A world with friends 2019 prom

On May 31st 2019 I had the pleasure of attending A world with Friend's 3rd Portsmouth prom held in the Guildhall. I'm aware that this was nearly two months ago, but my health has been so up & down that it has been impossible to even think about planning a piece of writing,let alone to actually sit & write it.

Back to the night in question upon entering the guildhall we were taken over to a desk to sign in, then we got given the opportunity to have our photos taken on the red carpet under the world with friends backdrop. Then we were escorted into another room to mingle with guests. One lady even mentioned my previous blog telling me how much she enjoyed it which made me  incredibly happy considering a few years ago I had lost all ability to read & write. To be in a position of being able to pick up a pen or type something out is an absolute joy, I never thought I would regain.

Then came Emma Lewis & Chloe up onto the stage dressed as superheroes followed then by a dinner consisting of a rich tomato soup accompanied by crusty bread rolls, Chicken Kiev with steaming vegetables along with three glorious chocolate desserts.   

throughout courses intervals of Disney themed entertainment were expertly  performed to us by the amazing manic stage productions company, first to step up to the stage,were there wonderfully talented acrobats who not only did an aerial performance but also gave us an incredible fire show.   

neighbouring this a little while later appearing from nowhere a man began to sing a magnificent rendition to "be our guest" from Disney's Beauty & the beast.

As all food was consumed,plates cleared away & entertainment over now came a chance for guests to explore the nextdoor room, a room  filled with chocolate & sweets as well as a photo booth where guests could use props to take photos with their friends.

It was a pleasure to watch children teens & young adults be able to take photos with their new found friends. But it also gave me great happiness seeing people care for them like they had known them their whole lives. It was so refreshing to  experience people taking medication whilst surrounded by people & not have to worry about how it looks to them or how they might wonder what's going on or why.

Before long it was time for more entertainment,Portsmouth based singer Harvey Jay Dogdson played us a marvellous set of covers and originals. When I spoke to Harvey about his involvement in the prom he was the absolute sweetest. He told me he felt “extremely honored” to have been given such an amazing opportunity for “such a wonderful cause”  

Before it was his time to perform Harvey was shown to his own dressing room, had a soundcheck and attend the meal amongst prom goers.

Having performed he was then free to talk amongst guests,Harvey told me that  he felt “very proud” as he was greeted by people showing their appreciation and love for his music

Overall Harvey’s prom experience was a very positive one as he said it  gave him the chance to speak to some brave teens and young adults, whilst being able to hopefully “spread a message that anyone is capable of anything as long as they believe in themselves and always look at the positive side.”

As the night drew to a close it was time to dance before heading home after what had been a fantastic awe- inspiring evening.

M.E 7 day challenge

M.E 7 day challenge:

My life with M.E although getting slightly better, is very limited. There is not alot I can do as I can't sustain more than a few hours of activity before falling asleep. It's very frustrating because you feel like you live half the life of a able bodied person. I don't have any grades so to speak of, I can't go out to get a job. I can't really do much but I do try to do as much as my body will physically allow me to do. So that's a start.

My bad days consist of resting, watching T.V/films or listening to audiobooks. I get very frustrated on bad days especially if I'm flaring up & have no clue why I'm flaring. My family help alot on days like this because they can always make me feel better, social media also helps as I'm in support groups which I find really useful.

But it also shows you what everyone else is up to which when you feel totally awful is really not helpful.

On my good days I try not to push my limits (I mostly know what they are now) but It also makes me really happy to be able to get things done & I'm overall generally happier.

My biggest challenge I have faced whilst having M.E is definitely re ~teaching myself to read & write again. How I did it I have no clue but I'm so glad I was somehow able, I hope that one day I'll be able to help someone else do the exact same thing. Also dealing with people's opinions of me.

After the school I felt like no~one wanted me around. But now I know that not to be the case.

I wish people would understand how to treat people not just people who have illness but everyone. So many people are judgmental or just don't really care. All I needed at my worst time with this illness was compassion & hardly anyone had that in them.

My advice to other sponnies would be to just be you. Do whatever you can & don't worry about what you can't do. Also rest as much as you need to because you really do need it.

M.E isn't all of me right now I'm doing all I can to get better but in the future I hope to be able to do so much more. I really want to set up schools for chronically ill teenagers because there really is nothing around for us except people who really don't or want to try. I also really want to do more writing especially screenwriting

Dear Rare disease

Dear Rare disease

alot of people would say you have ruined my life, in tons of ways you have. Thanks to I have little friends a un finished education & hardly any future job prospects & the ones I feel may be possible one day,lead me to believe my life will be very dull.

