in desperate need of some advice

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tingles
New Member


Date Joined Sep 2006
Total Posts : 8
   Posted 9/27/2006 3:49 PM (GMT -7)   
Hi everyone! I was diagnosed with MS in April (I was 24 at the time), and am still adjusting and trying to come to terms with this. I know it probably seems like I'm whining, but I feel like my entire life has just spun out of control. I had my life all figured out -- I was engaged, bought a house with my fiance, got an awesome job, so the diagnosis came completely out of left field. I've tried to put on a really positive face for my family and friends because I don't want to worry them, but the reality is that I'm falling apart, and I find that because I try to shield everyone from my true feelings I really have no one to talk to and am continuously holding everything in. I suddenly feel like I am a stranger in my own life -- it's just so much to take in! My symptoms are relatively mild right now (except for the fatigue, which is horrible), so I guess I'm dealing more with the shock of this diagnosis than anything else. I'm also having a really hard time adjusting to the treatments. I've been on Betaseron since the end of June, and just can't seem to get used to the injections! Does anyone have any advice? Do these things just get easier with time??? I would love to hear your thoughts!

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 9/27/2006 4:14 PM (GMT -7)   
Welcome tingles!
 
My you are in a wonderful time in your life, try to enjoy it.  MS (or any chronic illness) can really be hard to except and adjust to.  It takes patience and time.
 
I am still getting used to having MS and I was diagnosed last november!  You will have good days and bad ones but hopefully the good ones will outweigh the bad. 
 
Injections are a very hard thing to adjust to but you will...I promise.  You may or may not ever get to where you have no side effects but at least you'll know what to expect and know it will pass.
 
Continue to keep track of your symptoms in a daily log that you can take to your doc and don't be afraid to ask questions and report new or worstening symptoms.
 
HW is a great support and we are glad to offer an ear when needed! :-)
Michelle ><>
 
Don't be so busy doing good
that you neglect to do what's right!


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/27/2006 4:47 PM (GMT -7)   

I'm so sorry that at your young age you have to deal with this...or any other chronic illness!

Certainly it was before your time, but it was one of the Beatles who famously said, "Life happens, when you're making other plans..."  Lots of people, especially at your age, figure out their lives..

and then things happen.  Things like:  Jobs don't work out, natural disasters strike...or like you, a chronic illness happens.  And, after a time of anger and grief, you'll find that you go on living, just not quite how you imagined it, but living OK, and doing OK and getting on with your life.

But it will take time.  You've had a lot to deal with in a short period of time, and you need to give yourself permission to grieve and be angry..and adjust to your meds.  Yes, injecting the Betaseron will get easier in time.  I always remind myself that my friend, who has diabetes, uses the same size needle I do, to inject her insulin -- several times a day, not just every-other-night, like me.  So I watch her, and then my little injection doesn't seem so awful, most of the time (I've been on Betaseron for 13 or more years, now).

Don't be afraid to talk to your family and friends. If you haven't already, go over to the National Multiple Sclerosis web site, at www.nmss.org and do some reading. There are things there that you can download that can help you explain to your family what you're dealing with.  They may well prove to be a valuable source of strength and help for you, as you come to deal with all of this.

And don't hesitate to come back here, and ask questions.  We'll try to help.

 


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


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/27/2006 6:44 PM (GMT -7)   
Hi Tingles,

Welcome to Healing Well. I'm so sorry you have to deal with all this. Give yourself some time to adjust to things and know that you don't have to take all this on by yourself. Your friends and family may never completely understand what you are going through since MS has so many invisible symptoms, but at least let them try to help and support you when you need them.

The National MS Society website Uppity mentioned has a wealth of information and there is also a section there where you can find where the closest chapter is to you. They do offer support groups there and of course we will always be here for you if you need us too.

Fatigue is probably the most troublesome symptom for most. You didn't say whether you were on any meds for that but if not, and if it is interfering with your daily activities, there are meds available to help. Provigil seems to be the most popular right now, but there are others.

Come back and let us know how you are doing, and take care of yourself.

Kimber
 
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got better things to do
Regular Member


Date Joined Jan 2006
Total Posts : 176
   Posted 9/28/2006 3:22 AM (GMT -7)   
Hi Tingles,
I to was dxed in march of this year,I started on copaxone and then switched to avonex.I have to say that the side effects of avonex have sure packed a punch with me.The only thing that has helped me get thru the diagnosis and the medication side effects was meeting a woderful person that also has MS.She has helped me get thru some very bad times and she is always there to listen to me no matter how bad she feels.I can honestly say that if it were not for her I would have done gave up on the avonex,she pushes me and gives me that little nudge when I mention that the side effects just are not worth it anymore.

Take care and keep us updated
Just when I was getting used to yesterday......Along came today.
 
             
~~LIFE~~


tingles
New Member


Date Joined Sep 2006
Total Posts : 8
   Posted 9/28/2006 4:02 AM (GMT -7)   
Wow - you guys are great. I can't thank you enough for taking the time and putting so much thought in your replies. It's extremely comforting to hear from people who truly understand and who have not only been through some of the same things, but also managed to move past them. Thanks again for your advice and encouragement...

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/28/2006 8:08 AM (GMT -7)   
Hey Tingles

I can't offer u any input on the med or even acceptance of MS (not dx'd), but i wanted to let u know i'm here rooting for u and praying for u'r well-being. I know it must be tremendous to have to accept something such as ms, but i also know that u find strength inside u'rself...and when u feel u've exhausted that inner strength, u come here or to other friends and u lean. Please lean all u need and want and know u'r far from alone.

rhonda

gaia247
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/2/2006 6:33 PM (GMT -7)   
Hi..I just joined the group today and saw your posting...I was diagnosed when I was 28 and I am now 36.  I have bee luck and have only had a few exacerbations...only one of which kept me from working for 5 weeks...MS is not a dealth sentence...while there is no cure...the symptoms are random and there does not seem to be a set path on where you will end up...which is good...I have 3 boys..teach full time...and have a full and happy life....my problem is that I do so well I forget I have MS and then I relaspe and start the whole process of getting involved in my health...don't let this happen...keep researching....eat well...and know that you can handle what life deals you..peace
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