Feeling frustrated and unheard
 

I need to vent please. Im so tired of this disease!! Im weak on the right side and have that foot drop but not bad enough to get that boot thing for it. Im taking my shots faithfully... ouch!!

My legs are numb from below the knee to my ankles, and my toes will go numb at will. I keep tripping and falling because I cant tell where my feet are stepping. My eyes are still making me see little flashes of light, but it has gotten better. I use to be great at the typing, but now I hunt and peck... so embarrassing!! I have noticed a few times that when I go to read something, my eyes start shaking, like going side to side.

My limbs jump ALL day!! My right foot jumped so hard the other day, I actually screamed because it hurt. This insomnia is going to make me crazy!! I have not slept more than 3 or 4 hours a night for the past 2 weeks. Im so worn out but cannot sleep. Im like a zombie going thru my day. Thank God I dont work anymore. I have given up things I enjoy in life because of this disease!! Work, driving, walking thru a grocery store..... It has taken so much from me and just keeps on taking.

I can just feel 'ME' slipping away and making room for this new chick! Im usually pretty positive about all this stuff, but lately Im feeling beat down. I try to tell my dh about this stuff, but all he'll say is 'Im sorry' and then he carries on with whatever. Its like he doesnt hear me at all.

If you're tripping and falling, you might want to see about getting the AFO (the boot thingie) It might help your walking.

I've got an AFO, and it really does seem to help, even when my feet are numb and tingly and I'm not sure where that droppy foot is going. Physical therapy is helping me too.

Sorry to hear you're going through that...I'm thinking that feeling that way is probably a symptom of chronic disease, especially debilitating disease, in general. That feeling of "losing" yourself, missing the "old" you, etc. It stinks.

You know what, I think your husband really DOESN'T hear you. I swear that men have ears that filter out anything remotely resembling emotion. I don't think most of them do it on purpose, they just can't process emotion. My daughter says, "Hey, even the best dude is still a dude".

I don't say that to excuse him if he's dismissive to you or whatever, just that I experience the same frustration, and there's no doubt in my mind that my husband loves me and cares about how I feel. He just can't FEEL how I feel.

Back when he was diagnosed with cancer, I wanted to TALK about it (of course), get him to "open up" about his fears, his concerns about how it could change his life, how we'd deal with various scenarios. He said, "There's no point in talking about it, it will be what it will be."

I know this doesn't apply to all men, and there are men and women here on NeuroTalk that understand and will listen and will share. We'll help each other find ways to cope. Sometimes just knowing somebody else thinks the same thoughts and feels the same feelings helps.

no advice, just hugs. :hug:

I hear you KL. :hug:

This is a dirty, dispicable, painful, mean and lonely disease and sometimes unrelenting and unforgiving. It sounds like your DH is doing the best he can, under the circumstances. After all, there is no cure and nothing he can do, but stand behind you all the way and comfort you.

I hear you loud and clear KL......wish I didn't.:rolleyes: This miserable disease just continues taking away more and more of our "old" lives until we're somebody we don't even recognize. I hate it!:mad: Does anyone without MS really get it? Don't think so. Thank goodness for our friends here at NT who DO get it and are here to share and support.:hug:

I get it as much as I can because CMT takes and takes as it progresses. And sometimes, kind of often now, I wonder who I have become from what I once was. And I'm not happy. Of course age comes into play as well. So far I am healthy except for CMT. I hope it stays that way. Hang in there.

Sorry you're going through a rough patch, KittyLady.

One thing I'd do is think what I'd do if the situation were reversed. What would I do for my DH if it were him instead of me with MS.

My DH died a few years before I was dx with MS so I've never known how he would have reacted to me having MS. Maybe you could just talk to him and tell him you're feeling disconnected and need him to just listen and confirm that he hears you. Men are sometimes not good at this.....I know my DH wasn't.

i really feel for you, going thru such a rough time.
however, i feel like you should see your neuro for an exam.
some of your sx's (symptoms) might be able to be tx'd (treated) with meds.

you might even need a PT evaluation which could help with your leg/ft sx's.

i just don't think you have to suffer with all this. if your dr won't listen, time to find one that will.

please keep us posted.

:hug:

I hear you.

If your husband doesn't hear you, you might need to make a louder noise. Or a softer one. Or change tact in some way that he "gets it."

Best to you, KL,
ANN

Hi Kitt
 

I just want you to know that another human being hears you. I am sorry you are suffering. I wish your family was more supportive for you. Please just keep coming back, let all of us be a family to help you through the darkest time. I don't have your exact issues, but I know pain like so many of us do here. I am not what I was either. This place here is santuary for me, and I run back here all the time for support. I care about you. Depression is hard to beat off when our bodies arn't right. I am here too, if you ever feel like talking. You will be in my thoughts and prayers. I actually do have a little (long) list going....ginnie:hug::grouphug:

My family is supportive. I am thankful for that. It's just that sometimes a person gets down but I'm doing fine enough. There are many good times too. This would be true for the general population as well. Thanks for your concern.

