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.