Getting MS Out Of My Head -

[Lyraek]

Hi - I was dx'd July 2013 after going totally blind in one eye.  Have some vision back, so that is good.  So far, things aren't too bad - tingling, spasming, tripping over my toes, weak muscles, numbness, "stuttering" body parts, yadda, yadda, yadda.  Still work, still walk, am aware I am much better off than many.  Am past the terror and the fury.  What I am now, is sick of thinking about it.  Every little thing that happens is a reminder - "Oh yeah - I have MS - !"  I keep myself occupied, but it's always there in the background, waiting to pop out.  Do you ever get over thinking about it?  I've never been one to think about myself a lot, and now, every time I turn around, THERE I AM!  Yeesh!!  I'd like to know if y'all have found ways to stop thinking about it?  I really appreciate anything you might have to say about this.

[maxthecat43]

It's tough for the first couple of years.  But with time, and especially when you're more stable- (in remission, if you have the relapsing/remitting form), it will fade into the background.  

[Guitar_grrrl]

Lulu!  I LOVE your analogy with the passenger in the car!!  LOL!  

I tend to resemble JJ's description of keeping on.  It also comes back to bite me in the butt!  I'm listening now, more than in the past.  

I just live.  One day at a time. I don't necessarily wake up and say, "oh, yeah, I have MS".  I get up, shower, go to work, do my Yoga, and basically live.  But when the idea of a big hike, or bike ride, or river trip comes up, I understand there will be recovery time involved, too.  Most of the time I find the fact that I'll "pay for it" is worth the fun!

Keep having fun!

[Lulu54]

Welcome  - I am so glad you came out of the shadows and introduced yourself.  You have received a  variety of personal views, all of which are great and I know you will find useful.  

It seems to take a good year or so to learn to live with MS as a constant companion on this road trip.  At first, MS is in the driver's seat- steering us to where it wants to go.  Slowly we regain control of the vehicle and take over the driving and MS sits in the passenger seat, but often acts like the back seat driver, interjecting and interupting with other thoughts.  It's hard to ignore that back seat driver, but not impossible, and even though we hear the MS we learn to not let it dominate and determine our direction.

Finally, there comes a point where you pull over, push MS out of the car and shove it into the trunk.  You might hear a few muffled protests but for the most part for the majority of us, it stays out of the way and you can get on with the journey.  There are times when that trunk pops open and  MS highjacks the driving for a while, but each time it happens you will have more experience with understanding how to coexist and then regain control.

My point here is MS is with us and  will always be with us, but as we learn to live with it, MS no longer becomes the cornerstone of our lives.  It does get better - I hope it happens soon for you.  

The increase in lesions is enough to put MS right back into that driver's seat for you.  I trust your neurologist and you have had a thorough discussion about your treatment and whether you should switch therapies.  We know that not everyone responds the same to each of the 10 disease modifying therapies (DMT) and with so many options, it is ok to switch from one DMT to another until you find the perfect fit for you.

welcome again and I hope we see you around more,
Laura

[karryon55]

Hi lyrae,

I was dx'd 2 months after you so I have felt similar feelings as you have so far. I do still struggle with blaming a lot of my problems on my rheumatoid arthritis which I have to stop doing. Things like my speech problems definitely remind me of MS & I'm learning to just chuckle at myself rather than get overly concerned.

For me the dx has helped me explain so many problems I've had for nearly 20 years. All the falls, bladder issues, fatigue, pins & needles etc. & particularly the times I had to use a wheelchair & I knew it wasn't just pain from my arthritis causing the difficulties with walking. I think that has been a bonus for me.

I have noticed though the docs want you to pay more attention to your body & things I would have just brushed off before I have to pay more attention to. This in itself is not an easy way to avoid thinking about the MS at every corner. I also think it can't be healthy to over analyse your body hmmmm.

It's certainly hard to turn down the MS dial at times but others not so hard. I think that as we are both still so newly dx'd it may take more time. Some people on the forum have said the first year is the worst. I just know for me trying to keep humour in the overall scheme of things helps. I also meditate & empty my mind of useless chatter which helps a lot.

I'm sorry to hear you have new lesions. Are you on a DMD? I'm glad you have found this community because the folks here have been very supportive of me as well. I also had never posted on anywhere before here & still don't post anywhere else. I don't need to because I get all the support I need here.

Take care of yourself,

Karry.

