Three years- what I have learned

A forum to talk about the general challenges of daily life with MS.

Postby Terry » Wed Apr 01, 2009 5:01 am

I have learned not to say the "big" MS words aloud to anyone. Since I don't go to MS meetings and I haven't seen a neuro since '06, I only READ this stuff. I don't pronounce it correctly. Oligowhat? I read "low dose naltrexone" but in my head, it rhymes...low dose nextralose. And lhermitte? That is the one I said aloud to the homeopath. He wiggled in his chair, I'm sure trying to get a grip and not burst into laughter. I was just chatting it up and it came out the way I say it in my head when I read. Sheesh.
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Postby Lyon » Wed Apr 01, 2009 2:03 pm

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Postby AllyB » Sat Apr 04, 2009 4:28 pm

Terry - hey there, so nice of you to remember my boys, they are well thanks - it was my youngest's 6 th birthday today and we had a blast, it was a real good day! Thank you so much :lol: If I can find the picture thread I will post some new pics there - big hug to you. This is a great thread, so good to communicate, find out how folks are doing...

Lew, Jack, Bob - you guys, just love you all :wink:
Lew, you always find a way to make me feel less embarrassed about how my mind wanders - and yep, it usually does this late at night, as it is doing right now (2 am for me), when yet again, I can't sleep...Kate Hudson in a red wig?? Hehehe, that is the best compliment I have had in years - I am probably 20 years older than her, so thank you very much, I will take the tickles where ever I might find them, so consider me tickled :lol: Oh, in case anyone who doesn't know me is reading this - no, I am not wearing a wig, I am not bald, that is my real hair...And I only say this to avoid fielding sympathetic questions about how I lost my hair and i it has anything to do with ms...
Jack, how are you doing? Good to hear you are having a giggle now and then...
Bob, you know, on those rare occasions when I actually am able to speak on a matter with any authority, I can present a convincing arguement - so thank you or recognizing that - I have missed giggling with you :roll: Still chuckling at your red cheeks with your wife's doc...

Not to be too sentimental, but today I have learned that watching my little one's excitement and happiness, spontaneous joy and laughter still feature in my life, and I am very blessed to have so much love around me every day...Tomorrow (today actually) I have to do my Avonex shot again, and it pays to stay focused on the big picture to get me through that...Woohooo!!
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Postby Lyon » Sat Apr 04, 2009 4:33 pm

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Postby Loobie » Sun Apr 05, 2009 6:28 am

Tell me about it, my daughter just turned 13. I can't freakin' believe it. I watch her as well and my big fear is that she won't 'go for it' in life in order to show solidarity with me. I mean I have basically had to kick my wife and daughter out of the house sometimes because they feel guilty going to King's Island (big amusement park around here), or to a Red's game or something without me. I just need to make them feel OK about feeling OK. I would just die if I thought they were missing out on life just to stay at home with me when it comes to doing 'stuff that takes beucoup energy'.

I think they are finally realizing that Dad can't go everywhere and organize all the activity anymore. They seem to be realizing it slowy but surely. I guess it's a big adjustment for them too. I mean in the past when one of us would be sick or something when something was planned, we'd stay home with the sick one and just do it again at a later date. I think they are now realizing that there is not going to be a later date and that they need to get used to going to festivals, fairs and events that are "big" geographically without me. I hate it, and they do too, but I can't allow them to get "sympatico MS".

I will say this makes me realize somthing that I truly miss that makes me sad. I loved taking care of my girls. I mean I still do emotionally and I still work, so financially somewhat too. I just mean spoiling them. Not with treats and material things, but with effort. I would always be the one that went and did everything. If we needed a snack at the ball game, they would sit there and I would 'serve' them. I would always be up early on the weekends and make a big breakfast, or go out and get doughnuts or something. If we needed inner tubes at the water park, they could relax and I'd get everything. That doesn't sound like I'm wanting it to. But I just adored doting on them and making sure they got the maximum enjoyment out of everything. That sounds weird, but it made me enjoy things that much more to know that they got the most out of everything. It doesn't seem like anything that significant, but it is something I really miss.
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Postby Lyon » Sun Apr 05, 2009 6:50 am

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Postby AllyB » Sun Apr 05, 2009 3:51 pm

Bob, I can already feel the years slipping through my fingers - they were babies just yesterday, now they are little boys who want to do everything for themselves, sigh...Speaking of that, Lew, I get how you feel - as a Mum, my role is that of care-taker and nurturer, and although I still do most of the daily stuff, the cooking and bathing and homework etc, I don't take them out nearly as much as I used to. It made me sad to read your words, they hit pretty close to home in some ways, but I am sure your wife and daughter really appreciate everything you are able to do with them, even if it is just cuddling up on the sofa watching a dvd...We used to have something fun to do every weekend, and I often feel guilty that we are not as active as a family any more - my husband will take them to the beach or to judo etc - Sundays are especially difficult because of my avonex shot - it has become known as Mummy's sick day :( Breaks my heart to see how sweet and gentle they are with me on Sundays - they shouldn't have to be, you know?
So Lew, I think you are doing the right thing encouraging them to get out and experience life - I know sometimes you have to push them out the door - but Bob has a point too about finding stuff at home to do together too - I have them making cup cakes and ice-cream with me, I sit and paint with them, I swim with them, and often sit in the garden while they play and shout encouragement from the sidelines, hehehe. But I need to work on doing more I think - thanks Bob :D
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Postby Terry » Tue Apr 07, 2009 6:59 pm

OK, I'm doing this again. If I bore you, please forgive me. This entertains me somehow.

I have learned never to jump feet first into a pool anywhere near the corner. I don't go in like this.

O
'!'
___l

I go in like this.

/
__l

I guess that means I have no center? I'm surprised I didn't crack my head open.
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Postby Karazhan » Sun Apr 19, 2009 4:02 am

I have learned that; Just because I think bugs are crawling on my legs doesn't mean it's so...but I'd better check, just in case.
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Postby Terry » Sun Apr 19, 2009 10:50 am

LOL!!!!!!
Been there!
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Postby Terry » Sun Apr 19, 2009 10:58 am

I have learned to keep cooking for and entertaining my adult children even if it takes days to clean everything back up. They need a mom as much as I need to be one.
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Postby Loobie » Sun Apr 19, 2009 2:52 pm

Hells yes! We all need to take that approach with virtually everything. I find I'm in a much better spot mentally and spiritually (although not always physically) when I 'ignore' my MS. I mean I never ignore it, but rather just go at it like you are not really feeling what you are feeling. Sometimes you just feel too bad, for me especially when the dizziness kicks in, but I need to go for it even when my legs are killing me and I have no strength to do the stated task. But if I push through and do it anyway, even if I collapse in a heap, I feel like I got something done and didn't let IT win. Good thoughts Terry.
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Postby Terry » Sun Apr 19, 2009 5:36 pm

You should see my kitchen!! :oops: :wink:
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Postby Loobie » Mon Apr 20, 2009 3:54 am

Ambitious project started type of situation?
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Postby Terry » Mon Apr 20, 2009 1:54 pm

Lol, Lew. I was talking about the dishes that are never quite finished. But yeah, that too!
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