The darker side of Lupus #14

Is when after a couple of 'good' days.... (less pain and able to potter, stopping every hour rather than every ten mins.. lol)

My body decided, at 3.45 this morning, that a massive Costrochronditis attact was due, rendering me on the floor, on all fours, projectile vomiting with every spasam, racing heart, breathlesness , grasping my boobs, chest and right lung because it always feels like a heart attact.................... I dont call for help........

These attacts happen daily for me, they just vary in intensity and I cope, they cant explain why and to be honest I dont really care why anymore - its just part of Lupus (standard line when they have no idea what yo say or how to help)

Its now 9.00am and I am physically and mentally exhausted and unable to move from the sofa without severe vertigo and nausea.

I have developed a routine that works and 9 times out of ten it workss well....BUT when it gets so bad and I can no longer cope, usually after a week or so of intense 3/4 daily attacts, I have to ask for help and use my triangle of care, gas and air, last time was late april (because lupus cannot attack a gas), intravenous paracetamol or paracetomol suppository (very ladylike...) and extra codine. This works for me and stops me being admitted to a and e, stops me feeling guilty for taking up space and ebables me to stay independant with my care.

BUT asking for that help, knowing that your triangle of care will bring the attact to a swifter end, is so very hard....because after 20 years of trial and error, its the gas and air together with the paracetomol and codine, that stops the spasms, which in turn eases the pain which is caused by my body over reacting......... no one knows why, it just does.

These are the hidden symptoms, symptoms we all suffer on a day to day basis, in verying degrees, afraid to admit to anyone that the pain, frustration, breathlessness, tingling, spasams etc etc, are worse than they are because we feel like the habitual broken record.......

So here we are again, resting, waiting for my body to give me a break or for the attack to re start, for another urine infection, another kidney infection, a day of jerking or sickness, etc etc, whatever it throws at me, I will cope with without calling or asking for help.......because I dont want to be made to feel like a burden again, on the nhs, my dr, consultants, 111 or 999, which I get every time I really do need help.

Just because there is no ryhme or reason to my lupus or my symptoms, does not mean they are not very real, just because the world of drs, consultants, hospitals, renal and rhmies have no idea why, what, when or how lupus does what it does when it wants too.......I am STILL a human being and deserve not to be afraid to ask for help,

yet I am.........................and I rarely do.

Tomorrow will be better, the pain will esse not because of anyone.......BUT BECAUSE OF ME AND MY ROUTINE.

And that gives me the strength to know that I will be ok.

May your pain be less and your happiness be more.

Love as always

Mandy. X

6 Replies

  • 🌹💐🌻😘😥

  • Sending you understanding gentle hug Mandy and wishing it all calms and eases sooner x

  • Love and hugs to you Mandy xxx

  • Sounds apalling Mandy, there ought to be a better way to treat you that's more effective!.

    TAKE CARE and feel better soon. X

  • mandy you realyhave given me a bit of strength here here is me complaining about knees and ankles hands and feet red raw then go cold i wish i had your courage r you able to walk properly to with this


  • You're a strong girl Mandy.

    These attacks are severe eek!




You may also like...