Denial vs Hope vs Reality

[drgnlny]

Ok - as I've said in previous posts...I was in serious denial about MS until things really went haywire.

Basically, when I could no longer take care of myself properly, let alone work anymore, I had no choice but to face it.

Which is interesting because the laundry list of problems were bad enough before and they did stop me for a day or even a few...but I would always recover and return back to a fairly normal, productive life.

Yes, I was upset I couldn't ski anymore (right when I'd finally been able to afford to buy my own, nice fitting skis & boots), that I had to give up my newly gotten motorcycle, that I couldn't dance several times a month like before, that I couldn't handle going to the fair, even for a couple hours and etc. etc. etc.

There were many things I was angry and pissy about but they were all things that didn't stop the bulk of my main life (my job, my responsibilites, my family, etc.)

I know I was mentally struggling with the losses I faced and the days I was down and out (literally in bed) and it did create issues in my relationship and my own mental/emotional well being. But as long as I could keep 'doing' things - I thought I was 'dealing' with it!

But alas, that was just my life long stubborn way of bearing down and barging forward when things got tough. I would bulldoze through it all. That's how I survived all my previous traumas and tragedies and hardships. And I've had quite a few for my lifetime...yet NONE of them compare to MS!! I never would have thought.

Now I can't bulldoze forward, I can't dig in my heels and push harder...I did that all up until recently when all my survival tactics failed. Literally, as if someone pulled my plus and I dropped. This is my reality and has been going on two years!! Yet....my head keeps telling me I 'should' be able to keep going! And I get really angry/frustrated when I can't (and scared).

I am still very blessed in many ways but there are so many moments where I just hate my 'ms' life...

because of how awful and sick I physically am and feel every day
because of all that I can no longer do
because of all that I have lost (and am still in the process of losing)
because of all my family and friends I can't keep up with or spend time with
because of all the things I wanted to do with my daughter, with my boyfriend and with my life.

It's like everywhere I look there's just remiments of what 'use to be' and the person I was before. And open wounds of recent losses that I'm still struggling to accept.

I want to scream and fight and say 'NO! - Enough! I'm not giving up one more single molocule of my life or myself to MS!!!'

But it doesn't matter how stubborn I am, how much I pray, how positive I think or how loud I yell...usually in my head since I don't have that kind of energy to waste ~...it doesn't change what already is.

Why is it so darn hard to just accept this is my life now?!?

Wishing hard enough isn't going to produce any miracles, yet there is still this child in me that hopes maybe...just maybe...magic is still possible. And if it is - THIS is the time for it to happen! (Just this once, pretty pleeeease!!)

But it's like believing in Santa...as much as I want to still believe, like I did as a kid when anything was possible, I just can't. I can play along but deep down, the truth is there and I know it.

And I go through this cycle with MS and my life because of MS. I think I'll just deny it and bulldoze forward - but I can't, so then I want to bargain and beg and hope for magic and miracles but that doesn't work so then reality bleeds in and I freak out and get really upset...

You'd think I'd know better by now! But no, I still go through all these emotions over and over.

I think one thing that is so hard about MS is that for many of us it's ever changing and progressing. So once you finally get use to the idea of a new way of life (or new plateau as I call them) and you've gone through all the processes of grieving, being angry, begging and finally accepting (at least somewhat) and if nothing else, at lease figuring out how to live with it - something ELSE happens or changes and you start the whole thing all over again!

You never really get to feel settled or grounded - except when you've fallen and you can't get up. Which, I'm starting to understand, is about as 'grounded' as I might ever be when it comes to this MS crap! So perhaps I should do myself a favor and invest in some tush padding to cushion the falls and make my time on my arse a bit more comfy!

[palmtree]

You write so well! I wouldn't add a word to what you've said.

[quotefanatic]

I'm very sorry for what you have gone through and are going through...

It's difficult and frustrating having a disease where you have little control over your own body - and trying to deal with the day to day.

Make some new years resolutions, set goals for yourself..

But start out small, you know? And build. (Don't try and do something big first thing.) Your life isn't over because you have MS, it's simply that you must accept and adapt..

What I'm trying to say is adapt, but don't give up.

Once again, so sorry for what you are dealing with, and I wish you the best.

[quotefanatic]

Also, if you are feeling very overwhelmed I would advise to call your doctor or seek help.

Depression is serious, (not saying you are depressed.) But if you do feel depressed, I beg of you to talk to your doctor or a counselor.

There are people that care.

Best wishes to you!

[BigA]

You write so well! I wouldn't add a word to what you've said.

I agree. I wanted to say the same thing. It's always a pleasure to read good writing.

So you still have your mind and a sense of humor!

I hope you feel better.

BigA

[AnneLouise]

At first, I was in serious denial. Now, I'm just angry. Angry with whom? I don't know. I don't know where to direct this anger. But it's there.

I miss the person I was. I know I'm not alone, but I feel I am. All the things I identified with. All the things I thought were me. I tell myself I need to re-invent myself. But how? I can barely walk and keep my balance.

But, it's the anger that beats me up. I find it difficult to get past it. Just when I got through the child-rearing and past the college tuition, I thought I would enjoy my "empty nest" and the "golden years" of my life. I think that's what the problem is. I feel robbed, cheated, in the prime of my life! Someone had posted that this was "nonsense". Yeah, I agree.

Thankfully, my sense of humor gets me through. I know there is a reason for this, and so on. But, good grief. This is the hardest thing I ever had to do.

