Does it ever feel not real?

[Armygirl73]

So, as you may know, I was given my clinical diagnosis this week. I had a bit of a meltdown, but now I'm in this weird place.

Since the vertigo bout and the meds for that, I've been feeling pretty good other than some fatigue. When I do get those weird skin crawling things, I just think, oh, that's the MS nothing to worry about. Then it hits me ... I've been told I have MS. Then I start wondering how come I feel okay, but so many others feel so miserable?

I know we are all in different stages, but sometimes this whole thing seems like a dream. When I feel good, I wonder how it could possible be real that I have MS. But the other part of me remembers what it was like to always feel good. I don't have that anymore, but I do have hours throughout the day most of the time where I feel fine. Is that normal?

Then something will hit me like not being able to focus or seeing things wrong, forgeting all my thoughts or how to spell words, and then it comes back to me.

Why is it like this? Is this just a stage of acceptance or does it always feel this way? Before, when I didn't know sometimes I felt like a hypochondriac because that was the way others (docs) sometimes looked at me, and as supportive as my husband is he can't actually understand what I'm feeling so it just seems like a lot of little annoyances sometimes.

Will this go away ... the two states of reality, I mean. Or is it always this way -- standing in two worlds at one time, one foot in the norm and the other in the crazy world of MS symptoms?

[Armygirl73]

Hi all,

Thanks so much for all the comments and advice. This is such a crazy thing to deal with ... it's nice to have you all to talk with.

I have a terrific family, and they are really supportive about everything, but even sometimes they have to shake their heads in wonder at the things I feel and go through.

You guys are terrific, and I love coming here and bonding with you all. Sometimes I have to laugh at the things we expereince and other times cry, but you are all right that it is just our journey to take.

Funny side note though ... yesterday I started experiencing a new sensory symptom. My nose goes numb! It's kinda silly and funny -- at least I know what it is now! It feels at first like someone pinches my nose shut, but I can still breath fine. Then it feels like they release it, but then it's numb. After about 15 minutes it's gone, and then it will randomly start again. A strange one for sure! I've had pages of strange things, but this is the first time they've involved my nose!!!

Off camping today, hope everyone has a terrific Labor Day weekend!

God bless,
ArmyGirl73

[opie74]

When I am feeling good, I like to pretend that I don't have it.  I try to only think about it when I inject.  I think that it is a positive thing to be as normal as you can while you can.  I have become so used to thinking like this that my husband usually notices my sx before I do. :-)  I was dx last October, and I just finished my 3rd round of steroids yesterday.  I go round pretending I am fine until I just can't anymore.  

I did not realize how bad I had felt and for how long until I got my first solumedrol in February.  About two weeks later, I told my husband that I felt like the old me, like I did when we were married (6years ago).  It was nice and yet disturbing to know that all that had been wrong with me was an undiagnosed case of MS.

Living in both worlds is not a bad thing.  It may even be healthy, emotionally.  I used to get really upset when I would come on here and read about everyones sx.  Now, I am thankful that I am not there yet.  When it gets to real, I back away and take a good look at how I am doing and remember to be thankful for it.

Just keep medicating, praying, and living your life to the fullest. Each day has its own suprises, good and bad.  Try not to borrow worry from the future because only God knows what it truly holds.

Best wishes,
Opie ann

[Eyesnlegs]

I agree with everyone here, it is better to know than not know. I had 20 years of being blown away by medics untl I my self believed I was a hypochondriac.

Just take one day at a time and be kind to yourself, I still find I tell others this but find it hard to do myself. But you are never alone on here.

Here is the thread mentioned with some wonderful discussions from others on here:

http://www.medhelp.org/posts/Multiple-Sclerosis/Acceptance/show/1034989?personal_page_id=231101

(((hugs)))
Pat

[shermay]

Take a deep breath - don't stress yourself out too much ok?

It takes a long time to adjust to being dx with MS.  I ws dx 9 years ago now, and my emotions were all over the place for the first few months.  One day good, one day bad etc., my husband was with me all the way,

You can never tell what course your MS is going to take.  I was dx with benign, as the neuro hoped that for the first few years I would just have sensory probs. - which was proved correct, but as I'm sure you've ben reading on this forum MS is nibbling away at our brain cells - even though we don't know it.  After approx 5 years I started the RR stage, and only just now been upgraded to secondary.  

I use a walker from the advice of my friends here on the Forum, but they too have pointed out that this may not be a permanent thing.

What I am trying to tell you is (not very well I think, brain fog this morning) take one day at a time.  Find out all you can about MS, (and not from some quack pages) from the  MS Society for example.  Talk about what you are feeling, they have 24/7 manned phone line for people who want to talk.  It's easier to talk with people - just like us - who know where your coming from, as we have all been there ourselves:/

Scroll down and find Pat's thread on Acceptance.

Debs

[HVAC]

I still wake up  everyday and think I don't have MS. How could I have MS?

[MsWobbles]

Hi, Armygirl,

Congrats, again, on the diagnosis!!  Knowing is so much better than not knowing.  Being out of Limboland is so much better than being in it!!

As for your normalcy at times, MS can be less pronounced in some people - some have very minor episodes associated with it and lead essentially normal lives.  Hopefully, you are in that category!!

Did a military MD diagnose you?  I grew up with socialized medicine, as an Air Force brat.  

WAF

[essdipity]

You need to give yourself more time!! Your diagnosis was so recent, you have a family, you live in a foreign country and you're getting ready to move. That's a huge amount on anyone's plate.

It's great that you have periods of feeling perfectly healthy. That could go on for years, and let's hope it does. When 'reality' intrudes, as is already happening for you, step back and let it happen, adjust a little and go on with your life.

I think you're doing very well. Just allow more time for the emotional adjustment.

ess

[Lulu54]

Dear Split personality,

you have nailed this one pretty clearly for a newbie in this land of the lost!  :-)

The denial still hits all of us - we have kicked that thought around here on ocassion - I've been dx'd a year and it still doesn't feel real most of the time.  

The mind is such a powerful tool in controlling our bodies and our emotions.  It is capable of playing great tricks too.  

From my experience, this will calm down a bit once you truly have some time living with the thought that you have a disease in your body that has no cure, and no way to anticipate what will happen next. That's a cheery thought, right?  But its also the reality of what we live with daily.

BTW, its ok for you to feel ok.  That's a good way to be - have lots of empathy for everyone who isn't ok with their MS right now, but keep that separate from your own mental and physical state.

Enjoy the good days!
Lulu