Sense of Urgency

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ButterflyDoodle
New Member


Date Joined Apr 2007
Total Posts : 16
   Posted 5/2/2007 11:52 AM (GMT -6)   
Hello...haven't posted or logged on in a couple of days... been really busy at home.  Today I am hanging out at my siuster's bakery.. she makes the yummiest cookies ever.. if you are ever in Sacrameto, California you will have to try one!
 
Anyway just wondering if anyone has felt a sense of urgency about life and doing things since being dxd. Lately I have been feeling that way.. worried that one day I may wake up and not be able to care for my children due to some physical ailment that MS has forced upon me.  I find myself trying to do as much as I can, all the time with and for them.  They are 2 and 5 years old.  I just hate that MS is so unpredictable.. that it can halt my ability to do things at any time. 
 
My husband said he notices that I spend all of my time at the kids' school volunteering, taking them to the park or activities, just being around them all the time.  I am currently on short term disability till June but had been unable to really work since March. I know he wishes I would just be ok to work steadily again.. but although I was against going on disability initially I am taking the time to help my body and spirit mend somewhat and doing all I can wth and for my babies.  I am just so scared at times of the day when I won't be able to care for them. I never felt that way until the morning I woke up and could not walk, feel my feet, or make it to the bathroom unassisted. Since that day even though I have recovered enough to just rely on my cane and get around I have a sense of urgecy wanting to do as much with my babies as I can while I can.  We were putting off a trip[ to Disneyland until they were older but I want to go this summer now which I know my husband is going to think is slightly crazy since our finances are not is such great shape, but what if I cannot do it in 2 or 3 years?  I am just focused on siezing every moment, making every day a great memory right now.  He understands but says it is frustrating at times for him, but that if the situation was reveresed and he had MS he would be doing the same thing.
 
Okay I babbled... just have alot pent up inside about this. 
Hold on my brother don't give up, hold on my sister just look up. There is a master plan in store for you if you just make it through. The best is yet to come!


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/2/2007 12:20 PM (GMT -6)   

Frankly I think your kids..especially the 2 year old...are way too young to enjoy or even REMEMBER a trip to Disney, 6 months from their visit.

MS certainly is unpredictable. But it's not terminal. And there are many many folks who don't have serious disability from it, and rock on for YEARS without anything really major going on. Perhaps you'll be one of them.  2-3 years from now..when the kids are older, you are back to work, your finances are in better shape...Disney will still be there.  And it's quite likely you'll be able to go. Maybe you'll need to rent one of the scooters they have available, especially if you go in summer, when it's way hot...or maybe not.

Of course the bigger issue isn't your trips to Disney..it's your sens of impending doom.  It's "more impending" for us who have a chronic illness, to be sure...but truth is, life is unpredictable.  People get injured...even killed...all the time, and before they've done all they've wanted to do in life!  You can't rush experiences, can't rush "living" into your kids.  You can just do it with them, day by day.

I think it's fine to focus on every single moment.  But you can't begin to pack a lifetime into any one day.  All you can do is do the best you can that day, go to bed, wake up in the morning, and do the best you can with THAT day.  And pretty soon life will rock on, and you'll be in it -- maybe not in the same way you were before MS -- but you'll be there, playing with your kids, sending them off to high school, dancing at their weddings.

I've had MS for 24 years. Since having MS I've travelled to Canada several times, all throughout the US, to the Philippines in a wheelchair!, to Alaska... This summer I am travelling..by myself..in my wheelchair..by Amtrak train..to Portland, Oregon, half-way across the country from where I live.  Do I wish I could do it without the chair? Well of course.  But I can't...so I do what I have to do to enjoy my life.  So will you.

What do you do for a living? Is there a way that, with adaptations, you can get back to work, if that's what you want to do (and your family needs the $$)?

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


ButterflyDoodle
New Member


Date Joined Apr 2007
Total Posts : 16
   Posted 5/2/2007 1:35 PM (GMT -6)   
I would not classify my feelings as "impending doom" I don't feel doomed, I just feel different and worry about the future. I am newly dxd 7 mos, don't have your 24 years experience, still trying to adapt to alot, especially the unpredictability.. I have always planned things out, I have always thrived on being organized and planning way ahead.  I know that anything can happen at anytime to anyone as you mentioned with car accidents, etc and I know MS is not terminal. I  would hardly compare being in pain like I am on a daily basis and experiencing bouts of loss of mobility and limb use, and all the other symptoms to a chance car accident.   My 5 yr is sympathetic and confused.. wants to know why I can't walk or lift things sometimes, why we can't go places or do things sometimes. It' gets hard and I am pretty upbeat about MS majority of the time but right now I am having a hard time coping with the changes it has introduced.  I don't  want to "rush" experiences, just make sure that they have them and I am active not just a bystander. That is what I was trying to post about and just wondered if anyone else had those same feelings.
 