Luckily I don't remember much about being ill from being a child but I do have medical tramas some being completely ridiculous. Others not ,but they all make sense one way or another.

Thanks to you hardly anyone understands me or my life. I now have ME & have little chance of full recovery as oy 5% of M.E patients recive this. I know discrimination from being sick & I'm pretty sure I wouldn't get this easily offended or upset if  I had ever had you.

Because of you I slept for 2 years non~ stop. When I awoke the world had moved on, not only that I then developed really weird coping techniques which when I realized were ridiculous completely tore me down & I realized that the world isn't the way I grew up thinking it was.

Over the past few years you have made me realize that my life will always be a struggle. because of you I'm most likely to always have the fear that no one wants

to hang out with me because I'm the problem person, or hard to look after ect... most likely I always be on the outskirts of society as hardly anyone understands me,my life or the way I have to live it.

If I didn't have you I probably wouldn't know this much suffering or the pain of seeing so many of my friends in the same position. I believe you can tell if a person will be successful at a early age. I've always be looked at as the sick one. When people didn't know what was wrong & maybe even more now they do, but still fail to understand.

One good thing & probably the only true good thing that has come from having you is that I know I have more compassion than the average person. Alot more empathy & understanding I also have friends from support groups that I know I am very lucky to have even if they live to far away to meet.

My heart knows that I can't let you define me,I so hope that one day that gets to be the case. I hope one day people will see beyond you. I hope some day despite you, I will be able to forfill even half the things I want to. Until then I'll just have to keep trudging along doing as well as I can.

A world with friends

I debated long and hard about how to start off this blog,all I can do is write from experience. So that’s what I intend to do. I will warn you all that I tend to go off on massive rambles most of the time in a direction completly off subject but I always try to get back to the point, there is always a logical explanation for anything I may include within ramble.

Before I get to the point I feel for this to make sense I need to start at the beginning well what I feel is the beginning. For me it’s the day I was unfairly dismissed from school.

I showed up  after the holidays being told upon arrival I'd left. I hadn't although, my mum had wrote a letter to the head teacher saying I would leave before the last week of the year.

I remember having a  million questions fired at me, then getting taken to do a catch-up lesson, weird really when they were telling me I had left, If they believed this to be true, there was no point in me attending any class. I wouldn't be there to continue.

I went home not exactly knowing what was going to happen, school said they could add me back to the register but the damage was done they'd done what they had so there was no point.

That day I celebrated leaving school by watching my sister playing in the park,My friends weren’t told I had left and I’ve been told by my friends that most teachers didn't actually know.

It was like I had never been there,or even existed. No-one from the school stood up for me or fought my corner,my basic human right of an education, so it was taken from me when all it needed was a slight adjustment. They were also pretty awful at  safeguarding refusing to do my emergency injection if needed, never letting us know if a sickness bug was going around (Throwing up for me means I lose my replacement Cortisol meaning I could potentially end up in hospital) and completely failing to understand how serious my condition.

My parents did everything they could to keep me in school but the school didn't want me there.

Throughout childhood and early years as a teen,there was never moment I doubted my worth or weather or not I was wanted in society. I showed up did everything I possibly could and more yet suddenly I felt a burden to everyone, I started to think I was going mad, there wasn’t any logical reason that I could get through my head to have been treated so badly.

I’d like to add at fourteen I wasn’t like most fourteen year old. I've always had mostly the emotions of a child, I had little clue of the world around me. Other than my own life. For me discrimination was something never to even cross my mind, I believed I could do anything and so was my right to do whatever I wanted. I also didn’t think about being ill even though I always had been.

I think I probably speak for everyone when I say not being wanted is one of the worst things in life because you start thinking you're going insane and that none else could possibly ever want you around. I had many hours to think about all of this.

As a result of school seeing me as a complete waste of space, I felt society also did.   I didn’t feel as If I was to fit within it anymore, unsure if I ever actually ever had.

I looked everywhere for something,somewhere or someone to make me believe that I actually meant  something or was able to belong somewhere,I knew now that most people thought of me as a problem or nuisance. I didn’t have a reason to see anyone anymore, making me more isolated than ever. Hardly anyone contacted me or suggested meeting up. I would of most likely been to unwell but the thought would of been nice. Everyone disappeared,leaving me with little friends.

