Feeling Isolated

[monotreme]

As most of you know, my husband Craig has PPMS.  He is working and functioning as best as he can, but the disease is progressing and he is getting more complications.  This has been a four year struggle to get a diagnosis (he was diagnosed in August 2008) and I guess I am feeling the pressure more lately.

I am finding that the more I try to do "normal" things, the more I feel different from other people.  I have tried to take fun classes like dance and aerobics etc, but lately the stark reality of how my life is changing and is different than these people makes me feel worse.  Instead of the classes and activities being a break in my routine, they become a stark reminder of all of our troubles,   And how my life probably won't ever be "normal" again.  

I went to a party with other homeschool mothers and their kids a few weeks ago.  They were talking about this trip they took, or different hikes in the state parks etc, and I realized that in no way can our family do these things.  Craig can't even walk in a park locally.  He can't finish the boardwalk in Rehoboth Beach.  He can't jump any more to play basketball with our kids.  Last summer, he would go in the house and throw up if the pool water was too warm.  And the best he can do is swim using only his arms.

So...how do all of you cope with your disabilities without feeling isolated and different from others?  I called the DE  MS society to ask if they have a support group for spouses of people with MS.  Their answer was "no".  They said that they get many requests for it, but have never gone ahead and formed one.  

MS seems to be such a life altering disease.   How do you all cope?  Do any of you get more sad when you try to do things with people who arent't effected by disabling diseases?  I am frustrated with the lack of support.  There are support groups for families of Alzheimer disease, cancer etc, and nothing for families with a member who has MS.

Thanks for listening.
Elaine

[vizslagal]

As a mother of a child with a disability, I have come to the knowledge that you can't keep comparing yourself to other families.  It just sets you up for disappointment and more greiving. Because that is exactly what you are going through.  You are mourning the loss of a cure and a return to your old way of doing things.  You have to find a new "normal" for your family.  Concentrate on what you CAN do rather what you CAN NOT.  Be gentle with yourself during your period of mourning and adjustment.  Like all grief it takes time.  As a mother I find more understanding from families with the same problems.  Try to find a spouses support group.  It probably doesn't even have to be specific for MS but any chronic illness support group.


Yvette

[biowham]

Elaine, you've lost a lot, and as you probably know, you have to take time to grieve for and accept (eventually) what you've lost even as you try to adjust to what you have now. This is a huge loss...I can sympathize with it somewhat because the things that are hard on you would similarly be hard for us. I'm not even diagnosed with anything, but I've caught myself trying to look ahead 10 or 20 years, trying to imagine if I'll be restricted to the flat, wheelchair accessible routes in national parks where we've hiked hundreds of miles together.

Everyone who's posted has said such good things, so I don't really have anything to add except that it's probably the best route NOT to try to shove it away or tamp it down with activity, but to really open your arms to the loss, take it in, let it hit you, and work your way through it.

You and your family are in my thoughts.

Bio

[Sarahsmom46]

Isolation is one of the things that scares me the most for my family.  Being the patient is hard enough, but what's even harder is being a caregiver.    Since there are limited at best resources in your area, could you see yourself starting a group on your own?  Even starting with a couple of people meeting for coffee is how a lot of support groups get started.  

Thinking of you both,

Julie

[monotreme]

Yes, I think that I am mourning the loss of the husband and life I had, and coming to terms with the life that's ahead of me.  I will take all of your suggestions to heart.  I can call a psychologist I know to get a referral for someone to help me with this.

Thanks again!!
Elaine

[Fluffysmom]

I'm adding my love and prayers and hope for you finding a way to feel better to those of all the rest.

I'm so sorry that life really stinks sometimes.

I'm not even diagnosed, but I've felt isolated by my symptoms; dizziness that makes it hard to drive, fatigue that makes it hard to make plans - I had to miss a concert that I'd been looking forward to for a month because I just could not go and sit up and smile and enjoy the music.

I've pushed myself to go to soccer games, to a potluck, and to visit some friends after they made a trip to Africa, etc.  It was hard to stay focused and make conversation, but I always felt like I had just climbed a mountain when I successfully had a good time, even if I had to make allowances for my tremors, dizziness, foggy noggin, pain, and so on.

I have had a trial rx of Provigil, which made an amazing difference in what I can accomplish.  I just got back from several days in Disneyland with my best friend's daughter, son-in-law, and three grandsons where I had a great time.

Today I got a notice in the mail from my insurance that they absolutely will not cover Provigil.  I feel like my life is being yanked back away from me.  A month's Rx would cost from around $400 to $600, depending on what dosage I need.

Compared to what Craig is going through, my problems seem pretty small to me, but they've affected my life and the lives of my friends profoundly.

I hope that you find a way to make life sweeter again.  Keep searching for a support group; maybe one for people whose lives area affected by a variety of disabling diseases if there isn't a specific  one for MS families and friends.  If you don't have a therapist, find one that helps you, really helps you find a way to live your life to the fullest.

And never, ever forget that all of us here love and appreciate you and wish we were closer to you so we could help you accept a new definition of normal and give you hugs and make you laugh until your "smile" muscles hurt.  

Be well,

Kathy

[essdipity]

Gosh, I'm sorry this is hitting you so hard at this point. I'm thinking that you directed so much emotional energy for years towards getting Craig a diagnosis, and now that that's done, you have time to experience all the feelings that probably were getting crowded out before. You have so much on your plate anyway, with a big family and kids with special needs. There's basically no time for Elaine, and no way that Elaine's family can be the way it was. This is really tough, and you do need help with it.

