This is not a happy, funny or light post. If you don't like the heavy stuff, come back Wednesday. I don't mind and I completely understand. I just need to vent in some form or fashion and tag, the blog is it. Today is an angry day. No, I'm not angry, I'm pissed. My husband fell this morning. Seems his MS is fucking with his balance now. This has been going on for weeks but he hasn't fallen before, he just got dizzy.
I only reacted enough to verify he hadn't been physically hurt by the fall. I say physically, because I know emotionally and psychologically, it's damaging as hell. We got him up, dusted him off and I got ready for work. Then I cried the whole way to work. Normally his MS doesn't get to me this bad, but I am really feeling it right now. If he is getting dizzy spells now, how long before he is in a wheelchair? How long before he's bed-ridden? How long before this shitty disease shuts down the part of his brain that keeps his heart beating? Or his lungs functioning? How long before I have to decide if he should be on life support or this shit disease takes that choice from me?
I work in a room with 4 other woman. All 4 of them have buried a husband. They joke that I'm not in the widow's club but here recently I get that lovely word running through my head. It's only 3 letters but it seems huge. The word is YET. And it pisses me off. I hate it. I want to scream and cry and rant at the world but there's nobody to yell at. I don't want to bury my husband at a young age. We want children but there's new studies showing MS may be hereditary. I get angry with family members who don't understand. I want them to back the fuck off without having to scream at them. I don't want to ask his mother if she wants to bury her son just to get her to stop nagging him about taking time off from work.
I hate watching him break down and weep in frustration. I hate watching him fight off depression. I hate watching him rage against everyone because there's really no one to blame. I hate that I am fascinated when he sleeps because he's so still. So quiet and peaceful. So everything he's not when he's awake. I love his laugh and I hate the fact that when I hear it I try to hold onto it and save it. My head says there will be plenty of laughs. My heart tells me I need to hold each and every single one as dear as I can so I can remember them.
My husband is so far from perfect it's scary. He's an ass, he's unforgiving, he's messy and he's selfish. I have people who can (and will) vouch for this. He's demanding, overly possessive and protective to a fault. He's also loving, gentle, playful, intelligent and funny. He puts up with all of my shit and still manages to say he loves me and mean it. He's never said "You have too much yarn." He's convinced I can do anything I set my mind to and he's always supported any life altering decisions I make. MS is threatening to take that away and I want to hurt someone responsible and there's nobody there.
It's exhausting to cry in the car and go inside and pretend your world isn't falling apart. I'm tired of being supportive all the time and not letting him see me break down. He thinks I'm strong and that I am taking it all in stride. He praises me for putting up with his mood swings and loving him enough to not leave him because of his disease. I'm not brave. I'm not strong. I'm scared and angry and hurting but it would tear him apart if he thought he was causing me pain, even inadvertently.
I'm going to get through work, drive home and then sleep. I'll wake up tomorrow and find my happy place again all will be right with the world. Until then, I'm going to knit and try not to use my needles as weapons. I'm also going to smoke (not at the same time as knitting though) and try not to use stupid people for ashtrays. It's not a great plan, but it's a plan.
Living vicariously through others with grace and elegance. Okay, no, I'm actually trying to find my own life by stalking the shit out of it!
30 comments:
A plan's a plan. I'm fond of screaming in the car, but that's me.
Do what you need to do to, sweetie. *hugs*
Hi, Angie,
Your name has long been familiar to me from Ryan's and Norma's blogs, but I only recently had the doh! moment when I searched out your own blog. You didn't ask for advice or sympathy or anything, but I'm gonna give you some -- take it for what it's worth. I think you should search out an MS family support group. Find some other people who are going through/have gone through what you are. It may not change the final outcome, but being able to talk and rant and cry with others who understand can help you cope with your own anger and sadness and guilt, etc., etc. I live 1,000 miles away from you so I can't recommend any group, but your husband's doctor or nurse or clinic may know some. Or your city/county public health service. Or just do some googling. Really, there is no reason that you should have to carry this weight all by yourself. Best of luck, honey.