[Lyraek]

What wonderful responses - thank you all so much.  Each of you has given me a different viewpoint to consider, and have given me hope that while the "thing" (as I call it) may get my body, it doesn't necessarily have to get my mind, too.  Unless I let it - which I WON'T!  Last week's mri shows 5 new lesions - I've always told people I have a "swiss cheese" memory - guess I should be more careful what I joke about!  Lol!

I read this website for several months before deciding to post - this was my first post anywhere, ever, about anything.  I very much admire the caring, the kindness, the quiet strength, and the humor I see here from all of you.  Keep fighting the good fight!  Take care, Lyrae  

[HVAC]

Sure you do with time. It is still new. I wake up and forget I have MS and Cancer. They really only come up with taking medication, having treatment or having symptoms. I use mindfulness to live life to the fullest. The first year with MS I would wake up and think darn I still have MS. The trick is learning to live with illness. Not letting it define you. I am so much more than my illnesses. The first thing people think of when they see me is not illness. It is my love of animals, my writing, my art, my sense of humor, and my brain.

Alex

[supermum_ms]

Hi and welcome to our little MS community :D

You have seriously got me thinking lol hmmmmm you know to be honest with you, i've spent my life with the mentality of 'keep on keeping on - don't stop, just keep moving!' but the more i did that, the more I crashed and burned. It wasn't until i actually understood what was going on, and worked out that i had to stop ignoring everything and actually start paying attention to my bodies signs before it was in your face obvious, that I now can keep on keeping on, though a tad differently.

I'm probably a typical mum, and like all typical mums, the last person a mum usually has time to think about.......is her self. Everyone including the one eyed gold fish, definitely came way before me on my daily to do list but there literally came a time when i just couldn't hide what was going on any more. I actually think i'm definitely more aware of me but at the same time i'm exactly the same me, just more tuned in, if that makes sense lol.

Soooooooooo I suppose for me instead of trying to forget about it, i'm more of the mind that it's been better for me in the grand scheme of things, to actually not try to, simply because the knowledge and understanding has helped me and mine. That's not to say, i'm constantly (mentally and emotionally) focusing on every thing my body gets up to, i'm more likely to acknowledge that it is what it is and laughing at the weird lol laughing is something i've always done and it tends to work for me :D

Cheers.............JJ  

[kwarendorf]

Hi L- Welcome to our MS FunFest!

I am ever aware that I have MS, and I'm not sure that's a bad thing. I'm not like the Little Engine That Could, "I have MS. I have MS. I have MS." But MS shapes the way I go through the day. I tend to know where bathrooms are. Unlike the rest of commuting NYers I walk up and down stairs. Little things, but they are an important part of my daily life and definitely governed by MS.

My life, although complicated by MS, is made easier by acknowledging these changes. As a newbie you may be discovering what your new routine is. Once it becomes clearer you won't necessarily worry about over thinking MS :-)

Kyle

[immisceo]

I think some of it just comes with time. My whole first year post-diagnosis was pretty frenetic, quite similar to how you describe (I was also diagnosed with a stonking, full-eye optic neuritis). You're one step ahead though, in that you not only realise it but you're reaching out—two things it took me a lot longer to do. Outside support can be so helpful, that sense of solidarity.

But as I said, time was the key factor in me 'snapping out' of the hyperaware headspace I stayed in for so long. There's nothing like endless days of the sky *not* falling to eventually convince you that it, in fact, won't. Dealing with the uncertainty of what's to come and the realisation that your own body has gone rogue... well it's a shock to the system. It take a while to recallibrate, especially if the diagnosis was out of nowhere.

Oftentimes when people are diagnosed, it's the end point of a long struggle. They find some relief in hearing definitively what's been their problem and feel empowered by their new ability to do something about it, like begin treatment. This is a whole other ballgame if, like me, diagnosis and any hint of physical problems came like a bolt out of the blue. It's like jumping into the deep end of a freezing pool instead of slowly easing oneself in. Neither is pleasant, but one is more of a shock.

I don't think it's a coincidence that some of the words you used, "anger/terror", are words that can be used to describe the process(es) of grief. In a sense, there is a period of grief after diagnosis. The life you didn't even realise you'd taken for granted is suddenly snatched away. Things may not be that bad, but it still doesn't stop the nagging 'might have been' thoughts coming sometimes.

To sum up, I think you're going through a normal process, post-diagnosis. Whether you have an easier or more difficult road ahead, you do have something that's not going away. It won't get out of your head, literally or figuratively. But I promise it gets better. It may take a while, but your new normal does become normal!