Fed up and annoyed

I'm currently in the middle of doing my dressings as I can't stick this pain no longer!! I'm fed up of every minute of the day I hurt, clothing gets stuck, dressings need changing! EVERYDAY, we live with eb. I'm very down today I'm just fed up of hurting! Even after changing dressings it only brings little relief, that's after pulling stuck dressings off, popping blisters with needles, putting creams on wounds that sting like crazy, numerous different dressings to clean wounds. I'm just really fed up of it today, it's really got me down. My wounds are open and very sore at the minute, it's not just the wound that hurts it radiates around the wound. My dressings don't just cover one part of my body, it's not like pulling a plaster off, this pain is from top to toe and we deal with this everyday and today it's got on top of me! It's driving me nuts, no pain meds work. BUT  me I've had a good cry with mum, chucked the yucky dressings away, take a DEEP breath and carry on. I'm just hoping tomorrow is a new chapter and this feeling will go away. I've got college tomorrow so hopefully I will feel better. I will kick ebs butt even more when it makes me feel like this!!

:/

I'm in bed, all tucked up. Had my meds, hopefully they might work a bit! Especially with on being a sedative! I'm very sore, my right hip is hurting as it has a wound on it. My skin has broken down, my right knee is really sore after numerce amount of blisters, my left foot (ballet foot) has broken down, my left thigh muscle is hurting :/ and I'm super itchy! I'm very tired after 3 days in college and hardly any sleep, I think I've done pretty good BUT it's catching up on me now. Hopefully if I get a good nights sleep I'll be 'fresh as a daisy' in the morning. Fingers crossed. People don't see the pain us ebs hide behind a smile, they don't understand how simple tasks for 'normal' really takes it out of us. They just see the dressing, the webbed fingers and a wheelchair. People staring is horrible! I've got used to children saying "look mum she's got no fingers" but when adults stare it's just horrible. It still annoys me that people stare but I'm old enough to just smile at them and look the other way, but when little children notice this! It's just horrible. People shouldn't be so lazy and stop grouping people 'normal' group and the not 'normal' group, people are different, no one is the same, there isn't a document that states the perfect person should be tall, pretty etc. you are just you, don't let people label you, I say yeah I have eb AND!!!! I still do things that you do just in a different way, just because someone's little don't label them as young. Talk to them ask them how old they are and ask what's wrong! Don't just stare and whisper! Many times I've wished they'd have just asked me what's happened other than stare. 

Any way I've rambled on again!! Going to try and get some sleep. Good night everyone

Annoyed!!!

College are driving me crazy!!!! I've got to take my appointments letters in so they can photo copy them, to prove I'm off also I've got to prove my eb nurse is coming down to see me. I've just had an email saing college want an updated care plan, so I looked through it and found MANY things I didn't want in there and some I didn't find true!  

1. There's got to be a trained first aided in case I choked! I'm 17 I no how to cope I won't eat solid foods if my throats bad!!

2. 'Lauren is limited in her ability to mix socially due to the limitations of her condition' HOW is this true!!!! Fair enough physical activities but to social mix!! 

And number 3 

3. If I'm outside I'm going to catch an infection!!! Where do they get this from! I'm so angry. 

4. They have very sensitive information about my 'tummy' (other people who have eb and look after people with eb will  understand) is published to anyone who looks at this. I don't think they need to know they don't have to do anything, 

College is driving me nuts.

Face to face they are doing there very best but people 'higher' up are stopping me, my mum sitting with me for dinner being one, why don't they listen to me, I experience eb 24/7 for 17 years I no and people close to me know what is best for me! Not someone who has only just heard about eb! 

I'm not backing down I'll go to college for ever if it means I can eat on my own and move without having a body guard. I will prove eb doesn't get in my way, I will do what ever it takes. I come first then my eb. 

Maybe I'll write to the papers haha that will get them moving :p

AND BREATH!!!

Anyway hope everyone's had a good day :) I'm very tired, going to have a cup of tea and maybe some chocolate or biscuits :p and lye down and RELAX :)