Note to younger self

I wrote this for a book that a website is making but I decided that as I'm not sure when the book will come out or if I will even be in it I might as well upload it here as well the aim of the piece was to write about what you wanted your younger self to know,I had a few people read this before sending it off and I'm quite happy with the outcome. As I've already written about I'm 5 years ahead of the average age to get ME so mine is probably going to be a lot different from most other peoples. I really enjoyed writing this and I would also like to make a similar thing but for my future self anyway... here it is:

First things first I want you to know that you & only you have the power to save yourself without the help of others I also know that even though people don’t understand that doesn’t mean no one ever will, you are worthy of love so stop letting people make you think you are not. You have the ability to get through this and there will be light at the end of the tunnel,
You don’t need what you think you need to be okay, I know you feel like you have lost everything but there’s no use  clinging onto what isn't real, You’ll be okay on your own & for a start your not on your own because there’s so many people who care about you.
I know alot of people don't understand or even try to understand what is going on but there’s nothing you can do to make them get it or to make them want to listen to you & I know you will lose alot of friends but you will also make better friends with more intresting,kinder people than the ones you already know.


You are going to feel like you have been rejected alot & like you are a outcast but I want you to know that its there loss not yours, I know you are going to feel unwanted but again that's everyone else’s loss not yours.
I also want you to know that illness doesn’t have to define you even though you might feel like it is.
It doesn’t have to be all bad. You don't have to let it break you, if you let it, it will make you a better person also when you start to feel bad because you can't help everyone remember you can always help someone & never lose sight of what you want or who you are because at the end of the day that's the most important thing.

What's next?

I've been starting to feel alot better lately but it struck me that I've been ill for so long that I didn't know who I was anymore,I slept for pretty much 2 years & that's no exaggeration then I started getting better a bit but I still couldn't so much. Lately I've been up at night because my brain is to active to sleep I never thought that would be happening again. I've been reading an awful lot at night to make myself tired enough to sleep which does work but for someone who's been so exhausted its hard to understand.

I started thinking about who I was who I used to want to be & tried to figure out who I wanted to be now. Its sad but I pretty much pressumed I'd feel as ill as before forever so there wasn't much point in planning anything also everytime I've planned in the past has gone wrong so  whole idea of planning anything was something I tried to think little about.

Its hard to think anything is ever going to happen when you can hardly get out of bed but  I was getting bored with doing the same things over & over so I started thinking about what I used to do.

I never thought I'd have to do that again either when I was younger I wrote alot of fanfictions again something I tried to put to the back of my mind I found my old whattpadd along with a fanfic from 2015 that was never complete so I decided to change it up & see if I could make something out of it.

People have been so nice about it even reading my old stuff & commenting on that as well the story isn't all there & pretty basic but the fact people are enjoying it means everything. After not being able to read & write for so many years writing scared me for such a long time. I started blog writing,that I plan to continue but Fanfiction is when I'm really in what I feel is my element it gives me more joy that most things do.

My biggest passions are T.V/Film,writing,reading & spreading awareness (for many things but mostly ME)

My sort of plan I dont want to make a definite one because I never know what my health will do.  I dont think my health will get any worse but I do know that I still can't do much so I need to be careful with what I do & don't do. 

Right now I want to keep reading & writing a much as possible, I also want to  work on my grammar & spelling because Its quite bad after not having wrote for years. 

I'd also like to find some sort of volunteer work to do at some point if I feel like this would help me mentally because I'd feel like I was doing something for someone & that would lift my spirits up      

I also want to take a performing arts course or something similar at some point I've done a few online film courses bit its not the same as doing it with a group of people doing exactly the same as you.

I think if I'm ever able to work I would have to do a part time job somewhere as I don't think I will ever be able to work full time. I'm hoping to find a part time job in something I enjoy rather than something I don't I'm not exactly sure what I would want to do but there's plenty on time to figure that out.

I don't know what's going to happen to me but I do have some sort of idea of what I want out of life raising awareness for ME is one of my top priorities so hopefully I'll find a way to do that some how & I hope that whatever happens the person I was when I got ill would understand why things don't happen the way you want them to. I don't expect alot of myself & I don't think anyone else really does but if I can make myself proud to me that is all that counts

Goodbye Once upon a time

Effects of ME

In my last blog I wrote about ME & how I wish people would try to understand it better. To understand you must be educated so I’ve decided to make a list of my ME symptoms & some of the feelings I have experienced during this journey. In hope to educate anyone who might read this. but I would like to point out everyone is different & these are just the symptoms & feelings I have experienced or still do

♡Light & noise sensitivity: This is pretty self explanatory, I'm talking about any light or noise especially very bright lights & really loud noises. Neither one is as bad now but in order to cope with this I do sometimes have to use ear defenders, look away or close my eyes to avoid discomfort. This also means I can't go to concerts or anything of the sort like most people my age do.

