I have recently finished reading "A girl behind dark glasses" a book written by a ME sufferer that I couldn't reccomed more. I'm going to write a review on it at some point when I feel I can find the right words. I have also just finished listening to Miranda Hart's biography "Is it just me"? after reading/ listning to both books I came to a realization that I haven't grown up the way other people my age have mostly as I haven't had the chance.
Until about 2 years ago I thought eveyone loved me not because I thought I was great but I had a very safe childhood I've never been deprived of love. I was such a innocent child inside being honest with you I still mostly am. I lived in a saftey bubble of my own world nothing matterd even being ill I could take myself off & make stuff up. Eveyone was innocent I wasn't one to watch the news,the bubble I had put myself in was one of safty but not only that when I got sick I didnt dwell on being ill or think it was a problem I just made stuff up. Stuff that in my mind had to & would happen no matter what else happend.
What I told myself was that "Youre ill but somthing good has to happen to make up for it" the thruth was that I had this imagination & atimately I belive it made me insane but I was so happy inside my head that it didn't matter that to eveyone else I looked really creepy. I also didnt think I looked odd at the time making the whole thing more odd.
One of my biggest fears & what I would say still is was being left not that I would be but I belived in would so inside my head I was in the future married because if I had love Id be fine atleast my brain thought that.
Anyway I realized I was doing completly the wrong thing had a brakdown for a few months over how my life was all wrong & how all men hated me. (tbh this is somthing that happens way to much especially when I feel really ill)
At that time is when I started to realize that not eveyone is gonna love me or even like me at all. I started looking back on my life & realized how many people have given up on me or rejected me for whatever reason to me it was because I havent ever been exactly normal I was ill then & Im worse now. I wont ever be a healthy person I started to realize this does have big impacts on my life as well as where my life goes not only now but also in the future.
I started to wonder why it was me or what I had done wrong. I watched good girls revolt & as much as I loved it I think I forced myself to watch it to scare myself so I never got close to a guy ever again. I'm also now super freaked out eveyone hates me I couldnt work out where any of this came from even though I have been trying for the past few years.
I now belive it comes from not having a teenhood that was normal because I went from innocent kid & the thought eveything happens the way you want it to or works itself out to falling inlove,crashing & burning. I havent seen normal realtionships only ones on T.V,books or films I havnet had crushes other then ficotinal ones or celebrites & I think that has a big impact. Also I only watch kids films where happily ever after happens everytime noone is ever left on unloved by whoever it is they love (apart from that scene when Hans leaves Anna to die). I know nothing about anything love wise at all. I can honestly say I have no clue same with teen partys getting drunk ect I have no idea what its like to be a normal teenager.
upon reading "A girl behind dark glasses" I realized I probably thought all this because I felt so alone my child like mind belived in eveything my head told me. I belived I'd get better or that somthing would happen to make all the pain I felt okay. Life isn't like that at all the really world isn't that great people get hurt, killed commit crime ect.... there is alot of good but also so much bad stuff that I now cant unsee or ignore.
Seeing the thruth for me atimately means that I wont fully recvover from ME because only 5 percent of people do.
I might get better than I am now but I probably won't ever be normal right now I don't see myself ever moving out, if I can ever work it'll be a few days a week & I probably won't be doing what I want to, right now it all seems impossible.
But I do want to give chronically ill teens or even adults that chance to meet eachother, a chance to grow up because learning all the stuff I did the way I did dosnet seem right. I also want to let them be eduacted in a safe place where there is no judgment or no care about attendance. I want to let them sleep of they need to or to see them happy with no pressure surrounding anyting they do.
I would like to point out half of this was written in a super upset sate of mind one where I was super confused about life at about midnight I have thought about all of this an awful lot since especially after Miramda Hart's book on her own life. Its also good to learn about other peoples life directions because the world pushes so much for ceartian life mile stones or things that should be completed at certain times.
Having been so ill I have done hardly any of these,these things mostly being education based such as exams ect... at 14 I had my life planned out with all these milestones in it on getting ill the carer & school stuff was ditched for just marrige upon realizing I was ill until now I had no clue of the direction of my life I still don't but I do know all these lists are utterly stupid & I won't be taking part in them.
For a start ive missed the school stuff at the right age anyway im 19 Ive never been on a date Im not working or planning to anytime soon (because I can't otherwise I would love to get a job)
I just don't doing eveything in the order eveyone expects you to & there's no pint in stressing about it right now most things are to much I don't see myself I a realtionship anytime soon i've only been inlove once but it completly destroyed me right now I'm not ready to put myself through that again as its way to stressful & casuses way ti much pain & suffering. but I do plan to try & do more charity stuff.
I also want to do resurch into diffrent medical conditions going on to hopefully write short medical childrens books about kids going into hopsitals.
I would also like to write Childrens fantasy stories but based around medical conditions because I don't feel like there is enough of this kind of thing around. illness can be very isolating especially if you dont understanf or only partly understand. I also still want to set up my school for chronically ill children,teenagers& maybe even young adults.
One of the key things is to keep busy I know what its like when you feel like you cant keep busy youre either going to get depressed or find ways to keep you happy but most likely the wrong ones.
So in summary as this seems to be extrenly long I have learnt or realized what I suposse I already knew nothing has to be done the way most people do it. I somtimes wonder what the point is in trying if I seem to have failed eveything I have ever tried the thruth is I haven't people have failed me I havent failed them Ive put 100% into eveything I have ever done or tried.
That's got to be worth somthing. I have realized that I need to stop getting so freaked out about older life noone expects anything of me but Im used to expecting way to much of myslef. I hate my imagination for the way I feel its betrayed me but of I can use it for good then I can turn that around. I also need to stop thining people care about me as much as I care about them,most of the time they probably don't but whatever happens I know I can't give up on what I want which right now is making sure sick kids know they arn't alone.
So right now all that matters is getting better & having fun eveything else causes to much stress.
