#just so tired and sad -
#just so tired and sad -
Seen and unacknowledged
I feel so painfully naked. I now know why people who are homeless wear all of their stuff. Homelessness immediately makes you a scourge. It doesn’t matter if you have helped people or if the friendship has spanned decades. As soon as you cross that threshold, you have “rights”, but that isn’t anything you truly get to experience.
The people I always cared about now don’t even acknowledge me in my darkest and most desperate state. I’m begging for my life and people are just watching. Or ignoring me entirely. My best friends.
I feel like I’m behind the thickest aquarium glass. I feel like a case study. How is my humanness not enough for people to care? I am so alone and literally left for dead.
How do I deal with this?
I’ve been ‘bendy’ all my life. I used to amuse people by putting my feet behind my head, etc. I was also a ‘klutz’ and ‘unladylike’ (all the bruises and falls). My parents were the type to tell me to get over it and get on with it. They still think I’m making most of this up to be, as my mother puts it, a ‘special snowflake’.
In my 20’s my ribs started subluxating frequently. I had no idea what to make of it, but found doctors who wanted to forcibly return them to their normal position and inject me with various things in an effort to get everything to stay in place.
I’ve been a dancer my whole life (until recently anyway) and I’m guessing that was what kept me from being all over the place with dislocating things. But when I had kids (early 30s) everything started to go wonky. I had major problems with my lower back during my pregnancies, early contractions and with my last child a torn uterus.
Then, when my daughter was 20 months old, I was diagnosed with breast cancer. Less than a month later, I had had a double mastectomy and started on 6 months of chemo hell. Recover was slow as it always is with these things, but some things just didn’t go back to ‘normal’. I was in pain a lot. My migraines started to be much more frequent. My menstrual cycle was horrid; bedridden pain with both ovulation and my period. My ribs, shoulders and hips started to be out of place more and more often.
I tried to go to doctors and tell them that something was wrong. Everyone said ‘ you look great this must be depression (I’m already on depression meds), thyroid, anemia, insomnia, etc’. It wasn’t any of those and when the blood tests came back normal everyone just told me to get more rest and eat better (are you kidding me? I have a great diet.)
I had to quit dancing when I threw my arms over my head for a leap and dislocated my should over and over again. I tried going back to school to find something I could do intellectually to distract myself and feel useful. I couldn’t write without being in constant pain (yes, you have to do hand writing if you’re taking maths and sciences.)
Now, I’m past menopause and it’s even more awful. I’ve been seeing a great PT for the past 3 years who says I have hEDS but that I should get tested for all the other types. I have a neurologist who is completely perplexed by my now chronic, intractable migraines. But no one else wants to help. My GP just nods and waits for us to leave (I’ve started taking my husband everywhere just in case having a white male in the room helps). I’ve been turned down for genetic testing by the only group in our state researching EDS. I’m past exhausted and utterly miserable. My psychiatrist asked if I had thought about suicide. I told her that anyone in this position would be truly crazy or lying if they said they had not.
What do I do? Any ideas would be appreciated.
What is something new you want to try that you feel will benefit you in your health journey?
I don’t know
Where in your life do you feel most alone? Where do you feel most supported?
My soon-to-be-ex husband dropped off divorce papers for me to sign today (Friday).
It's my 50th birthday on Monday.
This is the person who, one week after I'd put one of my cats to sleep, announced he wanted a separation, failing to mention that he'd met someone else. And that she was married. With a son. Best of luck to them. I hope she does to him as he's done to me.
What situation in your life do you need to hear “you’re doing the right thing” for?