Bit random, decided to share and hopefull... - Endometriosis UK

Endometriosis UK

70,713 members52,155 posts

Bit random, decided to share and hopefully hear some interesting replies

xnanookx profile image
6 Replies

Sometimes what I really want is to have somebody say ' how are you today?' And as I reply 'I'm OK' for them to either say 'I can see you're not would you like to chat about it?' Or 'you know blah blah blag normal stuff' I find it pushes my buttons, rings my bell, lose my $h!t. The tilted head, puppy dog eyes, and the sad face literally has me biting my tongue in frustration followed by the obligatory 'are you sure? You look a bit peaky, you look tired' at the second reply of 'I'm fine!' Just gets the exact same question but this time worded slightly differently but more insulting, more personal, bringing my confidence down a notch at a time. I just don't know how to lie convincingly...

Lying is its own paragraph, I've always been an advocate of trying always to just be honest, little lies create big problems, but expressing myself without getting frustrated in the process proves tricky occasionally, I'll say 'yeah' to almost any question or favour asked of me, saying no in certain situations would cause problems, arguments, discomfort for me because the explanation would be too difficult for me to explain, I don't want to upset this person, no matter how much I don't want to do this I'm gonna do it, good old dependable me, will give you my last quid, the shirt off my back. Reliable as ever...

Now reliability, I've learnt that saying no and meaning no are two different things, I still can't say a defininate no, I don't know why, I say 'I'm not sure, probably' I'll be kicking myself as I'm saying it, I'm so fed up of pushing myself to please other people, people I don't even particularly like very much. I'll try my damndest to for fill my duty just because I don't want to have to say 'I can't I'm in pain, I can't blah blah blah' I just don't want to give anybody anything to talk about, I'm fed up of being cannon fodder of gossip. I don't want to give out personal details to these people I'm not sure I can trust...these people are all of my family, my friends jumped ship a long time ago! My paranoia isn't just limited to family though, strangers in the street, I'll be walking with my head down wondering why this person is staring at me...can they see my discomfort? Do I look as bad as I feel? 

Special occasions, I don't do special trips out, nights out, weddings, funerals, christenings, birthdays, the stress in the build up to knowing I have to spend that whole day wearing heels, make up, jewellery, something that I would hope made me feel partially human, I don't do sexy these days its big knickers and an ugly bra if we go out, when I'm at home I wear pyjamas and no underwear, my own personal discomfort is increased by the pressure off the elastic, I swear you come round to my house my hair is thrown up in a dodgy scraggy bun and I'm wearing my PJs and I'm always bare foot I can't bare to wear socks all the time, I like cold feet which makes my pain worse, I'm my own worst enemy! When I get these invites I don't ever reply, they already know I'm gonna say no I can't take another flair up, like really bad, I'm talking anxiety, hot and cold sweats, pain in all of my joints, my legs hurt, my arms hurt, I get migraines, the pain in my abdomen tears through me the night before and I'm rolling round all night crying, all because I know I'm not gonna make it through an entire event my pain threshold just isn't that big, turning up drugged up to the eye balls is not a good look for the priest to witness (or the big man) me stumbling in my heels, my eyes rolling and my pain is only half buried so its spiking upwards and downwards, I don't want to clutch my vagina, in pain, in a church...I don't want to not be able to talk to people for being on the verge of tears and the lump in my throat is choking me. I don't want to listen to somebody else's kids screaching or crying, I'm childless the ONLY good thing about it is I don't have to listen to noisy kids and I get to sleep 15 hours...I could be comfortable and happy sat in my bed surrounded by my dogs and things I love, I can use my phone all night without judgement, I can watch crap TV with my boo, and best of all I am unaware that people are talking about me, I don't feel dowdy, ugly, or judged!

I can't dodge everything, I get the delight of my 79 year old nan and my auntie and uncle with my cousin coming up EVERY Saturday morning to, your gonna like this...to walk round Morrison's for an hour and a half...they phone me at 9am and expect me to be up, dressed, washed, dressed, and smiling by 10am. I really don't mind being woke up, having to fake a smile, what I don't appreciate or want to do is run my Saturday morning like a military operation, it takes me SO long most mornings to feel half normal, able to walk upright, the pain has me hunching like gollum :( I some times feel jealous of gollom, he's so ugly he's cute, I just feel like Fiona from Shrek before the transformation. 