Angie
I just happened across your blog last week through the Harlot and I'm glad I did.
I will keep you and your husband in my prayers.
I know that there will be good days and I know that there will be bad days. I pray that the good will outweigh the bad.
Stay strong. I don't know you, but somehow, I know you can do it and remember, we here in the knitting/internet world are here for you.
Sending hugs, love and prayers your way.
I, too, was familiar with your name but never came to your site because I am trying to limit my time in blogland. For some reason today I decided to visit.
I was very touched by your story. You ARE brave and strong. And you have my permission to use stupid people as ashtrays.
My thoughts are with you and your husband. I will be "praying" for a remission.
You are angry, and with good reason. You have the right to be pissed off, and you have every right to cry. Just don't think it is because you aren't brave, you are. Brave people are frightened, and still get through it. If you aren't scared, you can't be brave. All my thoughts and good wishes go with you today. I hope the sun reaches the dark places soon.
He IS an ass.
But I'm sorry to hear things are getting worse.
And you are strong enough. You're still with him, aren't you?
Just keep picking up the pieces and carrying on. Easy to say, true, but well, you know where it's coming from.
Being brave is doing what you have to do and not running away. It doesn't mean not being angry or depressed, but just getting through it as best you can. A support group that understands can help. You can do it, you are doing it. Hugs and good wishes.
I forgot to sign my anonymous comment. Love and good wishes. Joan in Reno
I couldn't make it through the whole post for more reasons than I can count. As you know, I am in the widow's club. And I will be again some day in the next 20 years (I'm hoping he's got that long).
I'd like to chat with you about some things or at least be a sounding board for your frustrations. Neurological disorders are pretty f***ed to deal with, both within yourself and in the one that you love. I some how have the great fortune to be dealing with a second "head" case. How the hell did I manage that? Long story.... Anyhow, sorry for the essay in your comments. But you've inspired me to blog about such things. And I do actually have some lovely stories that may help your heart about people who have managed to halt their MS progresison.
Oh sweetheart I am so sorry that you are suffering like this. Vent. Do what you need to do to stay strong...to be an Amazon through all the shit.
Every day that you get up is an act of bravery. Don't doubt that for one second.
If I could I'd buy you a couple rounds and a pack of smokes and let you rant and rave all you want!
You definitely deserve rant time for all you're dealing with... that's what we're here for. And you're definitely dealing with it better than I ever could. I admire your honesty and bravery and think you're one hell of a woman!
*hugs*
You do what you need to do to get through the day, stalker friend. We are only here to support you. If you need to cry in the car, go to it. If, on the other hand, you need to knit...
{{{HUGS}}} going out to you from me. You are doing a stellar job and we all admire you for it.
Don't think that it is wrong to be angry or feel helpless, these feelings are all quite normal. It is part of the grieving process and lets face it, having a good cry does make you feel better.
Everything you are feeling is normal for what you are dealing with. Your heart tells you to hold each moment so you can remember them? Do it. Remember none of us are ever given a guarantee for tomorrow so there's nothing wrong with holding each memory dear. Hugs
Mary
Oh Angie, that post really moved me. Thank you for talking about your feelings in a place that others can read.
My husband is a type 1 diabetic and has been since he was a kid. I didn't know about his diabetes until after I was head over heals for him. He doesn't like anyone to know because he hates thinking that people might think he is or treat him any differently from anyone else. Most days he really isn't any different from anyone else other than all of the medicine and injections he must take. Every once in a while his blood sugar will get low and he won't be able to wake up in the morning, or he will become a zombie in the middle of the day. Those are the times when I have to take care of him because he cannot take care of himself. It's scary, and hard, but I love him, what else is there to do?
We talked to many doctors before we had our daughters to make sure that his being diabetic wasn't going to increase our chances of having a diabetic child. It would kill him if either of our girls were diagnoses diabetic.