I think Sunny's response to this post is wonderful. She's right--you just can't somehow make Craig happy, so you shouldn't beat up on yourself for the times that he's blue. She's also right that although you can't do many of the old things as a family, you can create new family traditions that will work. What about a family game night once a week, for example? And I agree that a few sessions with a family counselor might really pay off. The counselor could help you all understand better what roles you can play and which you can't, all without blaming anyone else. You have tons of pressure, with anxieties coming at you from all sides. It would be nice to let a professional help you create a framework that will work for everyone, and take some of the intensity off you.

Let's plan a long phone conversation sometime soon. As you know, I'm someone who understands.

ess

[Wobbly]

Hi there, why do they not have a support group ?  It doesn't make sense does it..

we all know how you feel as we feel the same way...that our lives have been changed and life is not fair.. but we must deal with what is happening....

I myself want to tell my husband he deserves more and a better life then with me..?  I can't do anything like I used too.. it's only been a couple of years.. but I worry that he is not happy.

then I'm afraid to tell him he deserves more, incase he agrees...:(((
so I myself hold in alot of feelings that I would love to let out...but am afraid too.

I can talk but I can't seem to do it... but Communication is a good thing...

take care
we are here for you
wobbly
undx

[OperaMBA]

I can understand your frustration and sense of isolation.

My thoughts and prayers are with you and your family.

Richard

[doni54]

Hi Elaine,

I have always had such admiration for you, and often wished I had someone close to me who cared as much.

I can't say anything more than what everyone else has said, as I agree with them.  I will say that I'm glad you told us how you are feeling.

I pray everyday for you and Craig and your children.  I hope you can find a support group or therapist close to you, so that you can feel better.

Take care of yourself, Elaine, you are such a very special person and we here all love you and are here for you, always.

Hugs,
doni

[monotreme]

Thank you for your support!!!!  I know I'll get through this, but it is harder than I once thought.  
Elaine

[Sunnytoday]

Elaine... I'm glad you feel free to vent here, you know I was worried about you? I do very much hope you find support for youself, and do please consider counseling or therapy as well. I'm of course not saying that you are not handeling this well, you are handleing this amazingly, I'm just saying that therapy may give you more coping mechanisms than you currently have. Maybe. Not sure about that, though. :) Here, I've heard about a center that counsels people and families that have diesease, perhaps you could look for something like that.

I personally, love to be with folks who are "normal", even though it's hard at times...when I can't join in the games or such. But then, I think I'm different that some "un-normal folks".... I've always pushed myself as far as possible, and getting out with my friends and family helps me feel sane and keep smiling. :)

Please, hang in there, but at the same time, remember, you can not be Craig's total emotional reason to be happy, or how should I say... try to be "make him ok". I know my parents try to do that sometimes, and it wears them out. Realize that he has to take control of how he feels and if he is down emotionally or feeling bad one day, it is not your responsibility to make him happy all the time or feel well (of course, sometimes that is very wonderful if you do!). If you try to all the time, you will just wear out!!!

One more tip, create new family hobbies that will be 'ok' for craig to do. I know this may be a stretch, since it sounds like you all enjoyed active, outdoor things, BUT.... think of inside things that would work, and create a closet with them in, that way when Craig is having either a good day, or you plan an evening, you can go and pull out a few fun things to do that are special, or you can go a few places that aren't too tiring for Craig. My family has done this and we enjoy this so much. I've also adapted and use a wheelchair and braces so I can go on those fun walks in the park and go shopping with my friends instead of just giving that up, becuase i want to enjoy every minute of life, and that of course is a personal decision....

And lastly, I've decided that life will never be normal, and yes, i cry over that. And I think that's ok to, as long as I smile later on in the day.
many ((((hugs))))
You inspire me.
~Sunnytoday~

[Lulu54]

Hi Elaine,
It is surprising to find that there is no support group for you locally - I know the MS board for the UK has a caregivers board separate and you might want to sign in there.  The frustration is the time difference makes it hard to interact in real time with anyone there and most of the participants are full of that British reserve - us Americans are so much more outspoken.  But anyway check it out - it might be a good resource for you.  If you need the address let me know.

I've seen caregivers with their family members in my neuro's lobby - I am constantly amazed at the depth of love and compassion the human soul is capable of feeling and exhibiting.  I know you fit in that group of special people too.  

I imagine it would be very easy to become resentful of "us" if you weren't a very special person.  I watched my uncle make my aunt who had MS miserable the last 20 years of their marriage.  She had the last laugh - he died first and she lived another 10+ years without him.

Please keep looking for support for yourself, even if it is private therapy.  It sounds like you could use an objective ear to help you find your way with this.  

With lots of love and admiration for you and all caregivers,
Lulu

[sllowe]

Super Elaine -

This time had to come.  Look at all of what you have been though.  I wonder how you get through, often.

There SHOULD be support groups for spouses.  I had no clue there weren't.  I went to 1 meeting sponsored by the society, and there was a wonderful woman there who was a therapist. I spoke with her afterward because she said so many things that hit home to me and I thought it would be great to bring my family to her, but I was specifically thinking of my husband.

Gosh Elaine, I don't even know what to say in regards to the lack of support and living w/out it. Sometimes I absolutely want to scream, and in the next breath I beat myself up over the thought of thinking about myself.  I'm probably not the best one to give advice since I flip flop w/my thoughts, but I thought you might need company in that place you are in right now.

Thinking of you and always here to listen,
Shell