Hi my name is holly I'm 28 now and ever since I can remember pain has been something as integral to who I am as my name or date of birth. I remember thinking I was different as a little girl because all the other little girls had beautiful long hair and even at the age of 6 I still had but a tuft of baby style fluff. I remember wondering if it hurt to eat and go to the toilet for everyone else, but I never complained and I thought blood in the toilet was "normal". After many years it turned out I had coeliac disease and I was missing a valve in my oesophagus causing acid to nearly destroy my food channel, which needed major surgery to repair.
Once I came into teenage years and periods began another element of pain was added as I frequently developed ovarian cysts and suffer through 10 day periods (you'd never seen so much blood ) appearing that I've developed endometriosis like my mother. So once a month and during ovulation I struggle to get up. My legs feel like they are full of lead and my insides are being stabbed and twisted by some evil entity. It feels like hell on earth. I want just a nice peaceful, restful sleep during these times but alas the pain says NO. ( bleeding all over everything I own isn't fun either)
More recently, my facet joints have all but been destroyed in the thoracic region, and by what? A rare connective tissue disorder ? Because my body loves to dislocate my shoulder which has already somehow developed calcification and bursitis. My knees laxate and oh how my nerves around the facet joints have a party! It's fun not to be able to play sport, sit for long periods of time and get a restful sleep.
I wet my pants now possibly from the bouts of endometrisis ( an infection I Aquired through stopping a massive bleed) or something else.
I have trouble absorbing food. I have the flexibility of a 70 year old woo hoo! And my joints ache, my face aches - did I tell you my sinuses are fully opacified ?? Oh, that doesn't matter because "who cares" that's not a big deal. Sometimes it is.. Because I can't smell or taste anymore oh ..it feels like I've been repeatedly punched in the face, but that's ok. I guess.
So apart from my body feeling like I can no longer go on, and crying for sweet mercy because my entire body feels like it's been set on fire. My thoracic spine constantly feels as if it's being slowly crushed and the constant nerve pain, feeling as if I've been punched over and over again in the face and ovaries. My shoulder, as if it's been unhinged and re set in a fascinating position while a wave of bruising covers my chest wall. My legs filled with led and aching to their very core. Being incontinent half the time and loss of half my senses. ( not to mention not being able to eat half the food on the planet) IM OK!
I can handle all of what life has dealt me because I'm a big girl and others have it worse. But I CAN NOT handle the judgement ! The "but you look ok" and the "but you don't need those nasty pain killers". Guess what? They gave me some quality of life back! I can get out of bed! Just give me a little grace. Let me have tools to cope with what is a hard enough life of pain and judgement.
I have big dreams just like you! I have a daughter who I want to have adventures with! I'm not angry that you can function and I can't ! I just want some understanding for those in pain like me. It's not fixed by a pill. I wish it was! I wouldn't wish this on anyone, but please just wish me well.
This is for the Warriors of pain
The doctors who fight for us
The supporters and the carers
And for those who may now choose to show compassion.
Understanding and love for all. Regardless