My own transformation hasn't completed yet, I'm like a butterfly inside the cocoon, the first part saw a normal girl become a shell of her former self, she retreated into a shell, unappreciated and unnoticed. This hibernation, of sorts, has already produced a lot of changes, this has been the best of times, I got answers, I know who's worthy of my love, I know who I should cherish for their whole lives and count every second with them as a blessing, then there's the bad, this disease, people who I've lost that I really wanted to be a part of my life, depression. It made me stronger than I ever knew I could be, it made me brave in different ways, I don't fear the prospect of operations, I've embrased them, they are a necessary evil that I must face on! My own demise has been so much easier to talk about recently, it feels like death has become less of a fear it's made me realise how precious life really is, to be healthy is my only goal right now, one day at a time and I'm fine! I wonder what my final transformation, being pain free and healthy, will bring? I can't wait to meet that person she will be a formidable woman!

People in general have become an irritation, I don't want anybody touching me, rubbing my tummy and asking 'how far gone are you?' Is NEVER acceptable! I am sick of being asked 5 times if I'm OK in a space of 5 minutes, if I look bad, I feel bad...I don't want to talk about it all day, we have the same conversation every time I see you, you obviously don't listen so just leave it! 

...Sometimes I just want a normal conversation to take my mind off everything I'm feeling, it's hard enough to not cry just ssshhh...

Written by
xnanookx profile image
xnanookx
To view profiles and participate in discussions please or .
6 Replies
Sam341 profile image
Sam341

I can relate to every single word you have said! (Apart from the children part, I have the noisey demanding children, demanding partner and I get 5 hours sleep) 

The only thing missing is having to answering the question from Dr's "so what do you think we should do?" 

It is reassuring to hear I'm not the only one who feels just like this! 

xnanookx profile image
xnanookx in reply to Sam341

Don't even get me started on Doctors :( I'll save that little doozy for the next time I have to endure a conversation with, *putting it very politely*, this gentleman....I'm using that so loosely I'm actually smirking as I write this. The air is usually blue for a good day or so after that pleasure xx 

Allyson1 profile image
Allyson1

100% all of this! 

The worse my pain got the harder I found it to interact and make small talk..the world just looked so bleak. If I'm doubled over in pain 24/7 and sleeping several hours a day and it takes me half an hour to get my socks on and I cant have sex or have children and I'm losing feeling in my privates, and what's the rest of my life going to look like, there's just no sense of normalcy, or calm, or anything being ok. I didn't feel part of the real world anymore.

Before the pain was 24/7 I would at least have good days with mild uterine cramping. With makeup and nice clothes on I could pretend I was normal and pursue my interests. I kept my pain to myself. It ate away at my psyche, but I didn't alienate anyone.

I'm not in pain from endo 24/7 anymore, and no thanks to surgery or hormonal drugs, but I have several related health conditions that got triggered along the way. I think there are "natural" interventions for endo that make a tremendous difference, however I came to them after a lot of damage was done. 

Miss_E8 profile image
Miss_E8

Completely agree with all of the above! Hate having to say I'm okay when actually in agony and just trying to get through the day! Hate trying to explain myself to others when I actually don't want them to know my personal health details!! 

You're not alone. None of us are. But it doesn't really help does it, because at the end of the day we have to just curl up and wait for the pain to go one way or another. 

Simo7 profile image
Simo7

Ditto! Just one correction: you ARE already a formidable woman. Brilliantly written chick xxx

xnanookx profile image
xnanookx in reply to Simo7

Thanks hunni, I don't know about that :/ I'm getting there though, everyday I'm finding it easier to express myself xx

You may also like...

A newbie just hoping for some pain relief advice.

it is oramorph (something I really don’t want or like to take!).The past 2 days I have been in...

This is a bit random but do hospitals have lockers?

I’m sorry I sound so stupid right now haha but did you have a locker or anything to put your stuff...

Need some hope?

sometimes they are and oftentimes it’s all we know. Did you know that male scientists named all the...

New to this so just a bit about me and would like some advice post lap & mirena x

endo, with the pain I'd been saying I had, something would have shown up. After doing my own...

Newly diagnosed and would really appreciate some advice/shared experiences...

in pain and don't even know if I can have children. Nothing much has been explained to me, just a...