Social media was my only window to the outside world,It became my best friend, yet worst enemy I still had online friends from various T.V show fandoms who for some reason didn’t leave despite everyone else doing so. But social medias main aim is to allow you to see people's daily lives. I was led at home ridden with hideous pain,sleeping for the most part of the day.

Seeing all the things I couldn't do made me feel like I had failed my existence. These posts left me wondering more than ever why it was me in this situation, why should I be suffering when everyone else is allowed to go off and live their lives?.

Why should the universe still be spinning when mine had stopped? All my plans for the future were in ruins.

I was spending what should of been the best years of my life, unable to lift myself off from the sofa let alone able to go out to do anything my peers were. Being so young I was and still am seeing everyone I used to know being able to study, get jobs, learn to drive and be able to party into the small hours.

That was when I found Friend Finder. My mum sow Lewis on the news ,then contacted him about getting involved in a charity coloring book she was designing to help raise funds for me to get a electric wheelchair.

I myself then watched a few of Lewis’s interviews & was amazed by how positive he was. Despite everything going on

In his own life, he just wants to help others.

Being invited Friend Finder’s first ever prom was a experience I won’t ever forget. upon entering the guildhall  I was surrounded by people sharing similar consequences to my own. I knew that I wasn’t the only person going through the same or similar things to me but seeing it was something else all together. Suddenly I didn’t feel so alone, I already felt as if I had friends yet at that moment I hadn’t met a single person in that room

Since becoming ill I have lost so many friends,friend finder has given me the chance to make better ones with people who understand and value me as a person more than I feel most of the friends from my past ever did. Friendship is one of life's most important things. Everyone needs a shoulder to cry on when needed, someone to be able to cheer them up and make them laugh a little louder everyday. Having someone there to tell all your secrets to or share stupid jokes with is so important.

Over the past two years I have had the absolute pleasure of seeing the joy upon young peoples faces when they start to form friendships and begin to have fun with their new found friends. By helping out with further proms I hope to continue to see people create everlasting friendships and to remain to create table decorations that can be treasured forever.

Now that friend finder is now going global and transforming into a world with friends I hope it is able to reach anyone in need of a friend. This way not one person will ever feel alone.

Medical Tv shows books ,& films that have inspired me this year

I got a email about a month ago asking me if I wanted to delete my blogger, I then realized I haven't used it in months but I had no blog ideas then I thought of this,its a list of all the medical based shows,films & books that have inspired me this year, I also want to do a people/avent one but that will be after the new year as I have only just thought of it. Amyway plz enjoy my list

FILMS:

NETFLIX:A christmas prince: I think the title of this mostly gives it away but to sum it up after his dads death the prince goes off travelling to "find himself" no~one knows where he's gone or anything but he has to come back to claim the throne. So the kindgdom has a press comfrence for his return & loads of press come, only the prince doesn't show so one of the reporters sneaks into the palace pretending to be the princess's new tutor. She spends her time spying on the royals & starts writing a newspaper aticle to send off when she gets back home.
She also finds out a big family secret that could stop the prince becoming the heir & gas to find a way to fix it.

I loved this because it was the first time have ever seen a disabled princess,I also loved how she wasnt petied on & was pretty much allowed to do anything any other princess would do in her own way but not treated any diffrently,I also loved how we got to see her realtionship with the reporter because that friendship helped her so much throghout the film & sequel because any doughts she had she fixed.



Wonder:Wonder is the story of August a boy with facial differences who begins fifth grade at mainstream elementary school for the first time in his life. I really enjoyed this because again you get to see everyone elses point of view about Auggie's illness & not just his side of his story.


TV SHOWS:

Alexa & Katie:
I atually wrote a big blog on this & my love for it do instead of re writing it or parts of it heres the link https://www.blogger.com/u/1/blogger.g?blogID=4192252646603289566#editor/target=post;postID=6375938035549218001;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=1;src=postname


TDG: Theres not alot to say here I just really love the diversity of this show theres so much going on. Not alot of shows have disabled charcters or charcters with disabilities yet this has mutiple. I think its so important to give everyone some sort of voice & for eveyone to see themselves & this show does that better than any other.

KATY: The Katy series was based on Jaquline Wilson's book KATY that was based on what Katy did. Katy has a rope swing accident & ends up in a wheelchair,the show follows her journey for the next few months. My favrouite thing was how we got to see what was going on on her imagination as well as it atually showing her emotions through what she said or how she acted. I think it would of been better for them to have made it into a film instead of a few IPlayer episodes & I aldo think it could of been lonfer as the end seemed a little rused but over all I really enjoyed it.