All of this is to say that in a small way I can understand what you are going through and the bravery it takes to make it through some of those days. You are a strong woman, please don't doubt it.
*hug*
Amanda
http://myonlysunshine.typepad.com
Hugs and happy thoughts winging your way.
I, too am a recent new comer to your blogs. I wish there was some wonderful insight that I could give to you to put everything into perspective. But, I'm not a person to wax philisophical, so just know that many people are praying for you. Please rant and rave all you want, cry when you need to and then grab a hold of those wonderful happy moments and never let them go.
Bravery is being terrified, and doing it anyway.
I wish there was something I could say that would help, but there never is.
Hugs and thoughts and hopes for you.
Angie I am sorry to hear about what you are going through but you seem like a really strong person so I you do whatever you need to do to get through this. I think it is very brave of you to express the way you're feeling and it is okay to sometimes feel like you can't handle things. It sounds like you are being very supportive of your husband and that you both love each other very much. That will get you through anything. We are all here for you when and if you need us.
Angie-
I just started reading your blog because of the Yarn Harlot. I am so sorry for what you and your husband are going through. Stay strong- and it's ok to let him see you break down once in awhile- even if you're afraid it will hurt him. Please take care.
Lauren
Dude. It takes one hell of a woman to say what you just said. The weird thing about doing brave things is that you almost always feel the exact opposite of brave while you're doing them.
It definitely helps to talk with people who are going through the same thing. I'd be lost without the people who have had similar experiences to my current medical pile o' shit telling me I'm as alone as I think I am.
I'm little, but my shoulders act like I'm big, so feel free, darlin'.
Duh, telling me I'm NOT as alone as I think I am.
Brain cramp. It happens.
Damn you, for making me cry at work. And there's no tissues or even napkins close. Sheesh.
Big {{hugs}} to you and T. Sorry it's so tough. I agree with kmkat and suggest you find a support group.
Oh, honey . . . oh . . . I wish I could just give you a huge-ass hug right now, and let you cry and cry and cry if you needed it.
You are amazingly brave and strong . . . I'm in awe.
so, yeah. i'm semi-new to your blog (you're truly funny and awesome, by the way), and i'm sorry you and your husband have to endure this. if it helps any - i used to take care of a gentleman who has ms. he was in a wheelchair when i met him, but he said that accupuncture helped him stay on his feet for many more years than the doc said he would. anyway, i empathize. scream all you want. i'll let you know if you're heard in the northwest.
cheers, badrabbyt (aka avalynda)
My mother died of Lou Gherig's Disease, and it's completely heartwrenching to watch someone you love rage against their own powerlessness. The only good advice I can give you is to join a caregivers' support organization -- if nothing else, they'll be people who are local to you and can empathize with what you're going through. They can also point you towards support services you might not have known existed. I'm so sorry to hear you're going through this, and wish there was more us "imaginary friends" could do to help.
Anytiime you want to vent, there is a huge community out here to support you. Better here than to your husband or family sometimes.
May you find the strength to get through the next five minutes. And the next. Then the next. Sometimes the minutes are all we can manage.
And may they add up to years with your husband.
Angie
I don't have any miraculous words of comfort to offer you...wish I did... but as I read your post , you articulated everything I felt and went through as my darling husband lost his battle with cancer 7 years ago. Everyone wants to take the hurt away and they can't. Everyone "knows what you're going through" and generally, they don't... but I did... and Ang... I was staggered to find that I had read the whole post and not broken down. I may not be able to bring you the comfort I would want to at this time, but YOU have comforted me. Keep strong my dear.
I also found you thru the Harlot and I already feel like you're a new best friend. My mom used to say "take it just one day at a time", and Sandra in Canada brought it down to a more manageable level. You're brave and strong and awesome in every way. (And stupid people usually don't even know when they've been 'butted'.) Hugging, loving you.
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