current neuro saw my cervical spine MRI he looked and acted a little freaked out when he realized I am still walking unaided. I realized a long ago the c-spine lesion are not good but his reaction made a large impact on me. As I was driving home the only thing that played over and over in my mind was - but for the Grace of God with tears rolling down my eyes - not the best thing when driving :eek:

Hope - for the most part I have hope. Hope for a cure of this disease so my children or their children do not have to experience what this disease can do. And, I hope to live my life with dignity inspite of this disease.

MRIs - I have almost fallen asleep during them :eek::p

I do believe our paths are mapped you but I also believe we have choices along the way that can change the outcome of our paths - good or bad but I am not impying we can change what happens to us medically. My life could have gone so many different ways. I have actually had a few friends and a therapist who were shocked my life has turned out as it has. I have no explanation other than guidance by a higher power.

Your posts say alot about you as a person and I think your going to do okay in you ability to deal with this disease. I suspect, in time, you will be one of those who offers support to others with MS. :hug:

Kitty: I hope I didn't come across as complaining!!! I am grateful things were not worse, are not worse. I realize everyday this just makes me grateful for life, cause there are those who get in an accident and become an invalid without the forthought or planning for it. Heck it can still happen to any of us. I didn't think I had anything wrong, so my choice was just that... nothing. I was SHOCKED when "The mri was normal" did not come from my neuro's mouth. I am sure, had I been in your position, I would have breathed a HUGE sigh of relief.

I was just saying, I can't believe it was this... that makes me face all the things I hate!! Kinda the way Snoopy took it!

A friend gave me a card after I told her about this. On the outside, it shows a cat throwing its head in the air, seemingly laughing, saying, "Stupid dog fell in the toilet. Bwahahahaha!!!" On the inside it says, "Take comfort that someone is having a worse day than you." It cracked me up. Kinda like figuring out this disease is making me face the things I hate.

FinLady: There was about 4 times I almost hit that panic button. I just took a few deep breaths and was able to make it through. One time I panicked is when everything went quiet. I thought, "OMG, I am STUCK IN HERE and THEY WENT TO LUNCH!!!!" LOL, like that would actually happen, but it was still a thought I had. Just about the time I talked myself into screaming, the MRI started making the noises again!!!

Snoopy!! I think you are right. Once again, I will turn this into a caretaking ability. I swear, I am not living if I am not helping someone. So, why have you lst trust in people. Have you found they have not been there for you? Ack, I hope that is not the case. I don't have many friends I do trust. If I lose them, I won't have anyone...LOL

Have a great day everyone!

I hear ya!
 

I hear ya on everything you said- and agree and feel the same way with almost all of it. (I don't have problems with MRI machines...I'm not claustrophobic, so it doesn't get to me.)

I was just talking about this with my therapist yesterday - we all live with a question mark over our heads - it's a fact of life - we don't know what might happen tomorrow, so to speak, but we deal with it - and just go thru life planning and doing.... But now, with MS, it's not just a question mark, it's a friggin time bomb, with an unknown timer on it....it's an awful way to live - and I admire the so many people before me who have been living with this for years and years. I'm new at this....just three months now, and have not figured out "how to do it".

I don't like planning things or committing to things now. There's always a caveat of - "I'm gonna try my best to come thru - but I can't guarantee it anymore." I HATE THAT!!

I also do not do the "dependence" thing well - having to rely on others, omg, shoot me now!! Worse than hate it - I DETEST it...it makes me feel so much worse. In January, I had no choice but to rely on others to do for me - I couldn't see other than double, the vertigo was insane (I felt like I needed a seatbelt while sitting on the sofa even!)...the dizziness, the fatigue...well, you know the whole gamut. I couldn't drive...and I live in a city where there is but no choice to driving....people in LA do not walk. LOL ;)

I was miserable, but I guess I was "too" sick to fight off taking the help - I had to take the help. Now that I'm a little better, I'm fighting it...but again, am limited in some things still (don't drive more than 20 minutes away from home, etc.).

I am also not one for faith. Blech. Where has that gotten me in life?

