I am sick and tired of people trying to rule my life. If i dont have enough issues without not being able to make any decisions without them being contested at every point.
So yes I went to the ball last night…. I felt a bit like cinderella when the beast came out at midnight ha ha (it wasn’t midnight) but you know what i mean.
I now find out that apparently mum was so cross last night cos when pauline came to the door she said “she’s fitting, she’s fitting!” mum was rushing about getting her coat and bag thinking she was coming to get me and then i was there… i wasn’t fitting i had had one fit , one seizure. i was ok and i was home. Slightly dramatic in the way pauline started her introduction had mum on even higher alert!
I was so told off last night I felt like a little child. This morning no different. I was getting more than the third degree. I have a gig to play at this afternoon (sunday) and I am going, Yes ok my tolerance without oxygen at the mo is incredibly bad, bout half our to an hour at the most but today its been basically non. Had to have oxygen in all day. Well obviously mums not happy bout me playing at a concert blowing into a flute but you know what I want to give it a go. I dont even know if i can play with oxygen but if i can without effects I will. If not its a lovely sunny day and I can sit and watch the rest of the band. Its not the end of the world. I will deal. I do not want to be cooped up in doors on this lovely day with mum moaning on about me and life and how I should be more careful.
CAREFUL ! ! well how careful can you be with epilepsy ? it is unpredictable… you never know when the next seizure will strike. The only way i can be 100% careful is if what? i stay in bed and dont bother moving? that way i wont hurt myself (oh but then again i may suffocate myself on the pillows!) there is no 100% way to be careful with epilepsy. Its unpredictable seizures that strike you down at any time.
Without putting everything in life on hold which is ridiculous and like i told her i may as well be dead anyway then …. I just need to live.
Well I tried to talk to her. after all she is my friend as well as my mum. We normally have a ok relationship and are pretty close. I started to talk to her and try and get her to see it from my point but all I got was shouting about all I am doing is thinking of myself and Im being reckless and stupid and pushing it. Im not pushing it im just trying to live while I can i said. from this i got “well you wont be living vey long at this rate… your going to kill yourself” !
Well what can you say to statements like these!.
I was really upset that she couldnt see it from my point of view.
I put across that just let me finnish what i want to say..
When you were my age you were travelling all over the UK. You were married, had a job and a life.
now look at me. My partner who I was going to spend the rest of my life with left me because epilepsy became to much trouble to understand and he was a nurse! my next partner couldnt understand I couldn’t travel all round the world cos i couldn’t afford insurance and taking all my meds means alot more preparation than oh lets go here tomorrow.
Im a fully qualified nurse who has given up her pin number because she can not pass the occupational health assessments (not to mention I had just been accepted to my dream job in nursing! )
I have been stuck at home since being taken into intensive care where I nearly died.
Ive basically lost the sight out of one eye and live in a constant un-knowing of when the next seizure will strike.
You lived your young life with nothing hanging over you. You never had to worry that your body would let you down. You never went into hospital… Ive been in and out of hospitals since I was 4 years old. You see it from a mothers view, you wont even try to see it from mine.
I do not want my life to be “Just” full of hospitals, pills, injections, oxygen and all the other medical stuff. I want to have the good bits too. I can see it from your point but you need to see it from my point.
If I die tomorrow I want to die with no regrets that I wish i’d done that or this. I want to do what I like and love while I can, when I can. I have no way of knowing what the future will bring but while I can do things I will.
Anyway I went to the concert and I managed to play with oxygen. It went really well and i enjoyed it.
When i got home though I had another argument as mum and dad started moaning a me.
I was being told how much i was hurting them – they could not even see how much they were hurting me more than they could know. I couldn’t bare no more. Im not allowed to go anywhere on my own.. haven’t since being in ITU the first time as Drs say its not safe. Despite this I got dressed grabed my portable oxygen and ipad and went out …. Im not saying where I went cos its my place to get away. Im not normally like this I have only once done this before in the last 4 years I need to be with someone 24/7. However this really was a get out or go mad situation. I was so so upset that they would not even try to see it from my point of view. I just sat and cried for a long time. I then reached out to a really good friend. Amongst this mum text me and did in her words did say sorry. I waited for a while before I went home though… I was actually enjoying the being on my own thing. it was nice to be alone. The sun was setting and it was beautiful, still and quiet.
I came home exhausted though. I went to bed.