Personal Responsibility

[IntoDust]

"LIFE IS 10% WHAT HAPPENS TO YOU
&
90% HOW YOU REACT TO IT"

In light of the recent posts on the forum, I think it's time we address personal responsibility and how it affects us in our daily lives. I think it's a fair assumption to say that we have all struggled to accept our diagnosis at times. Some of us were relieved when we were diagnosed, others were horrified, and some were indifferent. Over time, those feelings can change. Just look at the 5 stages of grief: Denial. Anger. Bargaining. Depression. Acceptance.

Personally, I am swinging between anger and acceptance. I'm not following the linear norm of going through the stages. But what I am doing is allowing myself time for introspection. I'm looking within myself to identify why I am so angry and taking the moments of acceptance to feel some peace.
As a personally who carries the weight of the world on her back and picks up emotion from everybody I come in contact with, looking at things in a purely logical sense can be hard. At the end of the day, I can not escape the fact that "It is what it is." I can't change this. I can only change the way I react to it.
I have been very open about this with everyone in my life from the beginning of the diagnosis process. I wanted to ease them into this as I knew in my gut what I was. I was trying to protect them from the sudden dropping of a bomb. I was trying to protect myself and arm myself with as much information as I could. I used the facts as a shield and believed that knowledge was power.
If I could understand it, I could overcome it. Or at the very least, cope with it.
I am taking responsibility by admitting for the first time in my life that I am not okay right now. I have always assured everybody that I was fine. Even the day I was diagnosed I was softening the blow by assuring everybody that I was fine. But I am not fine. I am riding the wave of a slow crash and burn, physically and mentally.
I am taking responsibility for my mental and physical health before I get to the point of which I may not come back from. I have had to go on disability from a job that I absolutely love and that breaks my heart. I have had to admit that I am not invincible. That I am so tired that I can not fully function in a meaningful way.
Despite all of this, I truly believe that eventually I will be fine. I do not see "puppy dogs and rainbows" in my future, but I see a new normal. I'm allowing myself to grieve for the person I was and the person that I won't become, but to get stuck on the ghosts of the past and the future is not fair to the present self. Right now, in this moment, I am taking responsibility for my actions and my emotions by being honest and receptive with myself and others.

How did all of you find your path to acceptance? Are you there yet - or are you swinging between multiple stages of grief as I am?

[marti]

I've been in denial for years. But my reasons for that are because I do NOT have all the markers for MS, yet was diagnosed with my first MRI and my medical history. I went through about 15 years of symptoms before something happened that was very conclusive to the PCP that I had at the time.

I've never asked "why me" or felt really depressed about it. I'm not happy about it, but I was relieved at the diagnosis. Happy it wasn't something more serious.

I feel lousy most of the time, but I am 68 years old with several autoimmune diseases and the usual aging problems. Most of the time I don't know which disease or condition is causing each of the different aches and pains and odd ball stuff.

I worked at the same job until I couldn't. My driving is a little dicey.... lots of dizziness and balance issues. So retiring was actually a relief too.

The last few years were consumed with taking care of my sick husband until he passed last June. I had to just think of him and put myself on the back burner. Actually, all that distraction helped me. Now that he has died, I notice my anxiety level is dropping. Not taking as many pills as I was.

I really don't think much about the future. When I met my first neuro he said he didn't see me as someone who would end up in a wheelchair. So far.. that assessment was right. My family is mothering me now that their Dad is gone and watching over me. Sometimes.. a little too closely. I love them so much.

Sometimes I still have to be convinced that I have MS. I have met and talked with so many patients who have a much harder time than I do. Sometimes I feel a little guilty because of that. I feel like I should have part of their share of MS.

Well, hang in there guys. It's a wild ride at time.

[pennstater]

Some wise tactics in there IntoDust.

Most times, the stages of grief aren't really linear following a diagnosis. And truth be told, some phases may be revisited on this MS journey.

I know you are fairly newly diagnosed. My 1st neuro told me that on average, it takes about two years to get there and stay there (for the most part).

For me, it was right on. The first year was an emotional roller coaster ride. My emotions started to level out some then and kept getting better.

For me, whenever I would try to retreat into denial, I was reminded that I had a 2nd opinion by the head of an MS clinic (part of neuro's strategy to prevent me from staying in denial).