I'm told it takes a year or two of living with the disease to "adjust" to it....and possibly to come to terms with it. I just "hope" I can make it that long without going insane.

Sorry, didn't mean to hijack your post - just suddenly got very emotional about all of this again. :(

~Keri

Why have I lost trust? It's really not about losing it but about self-preservation. I am very upfront with the fact - I have PTSD triggered by a doctor in Dec. 2003 but complicated with a very dysfunctional childhood - And life goes on :rolleyes: :)

I started getting involved with MS forums in Dec. 2004. I felt I might be able to help others with MS and I needed something to take the focus off the PTSD and everything surrounding it. Trying to help others did that for me.

And, it sounds like helping others might be how you help yourself ;)

I can't imagine you losing your friends, they are lucky to have someone so caring in their life.

Like Snoopy's, my reaction to your post is itemized accordingly:



Poor planning, unplanned things.
Not being in control, having to rely on others.
Trust
Faith
Hope
MRIs

I have to plan with conditions. There will come times where I can't follow through on plans.

Find me any individual who can say that this is different in their own life and we'll talk about it.

Control... I will control what I can when I can but realize I have to start giving some up sometimes.

Again, I fail to see how MS makes this one so unique.

I have to start relying on others to be there for me. I have to trust that they will be there. I am the caregiver, always have been....It scares me that when the time comes I may not be able to take care of my mom if needed. No one else in my family will.

If you're over 40, this is normal, although, it does feel exaggerated at times. I'd like to know what your mom says about wanting to take care of you. This seems pretty common to me among most of the population, also.

Also, you can't rely on anything BUT hope and faith...

Absolutely 100% true, about every thing and every person.

ALL OF LIFE is a crapshoot, ours just has a name!

MRIs SUCK!!!! I am so claustrophobic.

I agree, but I'm also happy that MRIs are but a fraction of my life, I do survive them, and do resume my life after each one. I've had about 12 I think.

I guess we do have our paths mapped out for us.

Yes indeed, and we are also blessed/cursed with a free will. It's up to us how we choose to react to life's bumps and turns.

Keep the faith, BTF, I've been doing this for a lot of years, I still do everything I want to do, I just find the ways to do those things and sometimes the challenges are steep. I'm up to it.:)

Mri's and needles! :eek: If someone had told me I would some day be injecting myself into my thigh with a medication that would make me feel like I had the flu 3 days out of the week I would have told them they were NUTS!
And the extra medications I have to take. I am NOT a good medication taker. I decided if the meds don't kill me maybe they will make me feel better! :)
You really do have to talk to yourself and reason yourself through all of this. I am going on my 11th week with my MS dx and I think I am finally starting to deal with it........maybe. :rolleyes:

LA

oh shoot!!!!!!! :icon_exclaim: I wrote out this really long response and I accidentally deleted it. I hate it when I do that! So these will be short comments.

Beauty I hear you on the "why do *I* have to get this disease?" I joke that this is the worst thing for me given my difficulties with uncertainty in life, which has been a major theme for years. I've managed to weather the storm of my father's schizophrenia, his suicide when I was 17, abuse when I was a kid and all sorts of other traumatic stuff. But sometimes this just seems a little too much on top of everything else...just sitting around waiting for the other shoe to drop. Maybe this is the lesson I need to learn in life-- to try to live day by day--just be in the moment. To let go of the need to control. Vic had good advice last night: "MS has to be like accepting the fact that gravity exists. It just IS." I also like what Cindy has to say "ALL OF LIFE is a crapshoot, ours just has a name!" The key is for each of us personally to figure out what our own strategy is for learning to be comfortable with the crapshoot.

Like Keri, though, I'm not one for faith either. But I do feel strongly about the notion of "mindfulness." My goal is to learn how to sit with the uncertainty and fear of of the MS, watching it but not feeding it. By just being with the feelings or accepting that they just ARE I can release myself of the anxieties. It's a day to day process.

http://i12.photobucket.com/albums/a2...ess_44/mri.gif

:D

Cherie

Ah - you get it!! NO hijack... Besides, I don't mind hijacks!!

