Have you been forgotten?

[carriefromMI]

They forgot about me.
I had my first MS symptoms and worst attack while living out of my home state temporarily. Therefore my family and friends never saw me at my worst. My inability to walk at 30 yrs old. My weakness and pain so bad I cried at night. Luckily I had a loyal boyfriend (now husband) who saw it all and saw me through it all.

I moved back home to my home state 4 months after it started. I regained my strength and walking ability by then and my pain was minimal. I was still easily fatigued so my family jumped in to help me unpack. They were there for me when I needed help.

Over the next 13 years I had minor attacks and one major one after the birth of my second child. After a few years being relapse free, I am in the midst of what I would call my 3rd worst attack working its way up to being my second worst attack. (MRI results pending). I'm in pain and more exhausted then ever. Some days I don't get out of bed except to get my kids off to school. Tomorrow I will suck it up and put on a brave face and pretend I am much better than I am. This will allow my family to continue to forget I have MS and not be burdened by their sympathy for me.

Today I wish they wouldn't forget. I wish they would take my kids somewhere so I could nap. I wish they would bring dinner so I don't have to serve hot dogs or chicken nuggets again because I'm too tired to cook a real meal and don't have the money for Carryout. I wish they would wash my laundry. I wish I didn't have to ask because my stubborn self won't ask and because times I have asked were left with excuses. I wish they could see how hard this is emotionally let alone physically. Do they care or do they prefer to not know? I think it's easier for them to not think about it and what it must be like. To ignore. To pretend because I pretend. Today I wish they wouldn't forget about me. (Thanks for allowing me to vent)

[DogMa]

I'm sorry you are not feeling well, both physically and emotionally. I know it's hard to juggle your MS symptoms along with your daily life. I wish I could help, but I don't live near you. I hope just knowing that someone hears you, really hears you, will help somehow. Hopefully you'll be able to enjoy Thanksgiving and the day will mark the beginning of an upswing in your life.

I've been there, and I'm pulling for you!

[loopey]

I understand how you feel. Sometimes I see that my struggles are too emotionally difficult for some members of my family to cope with so they try to ignore it. That is when I come here and get it off my chest. It does help because everyone here can relate and they know what it is really like.

I hope you start to feel better soon, I really do.

[hunterd]

sometimes the only people that understand are those going through the exact same things ( in other words, those of us with MS). For instance, it is Thanksgiving day and here I sit by myself because my sister in-laws house is not handicap accessible and I cannot get in. It is not the cooking I miss, it is the camaraderie and friendship.

To some extent, others only see what they want to see, and an "unhealthy" person is not it. I have what I call "ttwo circles". One is my insight circle, the one that is closest to me, they are the ones that are few in number but no matter how IM feeling they take an interest. The other is my "outside circle" and they are people that I call friends, but they are more like acquaintances. On days that I am not feeling well I know IM not going to hear from them.

It is also this group of people that comprise my "outside circle" that bring me the most sorrow and heartache. When I was younger and "not broken" my outside circle was much smaller and my inside circle much larger. It is just my opinion that many of our heartaches stem from the fact that the bond of friendship has slowl eroded away.

FWIW, I have been in your shoes and it is never an enviable position. Sending you cyber hugs!

[Jules A]

Try not to blame them, everyone is so involved in their own lives that it is rare to take the time to think of others let alone find the time to help out especially with something relentless like MS that it continues for decades.

I expect nothing, get nothing, and that seems to be a decent strategy for me to cope. I'm glad we have this board here so we don't feel so alone.

[VikingKitty]

(((Carrie))) -- that's a hug for you

MS to me is a double-edged sword - I want to hide what I'm going through as much as I can from my loved ones (and sometimes myself psychologically) but on the other hand, I wish people knew and could understand what I go through with the MS. I don't want people to feel bad for me but I wish they totally understood. But like others have said, the only ones that truly understand are the others that have the disease.

I understand the emotional pain....that's one of the "invisible" parts of MS - just like people can't "see" that I can only feel about 50% in my feet from a flare I had 5 years ago........I'm sure your family cares.

[msgijo]

sometimes the only people that understand are those going through the exact same things ( in other words, those of us with MS). ....

My husband has seen some of my 'worse' - not all but some. He has always attempted to understand, but how can he when I cant find words to describe it? In the middle of October this year he had a brain hemorrhage - finally dx'ed with AVM. And oh, by the way he also has an aneurysm. Since then he has experienced many of the symptoms I have been trying to explain to him for years - forgetting things, problems with vision, getting "lost" in familiar places, being exhausted from doing nothing and he has developed seizures (I have fine tremors in my hands). So now he really understands so much more. We are hopeful that he will recover from this with treatment, but for me the fact that he can finally really relate hasn't made me feel any less alone in my struggle.

...I have what I call "ttwo circles". One is my insight circle, the one that is closest to me, they are the ones that are few in number but no matter how IM feeling they take an interest. The other is my "outside circle" and they are people that I call friends, but they are more like acquaintances. On days that I am not feeling well I know IM not going to hear from them...

My husband, my daughter and my mother are my inner circle. And I try to pretend so many times that I am okay, just to keep them from worrying about me. After all, what can they really do for me?

Carrie, like you, the few times that I asked for help (NOT from inner circle) I was met with indifference. It is like I am standing here, talking so I MUST be okay. And they certainly can't be bothered to do anything to help!

This time of year is a perfect example. My 75 yo mother is not in much better shape than I am. As her only daughter and oldest child it has always fallen on me to help her with family dinners / get-togethers on Thanksgiving and Christmas. As she ages more and more falls on me. I have 3 brothers (all are married) and my uncle and his family are included in these occasions. Hosting for 50 + people is a lot of work. So I told my family a few years ago that something had to change.
Everyone was very complimentary about the wonderful job that I had been doing, but nobody was willing to step up and take over .

If it were not for my mothers sake I would just let it go. In fact I have already let it be known that after she passes it will end.

I realize that at that time I will most probably lose contact with most of my family, but since I only see most of them twice a year anyhow so what? Like you Carrie, unless they want something from me, I am forgotten. I like that I can come here and vent.

hunterd - it is just so wrong that your family wont make the effort to include you. Why cant they rent a place that is handicap accessible so that you can be a part of family occasions?

VikingKitty - I think that we sometimes do ourselves an injustice by not just letting everyone see our struggles. But like you I tend to hide things - I don't want pity, just acknowledgement and maybe a little help sometimes.

Carrie - I hope you start feeling better soon .

[Temagami]

Oh the irony of the season´s message and the lack of support for you. As they sit around the table expressing gratitude for their blessings, maybe a glimmer of understanding will shine through. I finally asked a friend to go and read some MS websites as I was at my limit for hearing thoughtless comments. She had an "a ha" moment. Maybe your family would be willing to educate themselves and that would push them to volunteer. I really do see that as many of us "look ok," there is little recognition of what we´re dealing with physically, emotionally, mentally and financially. I figure that one day they (heartless family) will encounter their own health crisis, but that won´t make me feel any better, it will only point out to them how scary it is to be in that position.

In the name of simplifying- a crock pot and/or pressure cooker is your friend. I´m a big fan of leftovers.

Sending you cyber positive energy!