Part of what helped me was seeing a therapist, which gave me a safe place to talk thru my fears without upsetting family and friends. Once I talked thru them, they stopped dominating my thoughts.

Also what helped me was educating myself on MS. My neuro recommended a few books, lent me one from his library, He advised me that I needed to become my own best advicate. In doing that, I think it gave me the feeling of controlling what I could, and letting go of what I couldn't.

I would come here for some info, but other times, stayed off, depending on my own state of mind and how strong I I was feeling.

Finally, what helped was just time. Time to realize that I was living life, adapting when I needed to and prioritizing the important things. I was still me, but at the same time a little different.

BTW - big believer that our own reactions are a huge influence on how our life evolves.

Good luck. Hope to see more posts from you.

[502E79]

IntoDust,

Quite a while ago I posted thie following and your thread brought it to mind again. FWIW

https://www.msworld.org/forum/showth...ile&highlight=

Jer

[Daisycat]

I think life is more 50/50... Expecting happiness after certain things is crazy.

[IntoDust]

I know you are fairly newly diagnosed. My 1st neuro told me that on average, it takes about two years to get there and stay there (for the most part).

For me, it was right on. The first year was an emotional roller coaster ride. My emotions started to level out some then and kept getting better.

Two years, huh? That feels like forever. I figured out exactly two years ago what was wrong. It was so obvious, yet I kept doubting my interpretation of symptoms and episodes because I would see the symptoms written on health pages, yet the message boards were full of, “I woke up paralyzed!” “I woke up blind!” and “I woke up numb from the neck down!” and by that time, with the exception of losing a lot of vision in one eye, I had always laughed off my symptoms! Like, I genuinely thought it was funny that I peed 20 times a day like a little old lady. I thought it was funny when my hands were clumsy for a week because the results of me trying to use them were actually laughable. MS isn’t funny and my symptoms were, so it couldn’t be, could it? I spent the next 7 months with a gut feeling that this was about to go from a comedy to a drama before I approached my doctor because I couldn’t shake what I started to realize.

I love that your neuro had you get a second opinion so you couldn’t slide back into denial. If I had stuck with my in-network neuro instead of my specialist, I could have denied it for a long time and he would have been willing to discharge me because he felt my symptoms weren’t typical MS. My specialist, on the other hand, has been an amazing gift. I met her first and my gut said, “Trust her.” Since I was running off of gut instinct anyway, may as well take it all the way.

Thank you for your response. It was perfectly worded and I really appreciate your honesty. It has helped immensely.

I hope to to help people here too, but I’m more of a “let’s research and look at some facts that’ll make you feel better!” type. But I need to balance facts and emotions while learning to accept the unknown.

[IntoDust]

IntoDust,
Quite a while ago I posted thie following and your thread brought it to mind again. FWIW
https://www.msworld.org/forum/showth...ile&highlight=
Jer

This! I love it. It’s exactly how I feel and why I encourage others to be secure with themselves and not fear being alone! It’s perfect.

Have you read the short essay, “Welcome to Holland”? It’s about parents of special needs children expecting one life and getting another. While it’s not written for people with a lifelong disease, the message is very appropriate and fitting.

[Daisycat]

Pennstater

two years? I could see that for some people I guess... you did say average though since I know it sounds like some people here accepted it day one.

[pennstater]

IntoDust

Didn't mean to scare you with the 2 years. And he said on average. Some quicker, some longer. There was a big difference year 1 versus 2. Two years was when I could go without ever thinking about MS, accept for my injection time. But even then, it was just prep, inject, clean up, and forget all about it. Or if it came into my thoughts it was in passing. 18 months was a big turning point, where I started to feel like myself again. It was such a huge relief.

I was also blindsided by the diagnosis, so you may have a leg up in the process.

I hear you on research. In my career, I was a business systems analyst/data analyst/project manager. So always my approach. I used to drive my neuro crazy wih questions trying to understand some studies way over my head in required knowledge! But he would push me to stay current with MS research anyway! I have to say, I have been slacking the last year or so. Need to dive back in.

Having a good neuro makes a huge difference. Aside from their medical expertise, if you can truly talk to them, it makes the road alot less bumpy.

[IntoDust]

Didn't mean to scare you with the 2 years.