Thank you everyone for your replies of support. My dh gets it more than I gave him credit for. I found him in our bedroom crying. I asked him what was wrong and he said he cant find a way to help me get better and he feels he's failing me. Made me cry to hear that. I told him a hug and cuddle was all the healing from him I need! I guess I forget that because of me, he has alot more on his plate and he is having a hard time adjusting to it all also.

Kitty Lady, my MS symptoms are not a lot different than when I was dx'd. Of course they had to be pretty bad, and show on tests, before I was dx'd after 34 years of symptoms undx'd and untreated (I think I was 51, I forget). I had years with no eye trouble after 8 years of eye trouble, the eye trouble precipitated the dx. Now I'm back to severe eye trouble, which I believe is brought on by the smoke we are having now, and had last summer, from big wildfires in New Mexico. My eyes do that side to side routine you describe (it's called nystagmus) and if I sit too long at the computer, the eyes go up and down and clear up into my head, at least from how they feel, a definite sign to stop computing. I am trying not to use the computer much, and listen to news on the puter rather than watch it, as much as possible. So I have lost one of the main things I got in my old age--computer use. Not lost completely but severely curtailed.
You could say my eye trouble from smoke is more Porphyria than MS, but the results are pretty much similar, how to know? Docs don't know. After so many years of recovery in that area (although other illness popped up too, Polycythemia Vera for one).

I do not feel I am losing me because I've been locked into a ferocious struggle since I was 17. I had never thought of it that way until I read your post, and compared it to me.
I have many of your other symptoms too....the jerks are now keeping me awake ALL night, and then I sleep until ten, and even magnesium, my standby for many years, prescribed by a neuro, is failing me at night. The jerks are painful and make me call out to God for help.

The ups and downs of this dis-ease are so hard to share with those who have not experienced it. Over time and through experience many of us have learned that it is difficult for others to understand how depleting it can be to live with disabilities that are quite often changeable and unpredictable. It is just too exhausting to constantly explain all the subtle and the not so subtle accommodations and adaptations that are made just to get through a day; so they often aren't mentioned. Add to that, having symptoms that are constantly there, medication side effects and the emotions that arise as a result.

That is a huge load which becomes overwhelming for us at times; so I think that when we do express our frustration and suffering when it becomes too much to handle on our own, we should remember that others have perhaps not been privy to the build up. To them it may just come across as us having a "bad day". They simply may not appreciate the ongoing nature of our suffering; much less how to help us deal with it. Because of that, they might then experience their own form of frustration at not being able to make it all go away.

I think that it does help to let others know that when we are overwhelmed, that what we are looking for may be some something as simple as compassionate reassurance in the form of a comforting hug, some kind words or maybe a bit of assistance with everyday sorts of stuff that isn't getting done. My late DH was awesome with that, but after his death 7 years ago, living alone and carrying on has been difficult at times. There have been experiences with levels of isolation that I didn't even know existed; yet a simple act of kindness can be so uplifting.

I remember coming home to a great unexpected gift after I had been away for a week to attend medical tests and specialist appointments in the city (I live in a small town). My house/pet sitter and a friend had committed "a neatness" in my house and yard while I was away. I arrived home exhausted and depressed, but my mood instantly changed when I pulled into my yard. The lawn was mowed and the flower garden had been weeded and watered. It got even better when I entered the house because the floors had been washed and the floor mat carpets had been cleaned. There was even a vase of fresh flowers and a sweet note welcoming me home on the kitchen table.

I almost cried, because it was so wonderful to know that someone cared enough to reach out and show it in such a meaningful way. It was such a relief to have those chores done as I had not been able to do it properly for some time due to spasticity, fatigue and severe headaches. It meant so much, yet although I tried to express it, they may never understand how much of a load had been lifted from me by their kindness. It really helped to change a deepening sense of isolation that I had been experiencing; and for that I will be forever grateful. Things like that will never be forgotten.

May you all experience such compassion and kindness from those in your life.
What another wonderful gift it has been to find it in the genuine kind thoughts of those who do understand what we are going through here on this site.

Thank you.

I think our men really do care a lot about this. The thing is, that they are wired differently - they want to race in, be the hero and fix it all - and when they can't they don't know what to do. The pressure has been on them all of their lives to 'be strong' to 'protect' to 'not show feelings' and to make it all ok.

Now they are faced with something that is affecting the person they love most in the world, they can't fix it - they can't even ease it most of the time, and they aren't programmed to talk about it like we are.

As women, we discuss, we ruminate, we go over all possible scenarios, we don't solve it, but we feel so much better for having talked, cried and shared.

See what I mean? I think MS is a cr@p situation and we all deal with it (patients, partners, men and women) differently.

I am sorry that you are feeling so bad though. I hope that things will be better for you soon, just remember, that this is a great place where we do understand what is going on.

I was just thinking, what a bunch we have here. A wonderful, compassionate, understanding and loving bunch...:grouphug:

awwww. your hubby is a gem. what a sweetie.
i think men have to be the fixers among us. women need to talk but men need to fix and feel inadequate when they can't.