♡To much noise: On the subject of noise I'm also not very good with more than one noise at once so people talking whilst the TV is on really bugs me or any multiple noises at a time really stress me out

♡Pain: the online definition of chronic pain is any pain that last longer than 3 months that can become progressively worse & occur daily.

I'm in constant pain 24/7 some days are worse than others,somtimes I can be up all night with it & its still as bad during the day, I do things on a pain level that most people wouldn't dare get out of bed on but I cant lie in bed all day feeling sorry for myself, I have to make myself do things or I'll feel worse
Its also not just one pain at once but lots of pains all feeling different in completely different parts of my body
There isn't a definite cure for pain, pain killers work short term but I’ve also found that Heat & Ice work really well for me as well as various holistic treatments & oxygen therapy that I have once a week.


♡Fatigue: Again for me this isn't just tiredness its pure exhaustion I can spend hours or days asleep but I don't wake up feeling refreshed I wake up feeling worse than I did before. its also makes you completely weary & out of it as if you have a hangover.

♡Friendships & Loneliness: Not being able to get out & seeing the same people day in day out makes you feel really trapped people also stop inviting you to stuff because you always cancel.

Its not my fault I always cancel on people, I'd like them to still invite me so I feel thought of. I get very lonely sometimes no one really gets how isolating illness can be.
So many friends forget about you & move on it makes no sense to me because I'm constantly making sure everyone is okay so I never understand why it does not also work the other way.

♡School/Education: Ive spoken about this alot but T.K were absolutely dreadful with they way they delt with me. they just gave up & its clearly had a massive effect on me because I'm constantly blogging & talking about it. I also have school related dreams alot so that’s obviously connected.

One of the biggest things I feel towards my education is that everyone no matter what ability or illness deserves to be educated & not given up on & also that not having completed my education makes me less worthy than others even though it really doesn’t. I also feel stupid because of this alot of the time, it also means that if I do ever want to do higher education I will have to do my GCSES older than 16 which is kinda weird to think about doing at a older age than normal.

I also know alot of people have had similar experiences with school so its always something to be wary of

♡Migraines: Migraines usually start in one part of your head then spread its as if there is a tiny person is inside your head setting it on fire.

♡Boredom: I have always got really bored even when I was well, Ive never been able to focus on one thing. I have to have multiple things going so having nothing going on really gets to me. I can't sit & watch TV all day it just irritates me after a while.
my need to learn has meant I’ve spent most of the time at home on the sofa watching shows on the law or fines do I now know alot of information that I don't really need to.

I also went through a faze of making alot of stuff up to entertain myself but you need to be really careful not to get to carried away & I did so that caused me many more problems.


♡Seeing others do stuff I cant: This is a massive one, in a way it comes into friendships but seeing other people be out having fun & living life sometimes really upsets me because I know I can't do any if the things they are doing. its really hard to watch people live life when you are stuck in one place in horrendous amounts of pain with nothing ever changing.

As I come to the end of my gigantic list

Another really obvious thing that needs to be mentioned is being allowed to sleep & not get woken it sounds so obvious but if I get woken up whilst fast asleep there is little chance I will fall back to sleep because the pain will probably kick in & make everything so much worse for me to handle. Then there’s little to no chance of me sleeping at all.

I hope this is helpful to people, I know there’s other things people face but these are just the ones I have had the most difficulty with.

My ME diaagnosis and how I feel about the world surrounding it

When I got diagnosed with Chronic fatiuge syndrome it was explained to me what it was & a plan was put in place to try to get my better in all fairness to the consulatnt he was amazing. He even showed me a picture of my brain compared to someone without MEs brain which was really intresting & Iv'e also shown members of my family that picture in conversasions about my condition.

It's not easy living in pain & being exausted all the time I hate resting its my worst nightmare in my opinion it is the devil in discuise.

The doctors put me of a rehabilitation proggramme for the ME, I started doing really well at the start the dr said because of my will to get better I had been able to get better faster than most people he's ever seen. But then winter came knocking me back,Iv'e now completed this rehabilitation programme so many times,Iv'e sucseesed so many times but fallen back so many times.


It gets very frustrating because I try so hard to get better but only ever seem to go backwards I can read & write now & spend alot of time doing that when I can but I feel like there's so much surrounding ME that noone talks about like the lonlieness of being trapped between four walls every day for months or even years on end.

Not getting out in the fresh air is never good, you need fresh clean air as much as possible but that is impossible if you can hardly move & can't even go for a drive around in the car because your to tierd to move.


I have really struggled with bordom a awful lot I have fandoms but they've also worked the oposite way & made me feel worse because I got to attached & that isn't ever a good thing either.

As much as this helped its also caused me so many extra problems I think what is needed in diagnosis or when a dr takes over your care is ways you can distract yourself or things you can do that don't involve much effort so they are possible to do on the most awful days.

