DH with MS need some positive thoughts

[pooh4evr]

Well I guess I just need to vent a little Dh was diagnoised almost 2 yrs ago with MS- he really has been doing very well - but last week he started with I guess a minor flare. He has been taking IV steroids daily since last Thursday, and sleeping about 10 hours - he pretty much goes to work, come home eats dinner says Hi to the kids and goes to bed. I am having a harder time this time with everything, I feel sad, overwhelmed and lost- I know that probably sounds terrible - I can not imagine how he feels and how scared he is for the future - He never discuses really how he feels at all until he feels really bad- i don't know how to help him anymore- I try to talk to him but he doesn't say much - it is so frustruating to just watch someone give up who has so much to fight for. I hope he feels better in the next few days, You know the hardest thing about all of this is seeing everything we have worked for, all the plans we made go down the drain because of something we can't control, din't ask for don't want and dont deserve. So just some positive thought sent our way would be great!
Thanks,
Stephanie

 

[saveaquarter]

My husband has MS as well, I know how painful it can be to see. He has some days when he can't even walk, and his motor skills are really suffering lately. There's so much he wants to do, and so much of it is becoming less and less possible as time goes on. It breaks my heart. He used to be an amazing baseball player, was on his college's track team, and was strong and active. Now he uses a cane.

He also never talks to me about it, and hides it until it's completely unbearable. There are so many times when I just have no idea what to do anymore.

If you'd like to have someone to vent to who gets it, send me a PM, I'll give you my email address. It'd be so nice to talk to someone in the same situation. That helplessness is so painful and frustrating. I've been feeling it a lot lately too. I feel like I should have something more comforting to say, but honestly, it's brought tears to my eyes knowing that someone else out there is in this place and understands.

 

[Tiggerish]

Try to remember that even if he does not verbalize it, he feels your care, concern and love. As for the ten hours of sleep, MS fatigue is the hardest thing to explain. People think they understand tired but this crazy MS fatigue stuff is so beyond that. I know because I too have MS. Hang in there.

 

[pooh4evr]

Thank you both for your posts- it does mean so much to find another person to talk or type to about stuff like this- I hope I didn't sound mean or anything about the sleeping I know he needs it, and it does make a difference with his health and mood - The girls are getting old enough to see it too (almost 9, 6 and 3) well at least the older 2 - and that is what really breaks my heart - he wants to do so much for them, and with them but right now until this one passes he can't. When wew were in WDW in Dec- he felt great almost normal he said, not a pain or tingle just great! Then we can home and with all the craziness of the holidays, our youngest DD's birthday, and working too many days on a row on call (he is a DR) with very little sleep then getting a sinus infection- it was too much- and so here we are. I know it will get better and he will continue to fight but sometimes it gets to be alot! I lost my dad at a very young age and I am determined not to let my girls go through the same thing in any way.

 

[Tiggerish]

You were not mean and you were not inconsiderate in your posting. Every time I have an infection, I get flare so his sinus infection probably is not helping thing.

By the way, I think it is extremely difficult for family to cope with the stresses of having someone they love have MS but I have found the children adapt the best and seem to roll with it better than many adults.

Your family wants you to get better. But there is no cure for MS and darn little treatment.

Your family wants to understand what is happening to you. But your symptoms and abilities change all the time and many times you do not understand what is happening or cannot explain it.

Your family wants to help you so you have it easier. You want to do as much as possible for yourself, even if it looks awkward or takes more time or seems to make your life more difficult.

Your family thinks you are giving up. But you are conserving your energy for the important battles, like getting to work or to the kid's school play.