Since my husband died, I have no one who does nice things like mowing the yard or bringing flowers, unless I pay them. Not even my son. He did have me over for brunch on Mother's Day, first time for that, very nice brunch he cooked for his wife, kids, and a "grass widow" they like. I let him know how much I appreciated it. For those to whom this kind of attention is common, be grateful. when I pay my handyman, or anyone else, I thank God my husband left me with a pension which made this possible. And I thank my husband for leaving me with that. On my own pension from teaching (career cut short by disability) I would not be able to pay a handyman. I do not have any idea where I'd be, as retirement homes would be way beyond my reach. I cry every day for my husband, who died three and a half years ago, and was the only one who loved me after I became an adult. Thanks, Irvin, prince charming of my life.
PS, Irv was old when he died, didn't look like prince charming any more, but if anyone wants to see what he looked like when young ( I met him when he was middle aged) google Prince Guillome of Luxembourg. There are a number of videos of the Luxembourg family, including one of his engagement to Stephanie de Lannoy recently. The whole family is interesting and they have become my midnight hobby when I can't sleep, which is every night now, due to jerking muscles radiating down my legs from my back. An odd hobby but better than the "real" news.

It is hard sometimes to go on when our partner passes away. I still miss my husband for all the reasons that you mention Mariel...and some that you don't mention, but we probably share.

Five years ago it became apparent that my yard and garden was a bit much for me to handle on my own so I tried something that has worked out wonderfully well. I made the vegetable garden even bigger by getting the lawn stripped off and having some good garden soil mix hauled in. Then I had some help putting it all into raised beds. We didn't do anything fancy; so we didn't build any wooden frames or anything like that. We just hilled the soil up into 4 ft by 15 ft beds and made smooth even paths around a foot wide in the dirt between them. There are two rows of these beds with a path wide enough to accommodate a wheelbarrow going down the center.

Once there were around 20 separate garden beds, I began inviting others who couldn't handle a full sized garden to come and grow their vegetables in my yard. Well, it really took off and now there are a few regulars who come every year to garden. One sweet elderly couple in the eighties who rent a small apartment come every year since we started the community garden. This couple grows vegetables for themselves and for their adult children who work full time and don't garden. They, as well as another lady who lives alone and who was devastated by a long bout with cancer are overjoyed to be gardening again. They don't need to worry about doing heavy stuff as I arrange for that; usually through trading someone for their work with fresh vegetables from the garden or with apples from the trees in the yard.

We grow all sorts of things in the garden and then they can use my kitchen, dehydrator or canning equipment; as well as my freezer to put up whatever they like, as they choose. We also grow flowers for cutting and just enjoying. A couple of lounge chairs on the lawn beside the garden is a nice resting area for those who need a break or just want a nice place to hang out for a while. What started out as a modest garden plot now encompasses the whole yard. Now there is a wide garden bed that goes right around the perimeter of my city lot as well as another plot we put in just for flowers that takes up around a quarter of the yard. At one end of the back yard we have a series of compost piles on the go all the time, although I see that someone planted a couple of giant pumpkin plants on the top of an old one this year.

I don't have children of my own, but sometimes the children or grandchildren of these folks come and help with yard work. They do things like helping to haul and spread compost, prune trees, pick apples and care for the small lawn that is left. All in all it has cut down on my work load outside as everyone chips in to pull weeds and do the things that need doing; but only as we are able.
A nice additional benefit is to have a little company from time to time...but mostly we don't bump into eachother that much. Even so, seeing that someone else's green thumbprint has been left behind is just as nice.

Might be worth a try for you or others.

hello Mariel
 

You reminded me to be good to those around me who do help. I cannot afford a handy man either, and sometimes my neighbors come to the rescue. I am sorry you lost your husband. I know what it means to love someone, and then loose that person. I wish you peace in your life, and new friends to help you. ginnie

Great Idea, Erika!
 

Erika, what a wonderful idea! You're helping yourself and others at the same time.

I lease my house so I'm not sure how the landlord would feel about the back yard being turned into a veggie/flower garden but for those who can manage it it's a great idea.

I have to have a man keep my yard mowed and trimmed up. He's great and gives me a break on the cost. My DH died almost 11 years ago and it's difficult without anyone to take care of the "big" stuff. I've been truly blessed with good folks in my life.

There's a few of us here who've lost our husbands and have to "figure it out" on our own. We can help each other by sharing tips and ideas of what works for us. :hug:

Wow Erika! That is quite a venture and adventure you have going on there. What fun. I only wish I were able to join you.

I don't even get out in my yard anymore, scared I'll fall and won't be able to get back in. I'm a little agoraphobic.:rolleyes: The nice yard that I and DH took care of for 30+ years, is now just barely taken care of by others..:(

But to lease your yard out to people who, in exchange, would keep your yard neat and trimmed, is a grrrrrreat idea.:)

Awe, sorry to hear that Sally. Wish you could join us in the garden patch too. Its a loose arrangement and people do what they want to and only when they can; but I hear you on the fear of falling etc. This rotten disease is so cruel.

With love and hugs, Erika