Stolen Life

[Tigergal]

Well it has been almost a month since we found out that my husband has MS. I have had some good days which has surprised me but today happens to be a very bad day. I was doing great today because we got an earlier appt with the neurologist that we are changing to. Then my 4 year old had meet the teacher night at her school and my husband had the off balance feeling he gets so often when he is around alot of people. After we left he told me that he did not know if he would be able to go to the first footbal game that is this Saturday because he does not think he can be around all of the people there.

Please understand that I am not mad that he can't go to a football game...this is just something we do together every year and there really is nothing else we do together. We love our team and have season tickets. I look forward to this every year because I get to be with my husband, no kids and just us. I am devestated. he has never been a big talker but now he barely communicates anything to me. I spend so much time making appts for him and calling drs for referrals and researching MS. I just feel that our lives are over and I had just started trying to tell myself that MS was not going to control our lives.

I am so sad...I just want something to end my life. I want to leave this place so that I do not have to deal with this. It is so unfair that our lives are being robbed. I just do not know how to deal with these feelings. I cannot afford to go to a therapist nor do I want to. People say it could be worse and the way my life is I am sure it will get worse. Apparently we are bad people and we are being punished!

MS Sucks!

2 words...MS Sucks! That's really what it boils down to. I don't have any infinite words of wisdom for you, but what I can tell you is that it gets a little easier with time. Wait a minute, no, I'm not sure if easier is the best word to use.

It's not easy to see your husband struggle to do something that was simple for him to do a few weeks ago. No, it's not easy to see the cognitive changes that take place or the exhaustion that's in their eyes from the moment they get out of bed in the morning. Nothing about this darn disease is easy. But with time, you find ways to cope and deal with the changes that this crappy disease dishes out. And when you get there, you also find things that you still like to do together or you will find new things to do together.

It's so hard to not let MS consume you, been there, done that. But we can only control what we can. Be there for your husband, not as his mother(making appointments, etc) , but as his wife. Discover new things together and grow. Hang in there!

[kif8skip]

time to re-group

Hi Tigergal;

My man has also been recently rx'd with MS as well. It IS a very hard thing to wrap your head around , as their partner. I have only been with my man for 3 1/2 years , and in that time there have been 2 back surgeries/ 2 eye surgeries , and now the MS.....

I found a nice website with some tips for us caregivers and one of the things they suggested was for us to force ourselves to write a "grateful list" - even for the little things in life . I have done it for 2 days now and it does help me.

Another thing I am working on is acceptance - none of us has done anything "wrong" or called this to us....it is what it is.....acceptance .......while I am busy working on acceptance I have also had some very long loud crying sessions....

I hope you can go to the game this weekend , however if he does not feel comfortable going ( he may not feel safe walking , being out for a long time) perhaps just the two of you can do something special more in his comfort zone.

Changes like this are very hard indeed and my heart goes out to you both as you adjust to your new boundary's in this life...........

[Windwalker]

After we left he told me that he did not know if he would be able to go to the first football game that is this Saturday because he does not think he can be around all of the people there.

Please understand that I am not mad that he can't go to a football game...this is just something we do together every year and there really is nothing else we do together. We love our team and have season tickets. I look forward to this every year because I get to be with my husband, no kids and just us. I am devestated.

From your alias, I'm going to guess Clemson. Do fans still distribute $2 bills with paw prints wherever they go.
FSU Grad 1990. College football games are insane...in a good way...I can understand your husband's hesitance.

I am so sad...I just want something to end my life. I want to leave this place so that I do not have to deal with this. It is so unfair that our lives are being robbed. I just do not know how to deal with these feelings. I cannot afford to go to a therapist nor do I want to. People say it could be worse and the way my life is I am sure it will get worse. Apparently we are bad people and we are being punished!

Just stop it! I wish I could just hug you and convince you things are not as bad as you feel they are right now. I am Windwalker...not Soloman. I don't have the answers but am very concerned for you and especially your husband. Dealing with MS is a marathon, not a sprint. You are running as fast as you can and if you don't slow down...you will burn out long before the finish line.

