Last night I barely slept. In fact I can’t remember a night that I get more than an hours sleep at a time, without waking in some sort of pain.
Today I am literally emotional from the pain and struggle.
My joints have never been pain free from RA since… Well I don’t remember when, actually.
My tooth has broken from the damage the Sjogrens causes my body; and it throbbing away. I will go to the dentist for a helping of more pain later today.
My dry eyes and dry mouth causes me to wake every few hours to apply new drops and moisturizers.
My ‘accident’ in the wheelchair from smashing my legs on the weekend have rendered them black and swollen … And don’t they throb!!!!
The cysts on my finger hurts so much I can’t move it. I only wish I wasn’t right handed!!!! Although, I dabbled with drawing with my left hand and it was quite better than a squiggle.
And to top it off. My bowel and period pain have been the final nail in my coffin. Metaphorically. I am in constant, unrelenting, unforgiving and unbridled pain.
Pain. I actually think that word is completely inadequate.
I am tired of it! I am drowning in it. I am completely and irretrievably …. Over it!!!
The saddest part is that if I were to talk to another doctor he would look at me and say … Wait for it … “You are most likely depressed…” And offer to send me to a psychologist or psychiatrist of his choosing. There is the door. Thank you for coming. Kaching! Thanks for the $300. “Next!!!”
The Twitter world served up the term “justifiable sadness”. It’s true!!
It’s hard to believe that the same medium that gives us daily Beiber updates actually gave up this pearl!
I am justifiably sad. Reacting to pain and loss. Grieving. Fed up. Angry at the ignorance and condescension.
I am so many, many things.
I am in need of relief that will never come.
I am losing the fight for control of multiple body and how it works.
If I had been attacked people would be more understanding of these feelings. However the fact that the attacker is inside me is literately living with the enemy.
This year is one of those years that has tested me and my partner in so many ways. From health (mine and his) to the loss of a loved Neighbour. It has been a very bad year. To the average person on the street, the fact of a job loss would be enough for them to call it a bad year. (Trust me I have had calls like this from friends…) however, I and many like me, loose so much every day, every week, every year. And in return for this we are isolated. Prodded. Disbelieved. Shunned. Alone. And told we are “… Probably depressed…”
Lately because I have dared to defend these feelings and try to send a message of “be proud of your struggle and don’t let people make you feel embarrassed of your fight …” And I spread this message to my fellow Autoimmunes. I was gutted to have them turn on me and some say that my writing is dark and negative.
I guess I can’t win!
I actually thought I was trying to help and defend our position…!
Well. Dear reader. I am at a crossroads or where and what to do. Do I go on as advocate or blogger or return to the shadows again.??
Time will tell.
First I must try and battle some very big fires before deciding.
Thank you for your loyalty and for your constant feedback and kindness.
You are amazing in my book. My only hope is that I have told you enough!