My faith... In God has always been ok, it is my faith in general. It is hard for me to have faith in anyone - I guess it boils down more to trust than to faith!!

Thanks for your story! Glad to see I am not the only one who feels this way with some of these struggles.

Sorry about the PTSD issues. I guess my life, in general has been pretty calm, which is why this is a bigger deal to me than others I suppose!! When you deal with other things, this seems minute in comparison!! Glad you have found your nitch to helping you feel better!

I have always been a commital person. If I commit, I follow through, no matter what it cost me. In my job as an addiction nurse, I am on call, literally, 24 hours a day 7 days a week to my patients. If I am not there, it can cause their world to spiral out of control, because in their world they don't usually have anyone they can count on.

For true friends, I have always gone above and beyond the call of duty. In my one friendship of 8 years, there has literally been one time I was not there when I said I would be, but, really and truley it was my husbands fault I could not follow through because he was called into work at the last minute. I pride myself on my follow through. Now, there may be caveats along the way. Yes, I can make this adjustment, I have to. Now, I have to learn to put myself first, which is something I have never really done. Yes, not a good way to live, but has always been my way.

I'll keep the faith, and I am glad to know that my crapshoot has a name, and that I can adjust my life accordingly. I would prefer that than to not know what is going on and having all these things happening, and not know how to plan.

Most of my post was tongue in cheek. I just found humor in the fact that of everything that could happen, the one chosen is one that forces me to face all the (small insignificant) things that I hate :eek:

Ack, I hate when that happens also!! Sorry for all you have gone through. As I said in another post, I have had a pretty calm life. I guess that has given me the ability to have the personality I have, which is rely on my self, and allow others to do so, cause I can't rely on others... I know, that sounds off the wall. I don't know where my distrust in the human race came from... I am one of those who waits for the other shoe to drop also, and like you said - by living in the now (which is what I am learning to do) I find I don't care if the other shoe drops, cause I am finding out I am strong enough to pick it up, pair them off, and put them (the shoes) back on! I am sure you are just as strong!

I think each of us have had to find new coping mechanisms to manage this disease.

I come from the opposite situation as you in that I had a difficult childhood, and spent most of my young adult years trying to figure out how to "control" my life so that I didn't have to live in chaos any more . . . you know, the ultimate perfectionist. :rolleyes:

My big challenge when the MS came on was realizing I can't control everything. That forced me re-evaluate everything that I thought was important to me, then try to incorporate these new revelations into my life.

It's never easy, no matter what our history.:mad:

Cherie

Yes, I am definitely strong given all the stuff I've made it through. I just thought the universe finally owed me a break!! I mean really......ya know? Like I said in another post this was rough for me because 1) it came out of nowhere and was a shocking surprise 2) I had only been married 3 months--nice wedding present, huh? 3) my career is taking off finally after years of hard work 4) and I was about to turn 40. Anyhow, all the stuff I have survived has always made me tough and I've had to rely on myself. But you are right that with the MS we will have to allow ourselves to ask for help if we need it.

Poor planning, unplanned things.
- In a lot of ways, living with my wife has been good training for this. She's one of those people who never plans for the weekend till Friday. That used to drive me nuts, but now that I have MS and we've started foster care for sick kids...Friday often seems to early to get a real picture of what the weekend will be like.:o

Not being in control, having to rely on others.
- I hate hate hate this.

Trust
- At this point I don't really remember what trust feels like. It wasn't always so, but now it's just kind of like I've learned contingency planning for when I'm let down.

Faith & Hope
-These used to be my strong suit...now it all depends on the day. I have to say that looking at my daughters huge smile and listening to her 2 year old giggle...there's certainly enough beauty in this world to give me a little boost in my spirits.

MRIs
-Can't help it, I like em. I fell asleep on Tues in my last one with a brief moment of waking for the contrast. The time before, the mirror was set up so I could see a clock. I amuzed myself by trying to close my eyes for exactly a min. The closest I came was 58 seconds. It's harder than you would think. I had more success going for 30 seconds where I was able to get with in one second a few times...In any event, any games to keep the mind occuppied while you have to sit there. I kind of view it like time I spend mowing the lawn. It's time where I can shut down the mind, and I'm almost guaranteed to meet expectations. Those times where I'm almost certain to meet expectations are times I treasure.