[Scooter24]

Might I suggest a wheelchair for the games and other events with large groups of people, most places like that have a section for handicapped people and wheel chairs so he may not feel so out of place using it. I am sure there is a local medical equipment co or drug store that you could rent one from for a few days or check with your local ambulance group as sometimes they have things like that you can borrow from them.

You need to quit thinking you did something for him to get MS, you didn't, as others have said you need to and will adapt to some limitations and the fact that he has it.

[Tawanda]

Hang in there, it gets better

Well it has been almost a month since we found out that my husband has MS.

Please re-read this first sentence of your post. This is SO FRESH that you can't be anything but shell-shocked at the moment. I would find it really stange if you WERE O.K. with this diagnosis this fresh out of the starting gate. I refer to my first year after diagnosis as "the lost year". My mother also had M.S., so you can imagine my bitterness. I tell you from the heart, that if things got better for me, things will get better for you and hubbie, too. Remember life is a journey and not a destination. Most of us here have been in you/your husband's shoes, so you are in the right place if you are seeking understanding and support.

[LullabyJD]

I hope this isn't out of line, and please take my comments with the understanding that I am newly diagnosed myself, but you might find yourself more able to cope if you alter your outlook.

Right now, this seems like the worst thing ever, and I get that. I'm a 31 year old mother of 3 who owns her own law firm, part time waitresses for fun, and coached soccer up until this junk started. My whole life is changing.

But here's the thing. Life has CHANGED, it has not ENDED. Everyone has things they must endure in their lives. No one has a perfect life. Your husband's lot to endure is this disease. For most of us, it can be brought under control, and our quality of life can continue to be good. You've got to figure out a way to put a positive spin on this, for his sake. After all, it is him who has been hit with having a body that doesn't do what a body is supposed to do. He needs you to be a rock that he can depend on. Not an appointment setter, necessarily, but an emotionally grounding and loving supporter. I don't know what I'd do right now if my husband wasn't holding it together, because so much of my strength is drawn from him and his outlook.

You're holding on to a whole lot of "can't"s and not focusing on all the "still can"s. Cherish the good moments and slog through the worst, just like everyone else on earth.

Obviously you've got a lot to work through. It's a big shock to have so many plans seemingly wiped out. But give your household some time to adjust to the challenges before you consign yourselves to misery. Nearly everything is still possible, even if it may seem to be more exhausting or necessitate more planning and less spontaneity.

[Deer In Headlights]

2 years

It's only been a month, settle down, take a deep breath. Things are different and will be, they are for me. I try to laugh at things that are different. I definitely walk like a drunk, and crowds are tough to walk in or around.

I teach Middle School and I'm a Special Ed Teacher. I walk to classes to work with different students and I try to wait until the students are in class because it's difficult to navigate through all the kids.

Try to go a little earlier to sit down without all of the minefields in his way. Like they say, everyone is different and you need to be his rock. I think it's tough for you, but I know it's tough on him.

[nightflyer]

I know this is tough on you both. MS does suck!!! I've had it for 15 yrs....married the past 11 yrs. Yeah, we both flip out over situations that we can't cope with at the time. We scrape each other off the ceiling and keep going. The disease "is what it is."

He's probably scared, angry, feeling guilty for having brought this into your life and worries about you too yet and what the future will bring. Talk to each other about your concerns and fears and you can get through it all together.

[empirerecs]

Dear Tigergal -

I hope you are listening to all the good advice and letting it sink in a little. This is, in fact, very new for you and your family and there is a grieving period. Please don't think you did something wrong to get this disease. It's just not the way things work. I'm not one of those believers that says this kind of crap only makes you stronger either - but I know that I didn't do anything wrong to get this disease and neither did you or your husband.

