Support at home?

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Support at home?

Postby Davey on December 8th, 2004, 5:22 pm

I'd like to get a feel for how married BFS sufferers are treated by our spouses. Our malady is not life-threatening, but at the same time it is annoying and can affect the quality of our lives. It not only causes physical discomfort, but the stress and anxiety (especially among those who still fear ALS) can take a severe toll on us. It is even worse when you get no support.

In my case, my wife isn't very supportive -- at least that is my personal opinion. She considers this all largely to be a hypochondriacal hysteria. Whenever I mention my twitching, cramping, soreness or fatigue, or another trip to the doctor or another prescription, she rolls her eyes and I get the "give me a break" look. I get the feeling that she thinks I am being a "wimp." And when my symptoms flare up and make it difficult to do things around the house or get out of bed in the morning, she gets angry. So I largely suffer in silence, with this forum as an outlet for my frustrations.

So I want to pose this question: How supportive is your spouse?
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby Barb916 on December 8th, 2004, 10:45 pm

Davey,

I just posted the other day using those exact same words "suffering in silence". My husband doesn't "roll his eyes at me" but he pretty much doesn't even acknowledge my emotional suffering. He just ignores it. Occasionally I'll get a "don't worry, your fine" or a "it's nothing" type comment but inside I am a mess.

I not only have the typical twitching symptoms but I also have some slight weaknesses in my hands and one leg and numbnees too. My neuro "thinks" it's some sort of neuritis but isn't sure yet. So, I'm playing the "wait and see" game...and I'm not good at the game! I just keep worrying.

I try my absolute best to hide it from my children..except for the fact that I'm always on the computer trying to self diagnose. They are always asking me - are you done working yet? (I'm a software engineer so I can "say" I'm working but I'm really looking symptoms up on the net. Bad idea, I know.)

Anyway, to answer your question. NO, I don't get much support. But then again, that's the way my husband is about most stuff. He's a great guy but he just doesn't show his concern about things to me. His idea of 'support' is telling me "you'll be fine" and that's it. A big hug once in a while would help !

Take Care,
Barb
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Postby Johnny on December 8th, 2004, 11:18 pm

Davey,

My wife has actually been very supportive throughout the year, and I'm thankful for that. She has tolerated me working out longer and more often in an effort to prove to myself that I'm still strong. Every now and then she'll test my hand strength for me or even run something up my foot to check for babinski. (gotta love a wife who'll check your babinski from time to time :D )

She is and has been certain that I'm fine. But she really doesn't get too exasperated with me - and I do love her for that.

BTW Davey - I posted a message to you a while back about reflexes. You had said in a thread here recently that the harder one taps one's tendon, the greater the reflex response. I was wondering if you knew that to be true or where you heard it - because I too had noticed that with a harder tap or with a heavier object the jerk seems stronger.

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Postby Jerry on December 8th, 2004, 11:40 pm

Davey,

My wife has not been very supportive at all. In fact she has been downright hostile, and she gets more hostile the more I mention it. She thinks I'm nuts.

Johnny, I had to laugh at your mention of your wife checking your Babinski. I think that would be the straw that breaks the camel's back for my wife. If I asked her to do that to me, I'm pretty sure she would try to have me committed. She has always thought of me as a hypochondiac and this past 3 months has done nothing but solidify that belief for her.

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Postby stevepaul on December 9th, 2004, 11:17 am

Davey.

My wife has been very understanding about me and this disorder. I sometimes think she suffers more than me because I do have a habit of snaping her head off when I'm having a bad time of it. I tend to think she has become (excuse the pun) immune to it.

I took early retirement because of this thing, but she still works. In order to make her life easier I take her to work and pick her up again, I also do all the cooking and cleaning.

I think I'll show her this post and earn myself a gold star.

Cheers Steve.
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Reflexes

Postby Davey on December 9th, 2004, 4:51 pm

A reflex is the result of a direct signal from the nerve you are stimulating and the spinal cord. As you (or your physician) taps on your nerve, it sends an electrical impulse back to your spinal cord. The spinal cord then sends an answer. Thus, the more vigorous you stimulate the nerve, the more vigorous the response. Try it. Hop up on a high table or the kitchen counter and lightly tap below your knee cap with your hand. You'll see a slight response. Then give it a good poke and you'll see it jump a lot more.