I work as a substitute teacher for both public and private schools, new venues, differnt classes, ages, work requirements each day.. as much as I like to plan I really did enjoy going to the different locations.  I also work as a health education assistant for Kaiser Permanente which involves traveling up and down Northern CA for health fairs and other health related events.  I have been having severe fatigue, cognitive impairment (spelling, writing, oral communication, remembering locations, directions)lots of balance issues, vertigo, inability to walk, use of hands, so my doctor has me on short term disability till the end of the school year. I just wasn't producing at work and should have stopped earlier but declined to do so because I saw it is defeat.  I have been offered a full time teaching position in the private sector for this fall and want to take it, because it will be easier I believe to modify my own classroom vs moving from site to site everyday and trying to get things modified so I can function well. I am working with the counselor at my MS Chapter Office to learn about worksite modifications and she is giving me good ideas I think will work.
Hold on my brother don't give up, hold on my sister just look up. There is a master plan in store for you if you just make it through. The best is yet to come!


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/2/2007 3:29 PM (GMT -6)   

It seems like a lot of us with MS are what are popularly called "Type A" personalities: folks who like to be in charge, folks who like to have order in our lives, folks who like to make plans and carry them out, folks who won't take "no" for an answer, and for that matter, won't say "no" to things we're asked to do.

and MS is unpredictable.  And take control out of our hands. We can plan...but we can't guarantee that we can carry out those plans. And we have to learn to say "no", sometimes. And sometimes, say "no" a lot of the time.  And that's hard for us.

It's good that you're working out modifications for your work. I would think that indeed having your own classroom on a regular basis, where you know where things are, where you can set it up to suit your needs, and change things around when you want to or need to -- would be very helpful for you to be as productive as possible.  I'm sure the traveling around put a huge strain on you..I know it did on me.  I still do a bit of it, but on a very limited basis.  And it's good that you're talking with folks at your local MS chapter. I hope they'll continue to be helpful to you and your family.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 5/2/2007 3:58 PM (GMT -6)   
Butterfly,
If you ever want to talk my email is available. Just click on my name and my email address is there. I feel exactly like that. I am newly diagnosed with a young child too and i get where your coming from, totally.I too want to do alot of things that i cant seem to do right now, however, i am better than i was a year ago. things will fall into place. Email me if you like. Would love to talk to you.
Keep your chin up!
Lynn
Dx Dec 06, Rebif,44mcgs 3 x wk, Baclofen


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 5/2/2007 4:36 PM (GMT -6)   
Hi Butterfly,
 
    It's very hard dealing with a chronic illness and being a parent, especially of very young children.  There's a lot of guilt, sorry if that's the wrong word but that's the best way I can describe it, of wanting your children to experience things with you and then the fear of possibily not being able to later on.   If it makes you feel any better at all, it does get a little easier as the kids grow and begin to understand what's going on.  We kinda go with the flow now, do what we can when we can and the kids adapt are very understanding about it all.  Hang tough, things do work out no matter what. 
 
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/2/2007 10:10 PM (GMT -6)   

hey Stephanie,

I am sorry you are having such a hard time with this.  This is a really good thread.  I am so glad you posted this.  I can so relate. I am feeling pretty much the same way you are feeling.  I know uppitycats has given us many really good reasons for thinking rationally about this disease but I find myself struggling like you.  Feelings are feelings and we can't necessarily control them.  You are early in your dx as am I.  And I find myself struggling with how to deal with and think about this disease and how it relates to me.  I was determined to not let it become my identity and yet here it is and it is definitely part of my identity.  I struggle constantly with how much I should be thinking about MS.  I would love to talk to you more about this.  I would like to invite you to e-mail me if you are intersted in discussing this more.  Just click on my name and you will see my address.  No pressure, only if you want.

I am thinking of you and your struggles.  Keep us posted.  I am really interested and I care.