MY LIFE& Living diffrently I love both of these because they show a variety of diffrent kids doing diffrent things regardless of ability or age


Inventing the impossible: This show was a joy to watch because you could tell all the inventors really wanted to help ,& were not just hierd to do a job they seemed like real people. The stories of the people they were inventing for were also always really well told & that was such a important part of the show,the things thr maanged to do with tbese inventions were incredable,it was such a jolly thing to watch.


BOOKS:


From a distant star: This follows the story of a alien who has crash landed on planet earth & a boy who is dying from cancer. To hide from the humans the alien gets inside the boys body cures his cancer & becomes him. But a team of Space scientists are tracking down thr alien so the alein uses the boys body as a disquies & convinces his gf to help him get back home.

This story wasnt very medical other than the cancer stuff at the begining but I really enjoyed it & wanted to make the list longer😂

Looking at the stars:I loved this because Lewis really captured what its likr to have a illness no matter how big or small that may be but in a positive way making you be able to laugh as well as cry.

Life Ramble

Lately I have been reallly getting into peoples life stories mostly celebrites or people I find intresting or inspiring.

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.

Netflix original Alexa & Katie

I said I'd never do reviews again after my massive 3 series Hetty Feather review but this show really stood out to me. Alexa & Katie follows a girl who has recently got a cancer diagnosis & her best friend. It starts with the main character Alexa getting ready for her first day of high school after spending summer in the hospital receiving chemo & other cancer treatments.

I look out for medical shows that I know I will be able to relate to,even though I don't have cancer I did feel like I could relate to this in alot of ways what I also really loved was that it showed alot of sides of stuff that I didn't think I was going to see. You get to see Alexa's emotions but also the emotions of her best friend Katie as well as Alexa & Katie's familys.

I also felt that it was really important to be able to be able to cry one minute then laugh the next.  This show shows how important it is to have one really close friend or a close group of friends & that you don't need tons of friends to be there for you. Katie's protection & love for Alexa was definitely something that I feel needs to be shown on screen more often all the things Katie does for Alexa are so sweet (EG:Shaving her head,Trying to get on the basketball team,auditioning for the play ect..)

Its easy to forget about  your friends when they become sick alot of people forgot about me & contine to do so.I know that they probably never think of me now or if they do i am probably  just labbled the sick girl.       

There's so many shows where you see the parents or siblings within them but you never get to know what they are thinking all feeling,I think its important especially in shows aimed at teens to also see adult relationships as well as teenage ones. I also think that its important that younger children's views are also put across. Kids have a innocence that often gets lost when they become teenagers or start to go into adulthood.

Getting back to the actual illness Alexa,Katie & the hospital kids took it upon themselves to have fun whilst in the hospital again something really important as this shows how you can have fun despite being ill & having all their problems it also showed the hospital support group which again I wasn't expecting to see but it was done so well & felt realistic.

I felt the school scenes were unrealistic but then I realised that I had based that on my own school experience,I don't know what happens in other schools I know alot of people I have spoken to have had bad school expirences but is that because people understand so little about ME & alot more about cancer? Or are there understanding schools out there? It made me realize that not everyone in the school profession can be as nasty as they are in my head or want to see you fail as much as I felt my school wanted me to fail,seeing this has given more faith in people.

On the subject of school we come to Dillion I also thought this was way to unrealistic again I based this solely on my own experience not others its not secret that I love to hard & always seem to love the wrong people. Dillon tutors Elexa for about 6 months ish before asking her to the dance she says no even though she wants to go because she thinks he is only doing it because he feels sorry for her. This is something I feel alot of the time not just with guys but with family & friends or anyone who says they care I think it's just a act.

Dillon does want to go out with Alexa & they end up planning to go to the dance together then there's a flu outbreak at the school so Alexa can't go but Katie goes to the hospital gets antiviral masks & makes everyone wear one to the dance witch they all do. Again this shows how much power people have if they all come together & how much even the smallest thing can make the biggest difference to someones life.

I can't imagine anyone at my school doing anything like that or anything at all really but I know alot of people would. Dillion & Alexa was great you can't make a teen shoe without having love stories within it but again somehow this show managed to give me back my faith in the world by showing me that illness isn't the end of the world, that you can be loved just like anyone else & normal things can happen to you despite all the things that don't happen in your peers lives.

Alexa wants to do things without cancer being able to ruin her fun but realises how to have fun even though she is sick. I cried multiple times at this show but I also laughed & reflected on my own life an awful lot I know season two is being filmed right now but I'm not sure how they can top season one but I do know I'm already looking forward to it