In medical school, the students practice on each other under the supervision of a doctor to make sure they are consistent with their technique. See this link for what nerves the reflex tests stimulate. The key thing is this: reflexes must be taken as a whole. This webpage says:

It is key to compare the strength of reflexes elicited with each other. A finding of 3+, brisk reflexes throughout all extremities is a much less significant finding than that of a person with all 2+, normal reflexes, and a 1+, diminished left ankle reflex suggesting a distinct lesion.


You can also check out this neat webpage: neuroexam.com, which has on online course on how to perform a comprehensive neurological exam. Most of the early stuff deals with memory, etc., but the later parts deal with the motor system and reflexes.
Cheers,

Dave

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Postby amy_twitch on December 9th, 2004, 7:23 pm

Spousal support is an interesting topic. My husband was very supportive at first. He also demonstrated a lot of concern, especially because I did have a positive blood test come back for ANA--leading my doc to think I 'might' have lupus...but other testing showed that I'm fine.

I went through so many doctor and neuro visits--had all the tests (more than once), and all along he was supportive, but about six months into my ordeal, he took on a "get over it already--the doctors have said NOTHING is wrong with you" attitude. He even asked me point-blank: 'How many times do you need to hear a doctor tell you that this is nothing serious!?'

Long story short--I'm so thankful that I quickly came to the realization that he was right--I didn't need to keep griping about it. I also have two small sons who didn't need to constantly hear about me going to the doctor. My three year old actually started nervously asking me: 'Mommy why are you going to the doctor again?' That was another cue for me.

I simply need to treat BFS exactly how my husband and kids started treating me---my mantra became "enough with the worrying already!!"

It's not easy--and it was a long hard road for me to conquer...but my husband and the rest of my family had heard the words 'it's benign' way too many times. They believed it, and they couldn't understand why it was taking so long to register in my head. Finally, I realized that it was ANXIETY that was keeping me from believing my doctors. I had to start looking at BFS as a minor inconvenience in my life compared with so many countless conditions that could be so much worse. I had to ignore the 'what-ifs' that kept popping up in my head due to of my own anxiety and second-guessing personality style.

At some point, I made a promise to myself that I wouldn't trouble my husband and children with any more "BFS talk" ,you know, constant statements about twitching and fatigue. I decided to take my own stand and said 'to h-e-l-l with these symptoms, I'm living my life no matter what!'. That's exactly what I did--I started living my life again and I kept all my BFS thoughts and worries to myself--to be shared and released only with members of this board who DO understand.

We can't expect our spouses to be an extension of ourselves---we owe them love and individual respect, just like we deserve the same from them. We can't expect them to coddle this nuisance of a condition.

My husband rarely hears me talk about BFS these days. He knows I spend a decent amount of time on this board, and he understands that I'm releasing thoughts and concerns that he doesn't need to hear anymore. I feel like if I keep talking to him about every single complaint that it would just be draining and useless. This said, if my symptoms are bad and just feel like resting, I simply say: "Honey, I'm feeling really tired today, would you mind handling the kids for a while?". That's all that needs to be said---no need for details into every little twitch and ache. What's the point in that? He has bad days too---just for different reasons than BFS-type stuff. We support each other without constantly complaining about the details.

One thing I have learned is that the fatigue part of BFS--while very real--is, in my opinion, mostly caused by the worry that we expend. Once you start worrying less, your fatigue will dissipate.

My best remedy was short-term regimen ofxanax (at my lowest point to get over the anxiety) and some very important conversations with members of this board. I am my own person, and I am responsible for my mindset. I cannot expect my spouse to 'make' me feel better. Ultimately, that was up to me. Therefore, my own reaching out to this board is what got me through those dark times. My family and I now live without BFS hovering over us like a dark cloud, and that's the way it should be.

You do not suffer in silence....you just have to do what it takes to pull yourself out of the 'hole'. You can't expect your spouse to do it for you. Once you put the kibosh on letting BFS invade your family, you will find yourself putting your focus in the right place---simply having fun and enjoying your family! Your symptoms might still nag at you--but you can roll your eyes at them and not let them affect you mentally.

