Waiting/wanting to die
To be so conscious of pain… Every movement and every moment brings a different level of pain in a different area of body… stabbing hip pain, burning rivers of lava in your sciatic nerves down both legs. Pounding hot ankles with cold tingling toes… spasm as the spine hits the nerve from moving slightly on bed, neck muscles screaming from holding your stupid head up. The back bone lies uselessly in your cavity only for your hips, knees and feet to lump it around like a dead weight corpse, every footfall is exhausting and dangerous for fear of falling and shattering my brittle dead spine. I’m so used to tears springing from no where, sometimes momentarily other times sobs that course deep into my chest it’s stupidly common place now… the pain “may lessen” when the calcification of the spine is over but when that is continues to be unknown and then I’ll probably grow bones spurs that will need shaving off from time to time… even from my eyeballs as I discovered today as calcium was scrapped off to try and relieve the blurriness… I can only eat the blandness of foods and if I cheat I ALWAYS pay for it… my balance is for shit … I go to bed in pain, I wake up at least 3 times in pain … I spend 3 to 4 days a week in specialist waiting rooms … I take 24 medications A DAY to keep the pain levels down to 5 or 6 out of ten … I told my mother today that if it’s still like this in a year, who would want to be alive…? She told me I would it be selfish to kill myself! But is it selfish to stop the pain? I don’t want to further upset anyone but really as harsh as it sounds… people may miss me but I would not miss them because I will be dead and the pain will be no more…
Thank you
it’s a battle every day but head space is a bit better if late… just wish I could chop my feet off most days as ankles kill me and now it’s seizing up in my neck No. Never think that. I did for a while but fortunately came through it (enough). Some days (a lot) the pain is unbearable, my digestion agony, the incontinence, the brain fog, the eyesight problems etc BUT please please never give up. Ever. Life can still be good in its own way. Life IS good. Promise x
Patti B
Teaguemoore I know exactly how you feel but please don't let it defeat you. I've had chronic pain for decades and when the pain went to my hips it so bad I did'nt think I'd make it, then my sacrum joined in and it was a real party. My brother has it too and when we talk we don't even mention our problems because we know. Sometimes we even laugh about it so we don't cry. The pain is there but I don't want it to defeat me.
When I feel really down sometimes I come to this forum for support. Please don't give up on all of us. We're all trying our best.thank you i know what you mean about hips, I can’t even sleep on them anymore and walking feels like weights tied to them 🥰🙏🏻
Thank you, the meds are helping a bit better lately. I was told to avoid yoga as I have limited flexibility with 90% of my spine frozen? I do physical therapy and ostho twice a week and it helps with muscular pain. Part of my problem is I’ve just been diagnosed at the age of 55, they’re saying my AS is too advanced for any treatment now… I’ve started meditating again seeing I can’t see much it’s a relief to close my eyes… thank you for your message it helps hearing from others who understand.