Oh, it didn’t scare me. I was just surprised. I can’t go the next two years feeling like this but then I remind myself, “It’s been less than two weeks since I was diagnosed”. Like, who’s gonna be getting over this in two weeks? If I wouldn’t expect it from anyone else I can’t put that kind of pressure on myself. But we tend to be hardest on ourselves, now don’t we?
I have seen a big divide in the reactions to diagnosis on both this board and another site I frequent. Those that were diagnosed after a big flare and didn’t see it coming have a much harder time coping. Those that had a long, drawn out diagnostic process feel a sense of relief initially. I hated the long process I went through. It was a year and a half of evaluating my mental state because I started to think I was a little crazy. Like, a weird form of Munchausens or something.
But now I'm allowing myself to acknowledge my symptoms. I would run myself into the ground to prove to everyone, especially myself, that I wasn’t just being lazy. I’m actually... sick. (I don’t always feel this bad though. I’m just having a long flare)

[Carolinemf]

It took more than 10 years from major symptom onset till positive diagnosis for me.
But that was back in the eighties. MRI's just coming into their own. The best music but hard in this way.
I had actually self diagnosed ms years before because of family history. But had been told by docs all sorts of other things .

It was a pretty big shock to read the radiologists report in the mri envelope 2 weeks later on the way to specialist apt saying ms high probability.
we had 4 of our 5 small children in the car and were still an hours drive to go when my husband and i had my suspicions confirmed. He knew very little about ms. What i knew was that my aunt and uncle both died in their early 40's 6 months apart from ms.
I was 28 and had been having symptoms for over 10 years.
I looked back at my kids and had this overwhelming fear that i wouldn't be around to raise them.

I spent the next 20 years killing myself to provide for every one. And achieved as much as was humanly possible.
My husband often says i am just to stubborn to give in. Pore man

I am now 51 and still doing most things a lot my age cannot do without ms.
I am proud of myself. And my husband as well.

i was a daughter, a DIL, a sister , a wife , a mother and an employer and i had responsibilities to all these people that relied on me.
This over whelming stoicism and sense of responsibility made it possible for us to cope with and do many things that we wouldn't have been able to.if we had not seen things as a challenge and sat on our hands i really believe i would be much worse today.

For me- having what felt like a hammer ready to drop hanging over me was a great incentive.

I remember my grandparents and parents always planning for the bad times as well as the good - there could always be a drought or another depression or war etc.
This (and others)value and sense of responsibility to others and yourself seems to have largely disappeared with the younger generation. imo
It worries me what they can cope with.

I really hope this doesn't get taken as 'preachy' not meant that way. Jmho.
And oldies experience

[IntoDust]

I really hope this doesn't get taken as 'preachy' not meant that way. Jmho.
And oldies experience

It wasn’t preachy at all. I’m part of the forgotten generation between X and Millennial. I was raised by liberal, hardworking Baby Boomers who were both revolting against the stoic generation before them while still being able to employ that same work ethic. My generation is much more into self-care without expecting everyone to be a winner. This is perhaps where my guilt for having to stop working temporarily comes from.

[Carolinemf]

Thanks for the your h.o intodust

[Jules A]

I’m part of the forgotten generation between X and Millennial. I was raised by liberal, hardworking Baby Boomers who were both revolting against the stoic generation before them while still being able to employ that same work ethic.

Sigh this generation sounds like exactly where I'd like this country to remain in my perfect world. A little kinder and more reasonable than the elders who were simply trying to survive and far more realistic than the new generation who thinks everyone deserves a trophy and that life is supposed to be a cake walk.

My father, probably a combo of the German and living through the depression, was very stoic and of course hardworking almost excessive although largely because they were on the poor side I suppose. He is so smart and unfortunately wasn't educated to his full potential but said that all his relatives worked until they got sick then retired and died. He strategically planned to save for a retirement which he did and has enjoyed many years in an active retirement, he's 89 now. Thats my goal also especially in light of MS. I'm trying to plan for the future while also enjoying the present.

[Mamabug]

The two years is kind of a process. It often moves forward, sometimes moves backwards. For me, I've discovered that my timeline for grieving, somewhat deeply, is about three years. ( My mom's death, my MS, loss of a career, etc).

That doesn't mean there is no acceptance prior to that. And it doesn't mean that life is horrible during those first three years. But, after three years, I seem to turn a corner.