Love and prayers,

 


Gretchen
 
diagnosed: MS  July 2006
Treatment: copaxone, prayer, laughter, and positive thinking


angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 5/3/2007 2:00 AM (GMT -6)   
I feel your pain butterfly. I am not yet diagnosed but am just coming out of a flare ("working diagnosis of MS" ) that has left me basically bed-ridden for the last three month. We had to take my son out of preschool so that we could afford to have someone come and live with us to take care of my children. I have a three year old and 20 mos old.

Yes, I am a type A and yes, God has my attention now. I try to maintain the best possible attitude and am grateful to be feeling alot better right now, but since this is so new and so extreme, it's shocking me. It really is shocking. While I am not someone who has blue prints for my future set in stone, I am grieving about not being the "kind" of mom I thought I'd be. I know I'll adapt and we all will, and like all things in life I know it will grow us and bless us, but in the times that I am not that rational, I am hurting, scared, anxious and definitely feel that sense of urgency that you describe. ....A day at a time, right??....

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 5/3/2007 11:59 AM (GMT -6)   
Hey Stephanie

Gee, i can so relate to u on so many different levels. I think our situations are a bit different tho. My girls are older..12, 9 and 8..and i'm a stay at home mom. I chose not to return to work prior to my symptoms onset. It's good too...at my last job i was in a place of big responsibility and if i'd been there during the worst of my probs i'd prob have lost that job. I was never a type A personality as many here are, but do very much like knowing i can plan and carry out my plans. I can really understand tho, just how much ms has already taken from u. I was always a very active person. I had the nickname of little dynamo for a long time...then this hit. Not called that anymore. On the upside tho, i'm better....MUCH better. My symptoms come and go and i deal with them on a daily basis, but for the most part i'm mom and wife again and i'm very much a part of my family's life. A year ago that wasn't the case. I was so fatigued and so easily worn totally out. I had trouble walking due to balance probs. I could walk for sure, but just did so in very cautious way. My cognitive probs were quite present. Most obvious was my memory and mixing up words. Memory is still quite bad. Some word probs, but that all is better some days and worse others. I don't have the bad bal probs all the time anymore either. I found myself with probs even trying to peel a potato to prepare supper for my family. My hand would tighten so much and hurt. That's a lot better now too. So u see, it gets better. In the worst of this...during a flare or while dealing with things like fatigue...it's just so hard to believe it'll get better, but it will.

U'r children will find a way to adapt. It's so painful to see that they need to, but thank God they are able to. My girls just didn't get it for a long time. Why is mama sick all the time? Why don't u just get up mama? It's hard. U'r mind is so willing and so ready to jump up, yet u'r body won't let u. Angielov is so right...in time this will grow on everyone...we all get used to it...and in time u adapt and adjust..but until then what?? Well just as Angielov also said, u are scared and hurt and anxious and u wonder what the future holds for u. Well, the important day is today. U do all u can with today. If ur only able to sit and listen to u'r child read to u..then u do that and u enjoy every min of it. If tomorrow's today is better then u enjoy it for all it holds. Yes, one day at a time.

I too would welcome u to email anytime u'd like. I can understand u'r feelings and would be happy to be here for u if u need a shoulder.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 5/3/2007 4:12 PM (GMT -6)   
Having children makes any type of illness all the more difficult. I was diagnosed in December '06. My son is 19. He lives at home, goes to community college, works. He's still too young to be out on his own. And he couldn't afford school and an apartment on the money he makes delivering pizzas. Do I worry about him because of my MS? Yes, I do. I have taken off work more than I think is wise given the economy. If I lost my job I'd for sure lose my house. Social Security Disability won't pay the mortgage. Does worrying make the MS worse? Probably.

I think whoever said Type A personalities are susceptible to MS hit the nail on the head. This illness has made me slow down, reevaluate, take life one day at a time. I've had my moments of railing against the universe. This isn't how I pictured life at 55. I still feel young enough to be out whooping it up. Instead I'm headed for bed by 9:30 or 10:00. I think we become more sensitive to lost opportunities. I am thrilled to hear Uppitycats talk about traveling. I've only been on Rebif for three months. I'm still feeling my way through this whole process. I'm still hopeful for the future.

I've had two experiences in the last two months of unexpected deaths. One friend I saw at Church. Twenty-four hours later she was dead. The other was an acquaintenance. He left work with a headache on Wednesday. By Friday he was dead of an aneurysm. So, maybe MS has sharpened our awareness of just how fragile and precious life is. We need to live in the moment. Do what you feel is right for you, and your family.

Hope this rambling makes sense.
Rebif 44 mcg x 3; lyrica; ambien

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