It's going to be difficult for your husband to go to the games and that is sad and upsetting but what if you were to sell the season tickets and buy a big screen t.v. with surround sound and have your own football dates at home?? could a family member or friend watch the kids so you and your husband can share the day together in a less stressfull environment?? I know it's not the same, but at least you would have your time together doing something you both enjoy. And you can get the season tickets next year when you both have had the time to adjust to a new way of life together.

please take care of yourself. I think every person that deals with this disease or has a spouse or family member dealing with it goes through the same emotions, you aren't alone. Talk to the neurologist about how you feel, with or without your husband there. He/She may be able to answer some of your questions and give you some ideas how to handle the things you are having to do now.

[Sdickerson1]

About his off balance feeling around crowds, I get that too.... I went to meet the teacher in a w/c... My daughter is in band so I go to ball games early and get my seat (use padded stadium chair even though I still have back pain, knee pain and swelling) I am determined being Mom is what MS will Not stop me from!!!!!! My family thinks I over do it going to the games but I will not let her down!!! I take my pain meds and put extra in my pocket

At church on wednesday night, I can't eat in the dining room so I eat before or after or have my kids help me.... Last week people noticed my fear and one gentleman(friend) took my hand and another took my tray.... My kids made sure I had what I needed and I did not leave till the crowd left even though the tables all around bother my balance and sight

There are ways, u just have to find them and I fight the MS if it is about my kids.... W/c got me to many basketball games last yr..... Good luck!!! Y'all can do it!!

[Spydre]

Tigergal,

I had to think long and hard about how to reply to your post. I'm not the "caretaker", I'm the one WITH MS.

First let me say, don't shoulder too much of the burden yourself - let him take responsibility for making his doctor's appointments and calling doctors for referrals. As long as you do it for him, he won't think he needs to try - but trying to communicate through you - no one can describe his symptoms better than he can. I know if my husband were calling my doctor's offices for me to get me appointments, or to deal with a symptoms, or what have you, what I say and what I MEAN may not make it across to your doctor.

As far as the football game - if you want to keep it being "your thing" the wheelchair option or a cane sounds best. Call the season ticket office and see if they can transfer your seats to the handicapped section if you decide to go with a wheelchair. That way you don't have to give up your "just for you two" time.

The best way to keep this disease, whether it only gets a little worse, or whether it gets a lot worse, from "stealing your lives", in your words, is to start planning. Yes, there are things that I have not been able to do because of my MS, but I also have things in place so that is minimized. I have a cooling vest and a cooling scarf, so unless the temperature is near 100, I'm still able to go out in the heat for short times. I keep a cane on-hand for when I have trouble walking or when I'm dizzy - and for future reference, if he gets any kind of regular medical infection, his MS symptoms can come up seeming like a full fledged flair.

I recall your husband is still working, so I would just get a wc or cane for the cases where you know he's going to have problems - like when you know he's going to be around a lot of people, so he may have balance issues - use the w/c just in case, rather than putting pressure on him to keep his balance.

MS doesn't HAVE to control your life - only if you let it. More particularly only if the both of you let it. And it could very well be that your husband is thinking, "I don't want to go out in front of a ton of people like this, what if I have a problem?" That was a very common thought for me, especially when I'm flaring. I don't feel well, I don't want to see people, and I don't want people to see what is going on. REmember, both you and your husband are still in the shock phase. If he doesn't want to try the wheelchair option or the cane now, give him a few weeks - he may decide to go to a game in his own time, either without the aid of a w/c or cane, or with one - whichever he makes peace with. You can also get there early, and wait a few minutes after the rush of humanity has left before you leave to make it easier.

I would lay off the MS research for now. There's having enough knowledge of the disease, and having too much knowledge - enough to scare you, that you aren't ready for yet. No one knows the path that your husband's MS will take. Some people progress rapidly, and some people don't. Some people's lives don't get impacted as much as others - I know you want to prepare yourself for what COULD happen, but you may be convincing yourself of what WILL happen.

I know you say you can't afford a therapist, and wouldn't go to one anyway - but you clearly need it if you are nearly suicidal over this. And you need to grieve. When I see my therapist my MS is one of the things we talk about - still 3 years after my diagnosis.

As far as your last comment - of course you aren't being punished. If MS was dealt out only to the bad people, a lot more people would have it, and a lot of people who do have it wouldn't.