They don't give you any of this even if you enjoy T.V & films alot your gonna get bored of them theres only so much stuff you can watch its also not good for you to look at a screen foe to long.

What also bugs me is the amount of competitions on daytime T.V theres alot of competitions on T.V but daytime TV id by far the worst its not just that but also the bingo adverts. I'm pretty sure if I was any older & had this condition I could quite easily get into all thesse gambling or bingo sites as I'm really bored all the time & want some excitment just like anyone else.


I also feel if you have just become ill & maybe had to give up work,live alone & are stuck in alone all day with hardly any income it would appeal to you quite alot. This could lead to addiction then maybe even eventally get so badly addicted you end up in  rehab having to get help, you could losse your home or get into serious debt, on top of all your other problems.

What annoys me most about this & I suposse its the same for any illness but these adverts & competitions are aimed at people who at at home bored & have little income there getting you hooked because they want money they don't care about you at all.

I think people should be given links or information on support groups instead of having to find them for themselves, groups should be set up for people to meet others going through the same thing this way people would feel less isolated & alone beacuse its easy to feel like you are. Everyone needs social interaction but its hard when you feel noone undertands you or your situation. If youre around people who are going through the same this isn't a issue.


I also belive that overall people need to be more understanding, what my school did to me in any circumstances isnt okay & Ive spokenn to alot of people whos schools have done similar things which again isn't okay I would love to somehow work within schools or with them to somehow help them understand ME or to somehow work with them because noone should be treated the way I was all they need is a little more understanding or to be taught how to handle it.

I don't belive I can change the world but I do belive the world needs to change people need to become aware of cetain things that impact others even ones withot illnesss & I'd like to think that in the future people will be more understanding & stop seeing people as numbers,stats or just another patiet people need to look deeper into peoples lives than they do.

You never know what people are going through & it takes hardly any time at all to try & think about how to hwlp make someones life easier,its mostly people in power who won't see people as atual people like the goverment schools or hospitals alot needs to change but I somehow hope it can.

How I feel about beating the avreage age to get ME by 6 years

Quote from a article I read about ME the other day said   "What cannot be agreed, however, is what type of treatment is appropriate for this debilitating illness, which usually develops when people are in their early 20s to mid-40s."  I'm six years under the normal age range to get ME Firstly nothing they use to treat ME really works it only partly works then you get but
I’m not sure how I feel about beating the average age by 6 years, in way the older you are the more you have to lose but atleast you have a education or most of one I suppose if you do then you get to ill to use it you are gonna feel like it was all pointless

I thought writing about this might help me out because I don't know how to feel  or how I should feel.

I have spent all my teenage years asleep the years that are supossed to be the best years of your life,they really havent been watching everyone out partying hanging out,learning to drive or just getting on with life when you can hardly move is something you never think you will have to experience especially at a young age.

At least if you are older you have a full education, I've got noone of that apart from primary school years and half the time I wasn’t there. But what's worse being older & having a job kids & a husband then one day waking up not being able to do anything or going from thinking about all that to watching other people grow up around you? I think about what I have alot & what I want I wanted at 14 before diagnosis I’ve come to the conclusion I probably way to much.

Everything I want goes wrong somehow especially since after turning 14. One of my favourite quotes is "the Devil does not come to you as a red man with a pitch fork but disguised as everything you’ve ever wanted" I'm not sure that’s the exact quote bit its something along those lines I'm pretty sure this is true but my problem is that I plan to much I get excited way to easily & most of the time its not a good thing because I get really upset when things don't happen.

I want to study or work more than anything I always have a I think maybe that's where I went wrong wanting to much knowledge if that is even possible.

There’s so much I can't do that others my age or people younger than me can & that bugs me a great deal. I suppose if you do have a job & then get sick you would lose your work friends  like I lost most of my school friends & I suppose if you can't get out you lose all your friends anyway but are adults more understanding than teens? wouldn't that depend on the person? I suppose if you have no experience of illness you won't understand.

its always the people around you when it comes down to it however ill you are if you get ill you find out who your real friends. I don't have alot of friends bit I know who will be there when I need them people leave but you have to remember that its them missing out you & you aren’t to blame.

In a way its kinda good I’ve skipped the getting hungover from partying stage of my life although I don’t think I would have done that even if I was well the worlds a cruel place & I’ve learnt that the hard way illness has changed me.

in summary I have no idea what is worse
but maybe all the things I’ve missed out on can happen when I'm older no one is really expecting much of me so its not as if I'll let anyone down & I’ve already decided that when I am better I'm taking a year or 2 out to just go & do whatever I want because if I'm going to study or do anything it needs to be something I enjoy or something I'm really passionate about  to make up for lost time.

I'm just really hoping at some point I will be able to do some of the things I really want to do even if they have to be changed a bit to suit my needs.