Husband doesn't get it

[wendya432]

Sorry to make so many threads, just don't want to jam so much into one.

Just want to vent and get some advice.

My hubby just doesn't seem to understand or accept or something what is going on. I've tried to get him to read things online and he won't. And since I don't have a firm diagnosis yet (besides UMN problem which means nothing to him) sometimes I don't think he really believes me.

Like this weekend... I was able to help a lot cleaning out our storage. I went through boxes, etc. Not any heavy lifting, mostly just designating. But I used up every last bit of my strength. He was like, well I'm tired from it too. But it's so different than just being tired.
Then the next day I was able to use the hand held carpet cleaner for about 10 minutes. When I stopped my hand was just floppy and I couldn't undo the twist tie on the buns for lunch. He was like oh come on, you really can't do that? I said no, I really can't. My hand just wouldn't do anything anymore other than a weak grasp.

A lot of the housework isn't done like it used to be. I just don't have the endurance to have a perfectly clean house. I start things and don't have the strength to finish. Or I just don't even start them because I just can't.

I think he thinks I'm just being lazy.

When I don't sleep well because of the spasticity in my legs he always counters with "well I didn't sleep that well either"

I just wish I could have him be in this body for a day and see what it's like. I don't know how else I can convince him that I'm not doing well.

Don't get me wrong, he is a great guy and has helped pick up the slack in certain areas despite working long hours ona physically demanding job. But this just seems to be out of his grasp.

Anyting you guys have been able to do to help others underand?

and now I am done bee caus this is taking too long to correct and my fingers just don't want to push the keys anymore!

 

[JustTrying]

Yes. I could have written this. I joke that unless I have a gaping head wound, he isn't going to 'get it'. I've also said the comment about swapping bodies.

I am 37, I was in good shape. I have always been one to get up and GO. I get a lot done in a day. So he really doesn't understand why I can't vacuum AND laundry. I'm lucky if I can do one without having to sit down. We have a 5 year old so it's really challenging. I struggle to do daily tasks and it truly sucks.

My family also doesn't understand. They blame my diet, or lack of exercise or my allergies, etc. I feel like I am 37 going on 80, and not even a healthy 80!

 

[wendya432]

Yes, I can ditto you completely. We have a 4 yr old, 6 yr old and 12 yr old. And just keeping up with them is exhausting.

My family also doesn't get it. My mom (who is a nurse even) says I just need to take some classes and get out of the house and I'll be fine.

 

[edwards5257]

Most of my family doesn't get it either. It's very very frustrating and hard.

 

[AKmom]

For a long time my hubby and family didn't get it, till I had progressed to the point of actually injuring myself. Like falling off ladders and stairs. Breaking bones and tearing tendons. I think the one that drove it home to my hubby was when I struggled to open a jar and ripped all the tendons in my thumb and that put me in a cast for a month.

So it took about 18 years since my first symptom for everyone to realize I was no longer superwoman. There are still a few people in the extended family who do not get it, and ironically they are chiropractors, but that's ok, I decided long time ago that I have enough to deal with and do not need them to understand.

Stress makes this worse. Do what you can for as long as you can and realize that unless you are rich and hire a housekeeper, your house will never be fully clean again. So accept it an spend most of your energy on enjoying the good things in life! If everyone else who are able bodied want the house to be cleaner, then tell them to clean it.

To get my kids to understand, I demonstrated with spoons. I gave them 8 spoons and said, this is how much energy a person starts their day with.
I then took 4 spoons away from them and said; I just woke up and stretched into a locked position for about 5 minutes, then I struggled to get up out of bed.
Then I took 2 more spoons from them and said; I had to make coffee for dad and breakfast for you.
Then I took the remaining 2 spoons and said; then I had to clean the kitchen from the previous nights meal.
There are no more spoons left! I could barrow from tomorrow. So I give them 8 spoons and subtract the afternoon activity till there are none. I tell them; this is why if I cook dinner, its in the afternoon, and then I don't cook for a couple days. Because I have used up all my spoons for two days to make sure my family is fed. But I do not have any energy to clean the house and do fun things outside the house.

So my kids response is, we can do some of these things for ourselves so you don't have too. They learned to do their own laundry and learned to make their own breakfast and lunches and sometimes their dinner. They will vacuum grudgingly if I ask, but I no long vacuum. For me it was hard to let the housework slide, but I decided if they are happy in a dirty house, then I can learn to be happy in a dirty house. I would rather not injure myself and be in pain for a semi clean house.

I guess my advice is, don't worry about what others think, just do the best you can do and save some energy for having fun on occasions. Life is difficult enough without adding other peoples hang UPS on to yourself. Eventually they will see if it is truely PLS and it progresses to the point where its obvious.

I am in a pwc anytime I am out of the house now because I cannot walk or stand for more than a few minutes at a time. Not many question me now other than asking what is 'wrong' with me...lol.

 

[vickim]

I get what you are talking about. I run out of steam trying to clean house. I take 2 sometimes 3 days to do what I used to do in a few hours. My family is on board, thank goodness. In fact they drive me crazy. I do let them help but I am a control nut and like to do for myself and I am the one struggling.

If I over do one day then I pay for it for several days. I have a few distant family members who don't get it because I don't look sick, but I don't care what they think.

 

[johnnyliverpool1]

pains my middle name...i look good, except when i forget to put my false teeth in.......try telling anyone that, there eyes glaze over...lets face it, there is nothing more boring than someone giving you their medical rundown....thats the way it is. never mind......johnny

 

[here4her]

If I could just talk to him, I could tell him plenty! Everything becomes a bigger chore the further along this road you travel. Maybe you could get you hands on that film that olly was talking about a few weeks ago. Look up member 'olly' and talk to her. She can tell you more about the film. You will probably have to order a copy from somewhere, but maybe he will watch it. Good luck.

Steve

 

[billbell52]

I have Bulbar PLS so it started with speech and slowly moved down my body. You can't really fake speech problems so my wife was fairly accepting that something was wrong. I, on the hand, did not want to accept something was wrong. My neuro, after doing a battery of tests, finally gave up and referred me to the MDA/ALS clinic. I really think he suspected ALS but wouldn't say so. It wasn't until I tried to pay for the visit at the MDA/ALS clinic and was told I was an MDA patient and they would cover it that I realized I had something serious wrong. It took another 18 months to get a firm PLS diagnosis. After going to a few support group meetings my wife and I realized this was a serious disease.

I recommend finding a support group in your area and taking key family members to it. It is a real wake up call.

 

[Bad Balance]

Yep,
Common problem...just get as much sleep as you can

 

[olly]

I ditto everything said in posts....my son is more aware of my limitations,pain ect ect ect with him being still at home.

 

[IhavePLS]

My wife gets it....and that's about it. No one else I know does and/or they don't really care all that much.

Oddly, my mom is a retired Registered Nurse, and yet she still asks me from time to time: "Have you had your Vitamin D checked?" I try to explain to her that damage to the spinal cord - similar to that of a person who has paralysis - is not a reversible disorder. She listens, and then asks: "So did you have a blood count lately?"