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Then there's that moment you realize it can get worse.


Monday, September 23, 2013

Today's actually worse than yesterday, but in a different way. I feel like I'm coming down with the flu all of a sudden. I don't ever get colds or the flu; I don't even crack a fever for more than an hour for anything (my immune system is really screwed up: I have increasing allergies but it doesn't fight back against real problems like a cold). So this has me worried. I'm hoping my symptoms are just going haywire from the stress, but this is insane.

The symptoms have been getting worse all day. Every single joint aches and feels like they're stuffed full of cactus barbs. TOM has my body thinking I'm a stuck pig (it's never this bad). My intestines were so bloated that I couldn't even bend forward (it's gone down some but still hurts ridiculously bad). I keep feeling like I'm hungry and going to throw up at the same time. In one ear the ringing has almost totally taken over and in the other, half of what I hear is the blood flowing through my arteries (it's a whoosh whoosh that is driving me crazy - my doctors know this happens but have zero idea what it means or what to do about it). My head feels like someone lodged an axe in the back of my head and is twisting it. I can barely move my neck. My face feels like I've gone 20 rounds in an MMA fight and my jaw feels like it's been busted into a dozen pieces. I'm having a hard time breathing because of chest pains (common with EDS). My left leg is continuing to get more numb and less responsive. Every time I move my legs or hips there's explosions of pain at the base of my spine (where the lower back meets the butt) from that freaking dislocation. Every time I stand up or move my muscles want to give out and my brain wants to go unconsious.

Add to it that my mother is a narcissistic b!%@#. I emailed her this afternoon and only said "I'm sorry, I can't." That was it. I am sick of explaining to her why I can't do what she wants me to do when she will just throw a fit about it anyways. It doesn't matter if it's because I have no interest in dealing with her at all or because my symptoms are so bad that I literally can't deal with being around anyone, she will always make everything all about her. She predictably responded in a way that was all about her. It's all "I" statements and guilting me. Telling me she's crying every day because she doesn't know how I'm doing. Saying "we" should put our struggles behind us and be mother and daughter again (she has flat out refused over and over again to see the mental health help she needs to ever be a functioning human being). Most people would read it and not understand what's really there, but I know every trick in her playbook. No person on this planet can go from telling their severely ill daughter that she needs to stop complaining (aka mentioning in any way) about her symptoms and conditions because it is FAR worse to be the mother of a sick child (I was 30 at the time!) so I need to comfort HER, to being the caring and loving mother who will support her child through everything in just 2 years without having sought out professional help. Case in point: she says she's been following some people with EDS online and learning about the symptoms, yet she expected me to drop everything and spend a few hours with her and my father without any thought whatsoever to my symptoms and with no notice. Then when I give no explanation as to why I won't see them it doesn't even cross her mind that perhaps my symptoms were bad enough that I was not physically capable of leaving the house or playing host to them in my own home, because her only thought is that I'm purposefully hurting them! Reading this email just shoved in my face all over again how much my family is dysfunctional and wrong and pathetic. It hurts in ways that there are no words for. This woman has made ME take care of her in one way or another since I was a little child. This woman was never the loving, nurturing, caring, and supporting mother that every child deserves. This is the woman who kicked me out of my own home when I was barely able to walk, was underweight and just starting IV feedings, and I had no where to go - all because I didn't say something she wanted to hear in the way she wanted to hear it! I have come to accept she will NEVER change and has no interest in changing (she says she's not broken so she doesn't need to be fixed - it's up to everyone else to do what she wants when she wants it in the exact way she wants it without her ever having to explain anything in any way). I am DONE expecting anything from her. I hate it but it is what it is. I will not ever count on them for anything of worth. But to have this email be thrown at me while in the midst of yet another massive kick in the teeth (see my last blog) just makes it so much more profoundly painful.

Tomorrow I should be calling new lawyers to ask if any will take my case. I should be calling my orthopedist to see if they can see me about this dislocation that's screwing up my leg. I should be doing paperwork. I should be working on items my therapist and ARMHS worker wnat me to work on. I should be packing up my house. I should be cleaning my house and changing the sheets on my couch/bed. I should be doing so many things. All I want to do is sleep through the entire day and pretend like the world isn't crashing in on me.

I can't stand feeling like this. I want to be able to take care of myself again. I don't want to have to rely on others who aren't all that interested in helping me. It's disheartening to know I'm only 32 and my symptoms will continue to progress the rest of my life. There's no hurt quite like that of knowing that the people who are supposed to love you and support you the most are incapable of doing so and put requirements on you that you can never and should never have to fulfill. Every dream, hope, and wish I've had for myself has been stolen away by a stupid genetic condition that most people don't even know exists and many couldn't care less about. How is it that so many people can expect and demand things from me when I could easily lose consciousness, fall, hit my head, and not be found for days or even weeks because no one would even know?

Then there's that moment you realize you've fallen to pieces because you're not as strong as you pretend to be. There are only so many battles and challenges one person can face on their own before they have to call uncle and focus only on surviving the most pressing problem - the physical symptoms of faulty DNA slowly destroying the body. So I'm going to try to force myself to stop crying, pop a few ribs back in place before they make it impossible for me to breathe, and try to sleep off some of these stresses and symptoms. Everything else will have to wait for another day.
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  Member Comments About This Blog Post:

LEWISHBLOVE 9/30/2013 3:13PM

    I don't have the words to adequatly say what needs to be said, or what you may need to hear. I can tell you that you do have a family that cares, here at SP. I feel though that we aren't enough, and I so wish that I could help provide you with the money/care/means to be able to take care of yourself & your needs. My thoughts and prayers are with you always, love & blessings emoticon

Heather

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RISINGBLUESTAR 9/28/2013 2:10AM

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JOURNEY1986 9/24/2013 11:13PM

    Your story makes me lose faith in so many things: the healthcare system, the law, professions who are supposed to be there to help, etc, etc. I just don't understand how so many people get money and attention and aid from the government who don't need it but someone who needs more health care isn't getting it.

I know that if there was anything that can be done you would have thought of it by now, but it just feels like how can there not be something more to be done to help this situation?!? It makes me so mad!

I'm not religous, but I do have faith that things happen for a reason. I hope the reason for your struggles shows itself soon

emoticon emoticon

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MISSCUS 9/23/2013 6:08PM

    Geesh, it seems like one bad day after another. I understand, only too well. Maybe not to the point you do, as my issues, even though are disabling, are not to the degree yours are. I know you'll likely never get better, but I do pray for you to have a meaningful life, somehow, someday.
Crap, I can't even say to you"Things have to get better, they can't get any worse." like I've told other people at different times in my life. I don't think I really know what to say to you most of the time, because I've always tried to say things that made people feel better somehow. In your case, I am speechless. I am thinking that is probably why so many people have dropped your friendship, they don't know what to say or what to do, and they know they can't make things better for you.

Proud of you for taking a stand on your familial boundaries and told your parents "No." Period. From what you've said in the past, they'll never "get it" about you and your needs and their responsibilities toward you as your parents, EVEN THOUGH you are 32!! Mentally, your parents are probably much younger than you are. Maybe they aren't even past teen age in growth/maturity.

Hey, you know my phone number if you ever want to just rant I'm a good listener...HUGGS.

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MOM2ACAT 9/23/2013 4:56PM

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NPA4LOSS 9/23/2013 10:44AM

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SHERRYGAYL 9/23/2013 10:28AM

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