brain drain and other people

momexp5 · Post by **momexp5** » Mon Jul 04, 2005 11:16 am

I have a real thread starter here - about how angry I am underneath over how little compassion and understanding I've gotten from my family as I went through so many years of exhaustion and sleep deprivation, with my severe allergies and sleep apnea. The utter lack of empathy for my mental confusion (like another poster said recently, I thought I was going toward alzeimers), memory problems, inability to sustain thought, brain zappiness, all the awful symptoms of *chronic* sleep deprivation, and the *pain* of trying to function despite all that... What I've suffered, wouldn't be tolerated at Guantanemo! Oh, the *criticism* and *looking down the nose* treatment I've gotten from my sisters over being exhausted and sick, which they saw as a character flaw. And my husband. And my inlaws. This has been out of my control for so many years! Until I had a chance to address the medical issues. I could not help that I was exhausted! I couldn't help that I always wanted to sleep in the afternoons, that I couldn't ever quite "get it together" and turn my house into House Beautiful (I should've been able to, right? Who cares if we moved every 2 or 3 years). My husband verbally and emotionally *tortured* me over it, telling me that I was a lazy b****! (I'm heading for separation here...). His pushing me beyond my physical limits, with moves and lack of involvement around the house, unexpectedly leaving me in spots where I had to function as a single parent, and *then* denying me breaks or vacations - he was just too busy, doncha know, but he could skip off and go camping with his brother and fly around the country to go to birthday parties for his parents and siblings - then when I ended up a psych hospital exhausted into a crashing depression, my family was *entirely* absent from being any support whatsoever. Because it was just me being a flake again. If they thought of me as sick, it was the judgmental "she's a mental case" spit-the-word "sick" out version. The incredible lack of sympathy for the effects of sleep deprivation has *so* alienated me from my husband and our families.

Like the time when we moved from the northwest to the northeast in December, driving precariously through snowstorms *trying* to make my cousin's wedding, driving separate cars and towing a huge trailer with our household goods - added to the ongoing sleep deprivation and chronic sickness from the allergies - and my family got disgusted with me because I wasn't chipper and social.

I think that they are all uninterested in including me in their lives. They don't even know me - I've spent so many years being exhausted to the point of having my brain so fuzzy that I just couldn't join in the witty repartee... nobody has been around to help with our kids or our moves or anything, I've been so completely on my own heroically plugging along... may I say... *damn!* I've started just telling people - I don't *have* extended family. Like they're all just dead or they never existed.

So, anybody have similar problems, or perspective to help me with this? Sure would appreciate it.

ozij · Post by **ozij** » Mon Jul 04, 2005 1:05 pm

momexp5 --
Actually, I wish I could call you by a name. You are not only a mom - though apparently not many in your vicinity seem to realise that... You are a person - and I guess this is one of those times where it might help to remember that friends are the family we choose - the family we were born with, or were married into are just that - not something we choose, and not something we necessarily feel good about.

And sometimes, when we're angry, the only thing we want to do with those we are so angry at and disappointed with, is to disown them... that is probably one of humanity's basic instincts. Do you know that in the bible, at least in the original Hebrew, when Moses and God were discussing the creation of the golden calf, they were saying to each other "look at what your people has done"? "Your" people, not "my" people, disowned in syntax.

You've got a lot on you plate - taking care of your health, as you've now started doing will make things easier. Not easy, easier.

We're here, rooting for you, knowing better than most whan brain fog is and does - hang in there.
O.

P.S. - I reread your introduction post, and noticed you have allergies to wheat, and are anemic. Have you been tested specifically for gluten intolerance? Anemia is one of the more common - less familiar - results of gluten intolerance, also know as celiac disease. The medical profession tends to think young women are anemic because of bleeding every month - but research has shown that the proportion of gluten intolerant young women is much higher among those with anemia than among those in the general population. In other words, any young woman with anemia should be tested for gluten intolerance.
http://www.celiac.com/st_prod.html?p_pr ... 5040826.b7

snamvar · Post by **snamvar** » Mon Jul 04, 2005 1:10 pm

I am sorry to hear the lack of support and all the negative judgement in your life. Besides OSA and using CPAP, I have a condition called Delayed Sleep Phase Syndrome where my sleep/wake cycle is later thatn normal (3-11 am). This is a very rarely disorder and almost always get misunderstood as laziness. All I can tell you is to love yourself and take care of all your needs. If others are not supportive and put you down, the real question is do you want to be near them?
Those who really love you would understand. Those who don't, try to educate them. Hold your head up and don't feel ashamed. You really can't do much about what others think, but you sure have control about what you feel. Be assertive and develop a self-love attitude.
Best wishes.

Guest · Post by **Guest** » Mon Jul 04, 2005 1:52 pm

Having spent time in the psych ward myself, I can see that you might feel that those around you are not being supportive. One thing that came up many times during group therapy was the loneliness and despair that those of us in therapy felt. Many people felt that their family members could not understand what we were going through. As part of our therapy everyone had to take anger management. I quickly learned that almost all of us were angry. Being angry also made us very judgemental and critical of those around us. I think that is why so many people retreat into their bedroom and bed and try to just sleep the time away, so that anyone around can be kept away and not dealt with. Suffering from depression and mental illness is still not accepted by our society. I used to hope that when they were running all the tests to determine why I was passing out, they would find a cancer or a brain tumor. It would have been much easier for me to deal with. If it was easier for me to deal with, then I could only imagine how those around me could help and comfort me through the treatment. Unfortunately I suffer from depression, and for me it is one of the worst diseases there is. I hope that you can muster enough strength to reach out and not judge those around you, and then work on not judging yourself. I wish you all the best!

