I haven't been tested for HD but I think I have it. I have anger issues. When I get really angry I feel all this anger building up in my chest. Not sure where all this anger is coming from but I do deal with alot!

My mom went to emergency hosp. this weekend because she had a really bad fall in the bathtub. And the dr. said I should start seeing a hospice Dr???? I dont understand. But it made me very upset.

I have to drive my sister everywhere.. soccer games,work,parties and much much more.

And then my family.. My husband and my little one.. and my little does this thing now where she calls me and if I dont answer her she will say mommy, mommy,mama,mommy.. louder louder until I answer. And then sometimes I blow up on her. Thats when I feel horrible. She shouldnt have to see that part of me!

On top of all this I pick up the house and cook dinner every night.. Tiring to be healthy and eating out is not a option for my family.

So I might have some issues but I would like some help. Some advice.


Liz

Hey Liz -
There is no way to know if you have it or don't have it without testing. People go nuts trying to figure out if something is from HD or not. You are under an incredible amount of stress and you have completely rational anger because of this difficult hand that life has dealt you. I know that "Mommy, mommy, mommy, mommy" chant and it makes me nuts! it makes any human mommy nuts!

For my husband and I (he is HD+) it was time to test when we both were going crazy with "does he or doesn't he", did this happen because of HD or not, etc. How do you feel about testing?

Oh Liz.... Hugs. I can't say if you have the HD gene or not, but I can tell you that it sounds like you have way too much on your plate and anyone would feel the same way that you do. A woman can only take so much I don't have HD, but I do work full time and have 3 little kids and can tell you that I get that same feeling at times when I have too much going on. My kids have seen me lose it too. Stress does quite a job on the human body.

I've read a lot of your posts and I know that you have done wonderful things for your mother. Maybe its time to think about other arrangements. You can't take care of her when you aren't giving yourself the best care. Maybe talking to someone will help you as well. Just a few thoughts. Take care of yourself.

I think if I was in a similar situation . I would get a notebook and start putting my concerns on paper . Then writing out different solutions to your challenges . Keeping things simple , do less , for a couple of months . See if that helps . See if your husband thinks it helps . And try not to get mad if he saids no this is not helping . If he saids making your life simple , does help . Then thats good . But , if I had a young family and I thought my anxiety was high a lot of the time , then I think I would have to find out if I had HD . That knowledge might help you and your husband make the best decisions . I think , I would need to talk to a Doctor and get help for my anxiety , get some meds . And if at all possible , stop your extra driving for your sister , for now . What does your husband think , does he see any problems ? Does he feel free to say he sees problems ? You certainly have a challenging life , but , you can meet this challenge , with help from your dear hubby , your doctor and You . all of my best . db

I don't even think if ya did test and it was pos. that you could say that stuff is HD related. We face this dilemma all the time. Things are going crappy, and someone behaves like they are going crappy... is it HD or just understandable for anyone? I think no matter which one it is, if something is not working you need to change something up to get things less crappy for yourself. Even if it requires someone else to share the crap. How ya do that is up to you. You either unload some of the responsibility or keep it and unload the emotions that it all brings.

To be honest with everyone I think I just deal with too much! I try to help everyone but I cant.. I cant anymore. Im tired. When I come back from my vacation in March. My mom is going in a nursing home. Ilove her but Im done!

Thanks you guys for helping!

You have to live for each day at a time.

If each of your days is becoming just "stressed" and "unpleasant" than life is not working right for you.

Its like a set of scales we try to balance when they are each day of life feels as good as it can.

The only way to feel better is to tip the scales back.... the only way to acheive this is to change something, whether that be getting tested, or getting help (a cleaner or a cook or drafting in a family member to share the drudgery) whatever it takes to swing the scales back up.

Having young children working and running the house is stressful for anyone.

Here is a bit of my life story.......

When i was 32 i was a person with HD (but i did not know it then as untested)
I had a job as a commputer analyst 2 children under 2 years old a useless partner a 4 acre smallholding grew my own veg and had animals...

I was unhappy and stressed and worked 18 hours a day to keep things together.... (looking back I dont know whether i felt like that as i had a dodgy gene with a toxic affect on my brain or whether I had gotten into a situation that looked idilic on paper but in practice made me some sort of modern day slave!)

In the end I ran off with another man split up with partner sold small holding moved to smaller house with new partner who after 5 years ran off with another woman right after i had nursed my Dad (non HD) with cancer to his death (all this time I also had a HD mum to sort out and a sister with severe learning difficulties who i had guilt issues for never visiting.

All of this this caused me even more stress and made me quite ill (weighing about 6 and a half stone by the end of it)

Again I made an error of judgement in the man i was with (did HD make me a bad judge of character or was that just how I am?? does it matter?? why its more important to learn how to move on not dwell on why)

The point I am trying to make in sharing some of me life stories with you is that had i been tested before all this "living" i may have blamed it all on HD..... not being tested i blamed in on 2 dopey inappropriate partners.

I have now been tested (as had some physical issues could not be explained away) and i am CAG 41....

I have now made some sensible decisions... I ask close friends when im stuck on something I have a cleaner.. I ask for support from my kids and partner when i need it... (i am currently trying to learn to ask for support BEFORE i need it as this way there is no stress.... but have to be very self aware to make this work.

I feel so much for your plight i hope my words will have some empathetic value for you.


Eric have you considered becoming a clinical psychologist...?

You have such a brilliant way of seeing through th fog and explaining things in lay terms... I think you may be wasted in your current day job!

Not that I know what you do... but im guessing its not medical.

Lorraine x

What's worried me lately is not the fact I'm getting angry, nor the frequency, but the randomness of it. What I mean is, when I was a young punk teenager, everything made me mad. Didn't matter what, if it was something that didn't go how I wanted it, my blood would boil. As I got into my 20s, I grew up, learned to cope, and got angry a lot less. Lately, though, something will set me off, I'll pout and throw a tantrum (I'm exaggerating for emphasis) for an hour, but then later that day, something equally bad (or worse) will happen, and I'm just "oh well."

The common denominator with the "tantrums" is that my wife is around. (And that's not a joke)

Doing too much ca frustrate anyone but especially those with HD. The helpful thing is to try to give things up, if thats not possible what about an anti depressant to take the edge off. I just stopped nursing so I went to the doc and she changed all my meds, hopefully that will help!! I too deal with anger and lots of frustration but my problem usually is I am trying to do things the HD has made too hard.

There's just no way to tell whether this is normal anger or HD anger because the cause is the same and the feelings are the same - you have too much on your plate. It's like you are juggling a lot of balls and just managing to keep them in the air. You're thinking, okay five more minutes and I'll have the casserole ready for the oven and then I can pick up my sister at school.... and suddenly there is one claim on your time too many and you feel angry because now all the balls are going to drop and what will you do then?

That's normal and the only difference with HD is that you can't keep more than one or two balls in the air at the same time, not so many as you have right now.

I think it's time for a family meeting to see how other family members can take some of the pressure off you. Include your little girl. She can maybe set the table with the flatware or do some other simple chores.

I think you are right about a nursing home for your mother. You have other responsibilities that are important and there is nothing wrong with sharing routine care. It doesn't much matter who helps her wash, change, etc. It does matter that you spend quality time with her, and supervise her care, and work with her doctors and that you will go on doing. You may find that your mother does better in a nursing home environment. The rest of us may find its routine to be boring but it's comforting to an HD patient once the disease advances because it's predictable. There's no way that a household with a teenager and young children can be experienced as anything but chaotic to someone at that stage of HD.