In time, you'll see that BFS isn't really so bad--really truly, it isn't. If you want to argue that point, I will ask you to go talk to a child dying of cancer (think of gut-check examples like this to pull yourself out of woe-is-me-mode). BFS is benign--you are not sickly, nor are you dying, so you can't let stupid BFS sap any of the positive energy your family creates.

Let this board help you fight BFS--and when you turn off your computer--give your wife yourself. She deserves only you....NOT you with a cloud of BFS hanging over your head at all times. Physical symptoms might always be there---but you CAN learn to live your life in spite of them.

You have a lot of friends here, so let us help eliminate the worries so your wife doesn't have to.

After seven years of marriage, I am still practicing being a good partner---that means that I always have issues of my own to work on. Only I can fix certain things that will allow me to be a good partner. I cannot rely on him to do it for me. Nothing he could say or do could ever have helped me get over the hump in worrying about BFS. I use this board to fix my issues with BFS and then I bring a better 'self' to our partnership. That, in turn, makes us stronger. I need this board (even more than an understanding hug from my husband) to conquer BFS. I think that is how many support organizations work...think of AA and others.

Hope that makes sense and helps you out. It was good for me to write this stuff down as more of an affirmation.

Cheers---

Amy
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Interesting thoughts ....

Postby Davey on December 9th, 2004, 8:20 pm

Amy -

I tend to agree with you. My biggest problem is the fatigue I have, especially when my symptoms flare up. I am just dragging -- all day. Sometimes I go to bed early and get 10 to 12 hours of sleep and I'm still exhausted the next day. I also get restless legs, which at times keeps me up half the night. When the alarm goes off in the morning, I am the last one out of bed. On school days, that is not a happy picture.

Of all my symptoms, it is the fatigue that bothers me the most and has the most damaging effect on my life and my relationships.
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby LeeNC on December 10th, 2004, 8:43 am

Wow, Amy:

What a post. It dam near brought tears to my eyes. You said what I feel, but you said it more eloquently.

To add, I feel like most of the things I've accomplished in life took more effort on my part than similar accomplishments by others. But whenever I felt like "wah, unfair," I would remind myself that I could CHOOSE to keep trudging up that mountain...or give up. And although my quality of life really IS somewhat reduced by BFS (shaky, twitchy, tired, etc., etc.), I could CHOOSE to focus on enjoying what quality remains...or give in. I hope my choice is evident! :)

You know that line, "When I was a kid, I had to walk to school, and it was 10 miles, in the snow, uphill both ways." We all have times when we've felt put upon and need to get a little sympathy. You guys are the best. You can provide the needed sympathy, because (unlike our mates, kids, coworkers, friends) you can relate to this BFS biz. Not sympathy, but encouragement here: Don't let this condition ruin your relationships....

--LeeNC
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Post script ...

Postby Davey on December 10th, 2004, 5:57 pm

Amy -

I mentioned the fatigue in my last post. Well, I got back from my neuro today and my TSH was at 10.13, which is hypothyroid big time. And that test was with me on 50 mcg of thyroid a day. So I'm still hypothyroid, which might explain my fatigue. Now he is increasing my thyroid dosage.

We'll see what that does ...

By the way, I loved your post.
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby amy_twitch on December 10th, 2004, 9:08 pm

Hi Dave,
Thanks for the note. Strange to say, but I take it as good news that you found out your thyroid is still low. Only because that explains your bad struggle with fatigue. At least with low thyroid, it makes sense...whereas with BFS, I think we all tend to wonder fatigue stems from BFS, or just a bad day, or maybe we're not sleeping right....etc. Too many unknowns with BFS--that's what stinks about it.

I hope with different dosages (and maybe even different meds) that your thyroid gets back to normal and that you feel more energized ASAP.

Quick question: Is just your neuro handling the thyroid stuff, or is he sending you to an endocrinologist?

Keep us posted on the progress.

Amy
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Postby Davey on December 10th, 2004, 9:39 pm

Amy -

He is taking care of my low thyroid right now. Before it was my GP. If he has problems getting it right, he will probably ship me to another doctor.

:D

Fun, fun! The joys of managed care/HMOs.
Cheers,

Dave

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"Do not fear death tomorrow so much that you forget to live today."
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