littlebaddow · Post by **littlebaddow** » Mon Jul 04, 2005 3:24 pm

Hang in there, momexp5.
I don't want this to sound glib, but don't let the B*gg*rs get you down.
Now that you have found the causes and have started to deal with them, take strength from the knowledge that you can overcome them.
More importantly, keep coming here for support, empathy, advice, a place to rant, whatever you need, because you'll find all of those things here.
Good luck.

so tired · Post by **so tired** » Mon Jul 04, 2005 4:13 pm

Momexp5, I am so sorry for what you have been through over the years. It is terrible to feel so alone. The good thing is that you are able to talk about it now and be understood. We are here for you!! I myself am a single mom and mostly on my own with the rest of my family up north for the last 20 years. Had I been up north I think I would've gotten at least a little support. Aside from some co-workers who never understood why I don't do mornings, and who I guess just thought I was lazy, it is how I acted that I most regret. As we all know, one tends to get really really irritable with continued lack of sleep. I am ashamed to say that it was my boys who took the brunt of this. I yelled a lot. Repeatedly saying I was soooo tired just didn't matter when they were little; they couldn't understand. Couple the lack of sleep with being a single parent and responsible for so much, I was not easy to live with. But now, praise the lord, I can start anew and try to make up for the lost ground, a little at a time. I can be FUN again!!

momexp5 · Post by **momexp5** » Mon Jul 04, 2005 4:14 pm

ozij wrote:You've got a lot on you plate - taking care of your health, as you've now started doing will make things easier. Not easy, easier.

*possible* might be the word...!

We're here, rooting for you, knowing better than most whan brain fog is and does - hang in there.

Right, exactly - you guys know! :-/

I reread your introduction post, and noticed you have allergies to wheat, and are anemic. Have you been tested specifically for gluten intolerance?

No, I haven't, but that's interesting. I'll look at it and see if I match any of the other symptoms - and I'll ask my doctor to test me next time I'm in. Thanks for the link!

Guest · Post by **Guest** » Tue Jul 05, 2005 12:12 pm

momexp5,

As the son of a mother who's life was similar to yours, please hang in there. Things can and will improve. You are a valuable person both to yourself and your children. There are times when we all need help. Seeking help does not mean we're weak or worthless. It means we're trying to get better. Selfish, superficial family members may not appreciate you but your children need you.

Please know that you are precious and worth more than you know. Never loose sight of that.

My mother died knowing her children loved her. Her family didn't attend the funeral because "we held it in the wrong town".

Sorry for your hardship, please know other care about you and want to to get better. Perhaps the best revenge you can have it to out live them.

Swordz · Post by **Swordz** » Tue Jul 05, 2005 2:34 pm

I hate how people regard me as "lazy" becuase I can't do the 9-5 thing. I'm in college and can't attend any 8-10AM classes becuase I'm so drained and tired. My brain is fogged and my social skillls @ that time of the day are nill.

I'm only 23, but I know that I've had this severe apnea since I was 15. I remember not sleeping well in high school and barely being able to stay awake in class.

It is so pathetic how our society frowns upon sufferers of legitamate illness because they deem them fraudelent. As far as I'm concerned, I don't care what other people say. I care about my reputation, but if people think I'm lazy so what. It pisses me off, but I know that I have severe apnea and they have no clue what I'm suffering and going through. It's soooo damn frustrating being in the "best years of my life" but hating everyday usually because I wake up so fatigued and can't enjoy much.

To those with apnea, continue with your life in the way you know how.

With those who don't understand our condition, correct your ignorance and allow us to live.

Swordz · Post by **Swordz** » Tue Jul 05, 2005 2:35 pm

Hehe... Sorry if I'm seeming pissy, I'm just really frustrated with being labled "lazy".

sleepy gal · Post by **sleepy gal** » Tue Jul 05, 2005 2:58 pm

Hi Momexp5.....you have every right to feel angry and frustrated. You are dealing with a very serious illness that too few folks (including your husband and rest of family) understand. I really think that only those of us who share your exhaustion and bone tiredness can really understand what it is like. But there are those of us here who do understand what you are going through.

Wish I had a solution for you,...will your husband read any books about sleep apnea? Or log onto one of the sites? Might be (sorry about the choice of words!) a "wake up" call for him. but hang in there, hopefully things will get better for you and your family.

Terry Flower51 · Post by **Terry Flower51** » Tue Jul 05, 2005 4:23 pm

Its so good to have this place to come and be real w/each other about our struggles, isn't it?

I think most all of us can relate to what mom&swordz vented....also this time of year..."family holidays" make it more painfully obvious when there is little extended family in our lives who genuinely love us and want to be a part of them.

Some of us have had that rejection since birth sis....not apnea related, just plain "life". What has healed me is knowing that God loves me without reservation and having a relationship with Him that no man can touch and that is eternal.. Even if another person on this planet didn't welcome my coming, He did...He created me for His pleasure and plan....My expectation of people, family, is "well, people will be....people" We all let each other down and let ourselves down....some more cruelly than others. I've stopped looking to people for emotional validation and have found that since I've stopped looking, I've invested myself in loving others where they are...not being a dormat or allowing someone to continue to sin against me by being chronically abusive, but just by being "in the moment" humming along, happy w/my Best Friend, who is God.

And He has brought people into my life to love and be loved by....friends who DO understand (one esp close friend has apnea too!) and a wonderful husband and children....And the people on this board sis....like you.

When I think about it, how cool is it that my dh works second shift? His natural schedule is to get up 10am ish anyway so it works fine w/my slow start in the mornings! Although since having the cpap, I'm hoping that w/time I'll be more revved up in the morning eventually! I am also praying that as I feel better with time on the cpap and my brain continues to improve I'll be able to find some 2nd shift work to ease some of the burden from dh. Love, Terry

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