[MSW1963]

Drgnlny, I have to agree, you wrote exactly what I have been struggling to articulate. My dx came 10yrs ago and I'm slowly overcoming the anger.

I had recently adopted a new born baby daughter when I started getting sick full time. After almost 7yrs of the hysterical female noise from docs, I had a breakdown, just broken and sick with no clue where to turn. Not long after that I was dx.

All the dreams of a prosperous life I thought I had to offer my baby girl, just gone.

[drgnlny]

I think sometimes you just have to let the crap out!

And I know this is the place where people 'get it' - venting, being honest about what's going on inside of me emotionally and mentally.

I don't sit around and wallow in these negative feelings all the time...but they ARE there and there ARE times when I have to say them or they will eat me alive.

I very much appreciate being able to do so here. =)

I'm happy that my words touched some...NOT because you are feeling like me (what a ***** thing to be 'happy' about) but because there have been many times when I, too, had soooo many emotions swirling around that I just could not articulate - even to myself!! Then I would come here and read someone's post and it's like what you said - it felt like they just pulled it right out from within me!!!

And it just felt good...to flush it out, cry and know that as alone as it 'feels' in my day to day life - there are so many others going through the same thing and surviving! Even thriving!! It helps in a big way.

So I'm glad that once in awhile I can reach out to others and let them know 'we' are in this together....and it's totally ok to be angry and pissy about it sometimes!!!

I want to share that I've been doing a lot better mentally/emotionally with things in recent months. A far cry from where I was for a long time...

I still have my moments (as above!) but even when venting and discussing candidly some of my 'forbidden' thoughts and feelings about it all - I know I'm 'ok' in the ways that truly count.

I know that even when I don't feel like it or even know it....I AM stronger than this messed up disease!! Maybe my body can't do what it use to and I will mourn those things and miss them...but apparently it's time for me to learn a 'new way of living'.

And when my stubborn self isn't pissed off about that being decided without my vote...I honestly see it as a challenge for me to discover a new me, an adventure of sorts and a chance to become a stronger person - not a bulldozer but someone who moves along with the flow of life...(I should tattoo this on my forhead to remind me of this on my rebellious 'no, no, NO!' days!)

Thankfully, my fiesty, dark sense of humor is still in tact (most of the time) and I could just look at it this way - MS gives me a ****-load more 'material' to work with!

Thank you for the kind words about my writing...it is my salvation. I can't begin to verbalize all of this - I confuse myself and everyone else when I try! But I can write it out and once it's out of me, the power it holds seems to be a whole lot less than when it was bottled up inside.

It's kind of like uncorking a bottle of champaign - it just spews out with such force! Fizzing and foaming all over the place! But after it's run it's course...there's the calm, quiet flow...'aaaaahhh'... and i can breath again, ready for whatever is next.

[Windwalker]

I hope the new year brings a higher level of acceptance and understanding of the "new you". Things that are currently unresolved will get resolved...focus on what is important.

[BeneathTheLies]

Thank you drgnlny! After this weekend, this is exactly what I needed to read.

[Bob698]

At first, I was in serious denial. Now, I'm just angry.

Don't forget scared.
I think we all go thru this, its pretty normal.
After a while, I think we get bored with The Seven Stages and figure out how to deal.
Many people will tell you to seek a higher power so you can find peace and reduce stress. What ever that higher power might be is up to you, I've found good results listening to Neil Young's 1955 Gibson Les Paul with the three factory installed pick ups-but that's just me.

Just be careful with the anger stuff. Make sure you have it aimed in the right direction.

[oncewasKeKe]

Totally Agree

I must say I agree with you. People kept calling and sayng Happy New Year. What's happy about another year of pain and unanswered questions. The thing that gets to me is when people who have no clue of what you feeling; tells you to stay POSITIVE! Well let's see them try to stay positive when they can't tie their shoes. Or how about being in the bed for days because it hurts just to walk to the bathroom that's only 10 steps away.

The Reality is I can't go places alone
The Reality is I can't walk without crutches/walker
The Reality is I hate DEPENDS!
The Reality is THIS SUCKS!

[Thinkimjob]

The hardest thing to deal with is knowing MS never stops.

You recover, more or increasingly less, from every episode, do your best to carry on as before, adjust to the new you, convince yourself it's OK, and then the next round arrives.

I don't let myself hope for a cure, I understand it's a life sentence, I know there are plenty of crappy diseases, but I just wish that was it.

I can deal with the way things are, right now, physically. It's not good, but I could live with it.

But I know there's more to come.

[tellnhelen]

I must say I agree with you. People kept calling and sayng Happy New Year. What's happy about another year of pain and unanswered questions. The thing that gets to me is when people who have no clue of what you feeling; tells you to stay POSITIVE! Well let's see them try to stay positive when they can't tie their shoes. Or how about being in the bed for days because it hurts just to walk to the bathroom that's only 10 steps away.

The Reality is I can't go places alone
The Reality is I can't walk without crutches/walker
The Reality is I hate DEPENDS!
The Reality is THIS SUCKS!

Keke it's really sad when they don't call at all...received 2 kisses (from family) and one text from a friend.....while I'm grateful for that, I used to be the "life of the party"...my New Years party was noturious.....now I struggle to see midnight with family.The most difficult for me is not being able to "go" alone.....This year, I gonna get an aide. I am currently product testing something other than depends. ..There's hope for the future. Only walking inside my house..thinking of trying "walking pill" we'll see.

Anyway....HAPPY NEW YEAR