How do you deal with your MS diagnosis?
By KellyGwen
@KellyGwen (193)
United States
June 20, 2010 9:45pm CST
I just commented on a bloggers post about how having MS "could be worse" but it's still pretty awful! It made me wonder how other people deal with having MS emotionally. How do you?
I went to college for horse training, I can't ride anymore. I used to be in bands (as a singer), I can't handle the late nights and the energy it takes to perform anymore (not to mention that I can't remember the lyrics!!) I used to be a part-time bouncer (just for fun)... now I'm a full-time stumbler!
I used to love hiking with my dogs, driving just for fun, working in the garden or the yard all day... There are SO many things I used to do! Now it just makes me tired thinking about it. I need AC and a nap or I turn into a pile of incoherent clumsy mush!
I guess it could be worse... but it sure is bad enough! I feel like a 70 year old retiree.. I feel like my life has been stolen. I didn't think I'd be so old so young!
If misery loves company, MS is ecstatic! There are a lot of us out here in this same leaky boat... Not that it makes it better...
I cry myself to sleep too often. A brave face is easy to have in the light of day, but in the quiet of 3am it just gets too overwhelming.
How do you deal?
1 person likes this
3 responses
@dawnald (85146)
• Shingle Springs, California
25 Jun 10
How do you deal with any debilitating condition? You just do somehow. Hopefully with the help of supportive friends and family. But there are up days, down days and everything in between.
Nope, I don't have MS, but I do have a couple of rather painful back conditions...
@KellyGwen (193)
• United States
25 Jun 10
Yeah, I guess you do have to just deal... but those "why me" moments happen pretty often, especially when you see other people your age doing things you know would knock you on your butt...
Thanks for your comment :)
1 person likes this
@dawnald (85146)
• Shingle Springs, California
25 Jun 10
I've had a few of those too, especially when my back was so bad that if I sat for an hour, it took me days to recover...
@KellyGwen (193)
• United States
26 Jun 10
I feel ya... my back is one of the "gifts" MS gives me... The other day my bf and I were down at our dock enjoying the afternoon... I made the mistake of walking on the dock... Not good when you have vertigo! I was "out" for the rest of the night. It was craptastic!
@pepcat (69)
• United States
2 Jul 10
Hey KG, I don't have MS, but my husband was diagnosed back in 2000. I cried when I found out because my uncle also had MS and was very unhappy. But, through the years, we have learned to adapt and he deals with it everyday. I know he would give just about anything not to have this diease. He counts himself lucky that it wasn't cancer, which has taken out some of his family. Don't isolate yourself with this! I know it's gets tiresome to deal with this, but if you know you have people you can talk to when it gets tough, it won't beat you down so hard. Take advantage of the free information and activities the local MS chapter has. Do you ever use any cooling materials like a vest, neck roll or stuff like that?
@pepcat (69)
• United States
4 Jul 10
Here is a link that talks about the different companies that sell the cooling vest and other products. http://ms.about.com/od/resources/tp/ms_cooling.htm
I just remembered, there is another organization, MSAA , www.msassociation.org,
that has a cooling equipment distribution program. You can apply for a free vest that can be worn on the inside or outside of clothing. Go to http://www.msaa.com/programs/cooling. Hope this helps.
.
@KellyGwen (193)
• United States
4 Jul 10
Hi Pep :) Thanks for commenting :)
Most of the time I just pretend I don't have it... I think most people think I'm just "lazy". I don't have any of the cooling things... I remember that there is a website out there to help MS'ers get those things, but I can't remember what it was!
I have considered applying for one of those scooters for people on Medicare... but I know I would feel so "lame" driving one of those around... It would be nice to have one when we go somewhere that I need to walk for more than 1/4 mile though... I go SO tired I can barely speak afterwords!! I guess I could "decorate" it with some paint and stickers... make it a little more "hip"... *shrug*
@brannray (132)
• United States
18 Jun 11
Having MS is something that is extremely difficult to deal with. I was diagnosed in 2005 the week of my 18th birthday *happy birthday to me! lol* but, I do try to just take it one day at a time. We have good days and bad days. However, unfortunately it's actually usually we have bad days, and worse days. But, I keep waiting for someone to come along with a miracle to cure us all. That would be amazing, wouldn't it? Sigh.
I go through a lot of the same things you go through. Remembering all the things we could once do that now seem just like a past life, or a dream you once had, because just the thought of doing it now is exhausting, depressing, etc.
I hate to whine on your discussion, I usually keep everything bottled in because I hate to show my weak side, but I. Want you to know you're not alone. Yhere are too many of us going though this.
