My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Monday, March 31, 2014

In lots of pain, with loud asshole neighbors

From "FB You Know You Have EDS When"
My pain levels have been horrible the past two days!  I'm not at the level of a flare, but I was stuck in bed most of the day yesterday.  I'd wake up in pain, and all sweaty, and then I'd somehow fall asleep again, only to wake the same way again.  Today I've been lying on the couch, reading and napping.  Sometimes I'm at a loss, and wonder why my life is this way, what I have done wrong, so that I can fix it.  Unfortunately, there is no "fixing."  There's only surviving, or giving up.  I don't ever want to give up.  I've been in my wheelchair a lot this past week.  Our house isn't very handicap accessible, and my chair won't go everywhere.  Actually it only goes a few places.  It can't get all the way through the living room, and it can't get in any doorway, like the bathroom or the bedroom.  So I use my cane to try to make it the rest of the way, often DH helps me stand and lets me lean on him until I get to the bed, the couch, etc.

I was in extra pain lately anyway, but it really stepped up hard after a shower I took that left me so fatigued I couldn't even move a finger, or lift my head.  I've only been that fatigued a few times before.  Then that same night, when I was feeling better, I got dizzy and almost face planted into the glass top table.  After a moment of panic and leaning to my right side, I was able to miss it, but barely.  I barely missed falling on our elderly cat, Sterling.  I ended up hurting my wrists, but that was the extent of my injuries.  Then the next day (yesterday) the pain was incredible, and I was in bed all day.  Today I've only been off the couch three times, it hurts so bad to move.  Typing hurts, but I think writing helps get my mind off the pain.

Our car has been broken down for over a month; it's twenty years old and would cost more to fix than it's worth.  Still, we have to get it running again.  We can't afford car payments at this time, so getting another car is out of the question.  We are both really worried about it.

I love this sign!
Our neighbors are these drunken jerks who play their loud salsa music so loud it rattles the windows, and reverberates in my chest and jaw.  They play every single day.  On weekdays they usually start around 3:00 pm and go to 10:00 pm or 11:00 pm.  On weekends they start around 10:00 am and go until 3:00 am.  They are violent assholes, and everybody in the neighborhood is scared of them.  DH is the only one brave enough to walk up to their house and ask them nicely to please turn the music down.  Sometimes they pretend to turn it down a tad, then as soon as he is ten feet away, turn it up higher than before.  Other times they say "What music?"  Still other times they straight out threaten violence.  We can't call the police for a noise complaint, because the police wouldn't be here forever to protect us from their retaliation.  I even asked DH the other day if he thinks it would be prudent to move, but he said that we'd run into problems everywhere we lived.  It's not like we could afford to live in a nicer neighborhood than this, anyway.  It isn't a really bad neighborhood, but it isn't good either.  We get our car broken into on a regular basis, and things stolen off our front porch a lot.  Still, I've never run into this particular problem in my life.  Loud music is one thing, but this??

DH just got home, so I think I'm going to end.  Hopefully tomorrow will be a better day!

Thursday, March 27, 2014

A rambling, painful day

I'm not sure where to start this bog entry, after so much time since my last one.  So I'm just going to write, and see what happens.  Today is a nasty rainy day, and my joints know about it.  Lately I've been having a lot of back pain, way more than usual.  I think it's from our bed, though.  The bottom left corner of the bed frame was broken by a friend who just plopped down on it.  I'm not sure how it happened, but I think she hit it in just the right way, and it completely broke.  It now drags the ground.  Once that happened, it wasn't long until the middle of the bed sunk in.  So now when you lie down by yourself it sends you rolling to the center.  If I lie down with DH then we both roll into the middle and balance each other's bodies in the sunken middle of the bed.  DH is also having back and neck problems.  Needless to say, we wake up in more pain than before we went to sleep.  So until we have enough saved up to buy a new mattress and box springs, our back, neck, and my hip pain will continue to get worse.  I can't help but be just a tad jealous of people who can just go out and buy one, especially those who can buy a nice one, like Tempur-Pedic.

I would like just one day without severe pain.  I want just one day where the pain isn't so severe it moves me to tears.  If I could have a day like that it would be easier to handle the bad days.  I've had low pain days before, but they don't happen often.

I got my pink recumbent bike!  Keep in mind it's hard for me to walk, so three minutes starting out was my max.  Then I moved up to five minutes, and today I did seven minutes!  I'm so excited.  My first goal is to do ten minutes.  Eventually I want to only have to use my walker on bad days and maybe in huge stores, like Wal-Mart.

There is hail coming down now.  My joints, muscles, collar bones, neck, feet, and shoulders are all extremely painful.  Lately I've been kinda pissed that not only do I have to deal with EDS, but so does my best friend.  My DH doesn't deserve to have seizures.  He doesn't deserve to be beaten up by his own body regularly during seizures.  My best friend not only has EDS, but POTS and fibromyalgia, too.  She's had to have two serious back surgeries and numerous eye surgeries.  It  breaks my heart.  My other best friend has psoriasis, and has to deal with both the embarrassment and anxiety that accompanies it.  Why is that?  Why do these things happen to such good people?  My DH, both my best friends, and myself as well; we don't deserve this.  I try to be a kindhearted spoonie, a loving partner, a kittymommy worthy of my kitties, and an empathetic and helpful person.  I've often wondered if I was a bad person in my previous life, and am being punished for it in this life.  I know it sounds whiny, but what did we all do to deserve this?

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