We had a mens' with MS meeting a while ago in MD, and one of the things I took away from the group was "you own this disease when you can make fun of it." Seriously, MS is one of those diseases that frequently makes us act in ways mideval court jesters would be proud of. The only advice I have from my 18 months with MS is "own it to the extent you can." It sounds like you've already got a pretty good sense of humor about it.

We are most definitely on the same page with all this. We follow-through types have the inner resources and raw determination to stick with something until it's finished to our satisfaction (as if that's possible). We have to draw on that inner strength more often and with more ferocity than ever before when we factor in the MS. And, we just do it.:)

I'm a "planner". I don't like to be surprised by the unexpected (unless it's a windfall of money).

Having MS has made it difficult at best to plan anything. I still do, though, and my pre-MS organizational skills have come in very handy.

All we can do is plan, hope for the best but prepare for the worst. That's true in anybody's life - whether you have MS (or any disease) or not.

The first Neurologist I saw (the one who dx me) told me the day I got my dx "life is what happens while you're making plans". I was expecting a much worse dx than the one I got...so I was relieved when he said "MS". I smiled and said thank you - he told me that was the first time anyone had thanked him for a dx of anything!!

I look at MS as a challenge (I love a good challenge) and try to begin each day with the determination to overcome just one obstacle MS throws my way. I set the bar low but my expectations high. It's all about adjusting.

I love the quote!!! I also love the challenge part, cause that is how I am. I LOVE challenges. Matter of fact, my mom, who is 1200 miles away, is worried I am pushing myself to hard. I told her I am not diferent today than I was 3 years ago. I will push until I fall, or can't push any more. Even more so now I guess. I have more to prve to myself, and to others now. I want to do the things the naysayers say I can't or shouldn't. That is how to get me to do something. Tell me I can't!

Amen and amen!

I totally agree - I'll do something I'm told I can't do just to prove that I CAN!! I think you'll do just fine with MS - you have a good attitude and the determination to "keep on keepin' on" - and that's all anybody can really do. :)

I wouldn't dare tell you that, and you have a great attitude!!

HOWEVER . . . you do need to learn to pace yourself. Not doing so will be to your detriment. :cool:

Keep the attitude, but adjust your physical expectations of yourself at the same time. Everything in moderation . . . :hug:

Cherie

Beauty,
 

I was/am SO LIKE YOU ARE SAYING about yourself. But, also, listen to Cheri. For me, her point was well taken a few weeks back. I have ALWAYS bulldozed my through everything, for the past several years, before I new I had something that needed to be dx'd. I literally about killed myself. This has been quite an adjustment for me.

I have not, and will not, just cower down to this MS. But I have had to become realistic. Because, for me, I had to admit that it is not going away. But it is also not going to be the death of me.

You have such a great attitude and I'm not sure what where in the disease you are. So I don't want to sound negative. But, just to say, along the way... BE KIND TO YOURSELF... REPRIORITIZE WHEN AND WHERE YOU NEED TO... and STILL you can be the one to rise victorious over the MS. You sound like a great, :Bow:strong lady.... you definitely will not let it get the best of you.... But don't let YOU get the best of you, either!!! Just make gentle adjustments as needed! :trampoline:

I hope this helps, I wouldn't want to come off negatively for you. Take care of your self! :hug: You have a lot of wise folks here at NT to help! :grouphug:

If it would help, the following address is to the "Crumbling" thread I posted, that I got a lot of help on from Cheri and a lot of other wonderful people here.

http://neurotalk.psychcentral.com/sh...ight=crumbling

Here Kitty, I have to laugh...
 

"...MS WAS MY DISEASE OF CHOICE..." Boy, oh boy, I didn't even realize until now, how I was also able to talk myself into being okay with MS, as my disease of choice... I can so relate!!! That is just too true to NOT be funny! :wink:

:) I know...it sounds crazy but when you have researched your symptoms and it all points to a brain tumor you're thankful for anything BUT that dx!! :D