Do people really get it?

I have to wonder if people really understand what its like to have ME. I get that its not easy, I do but is it really that hard to understand?

When I sit and really think about it, it probably is that hard to understand. People can look at me and forget that i'm ill. Well at least for a few hours. After that the fatigue and whatever other symptoms I have that day kick in with a vengeance, my dark under eye circles start to show through my concealer and I start zoning in and out of conversations. Thats when they remember.
But even then, only my parents really see what happens after that. Like going out to lunch for a few hours... then coming home and falling asleep because theres no energy left to keep my body awake and functioning. Or the days when I barely say more than a few sentences to them because my brain isn't working and I cant hold a conversation, or because I simply don't have the energy to spare.

 Your brain uses 20% of you energy a day to just work, for you normal people that doesn't really matter as you have another 80% for any and everything els your body needs to do. Recent tests I have done have shown that my body runs on 34%. Think about that for a second. 20% of that goes to my brain, leaving only 14% for my body, for everything els. For walking up and down the stairs, for having to stand up in the shower and wash my hair, for every internal biological process needed to keep you alive.

Can you understand now why we cant do all the things you can do? Like if I shower and wash my hair, I cant leave the house the same day without overdoing it. Or that leaving the house two days in a row is a BIG thing! Why I haven't learnt to drive yet, or had to stop my education.

Being chronically ill is hard. Most of the time it sucks.

BUT... Being ill has given me a different perspective on the world. Its made me more positive and it has made me a thousand times stronger because of everything i have been through .

Yes, I may have days were I cant move because of the pain or cant see the people I love because of the fatigue. BUT there are people worse off than me. I have a beautiful home, an incredible family and my friends are some of the loveliest and supportive people on the planet (online spoonie friends included!).

Being chronically ill has taught me that the world is a beautiful place, filled with incredible wonders and amazing people.

So, please do not judge a book by its cover, human beings are more than what you see.

Love to all

- Jess

ME-Awareness week

This week ( 11th - 17th) has been ME- awareness week.

And i just want to say how proud i am of all my spoonie sibling for all that they have done this week. A but load of money has been raised and a huge amount of awareness!

I'm not going to say anything about ME on this post because i don't feel that i need to. So many of the wonderful women who i look up to have done blog post on ME this week and honestly i don't think i could come close to the great work they have done so all i am going to do is link in their blog posts ( and Instagram accounts) for you to take a look at if you want to know a bit more about the invisible Illness me and many others suffer from.

1. Hayley-Eszti Szucs (IG: @hayley_eszti )

2. Meg says (IG: @megsays_ )

3. Lennae Stubbs (IG: @lennaesworld )

4. Christine Miserandino (IG: @butyoudontlooksick )

5. Anna Jones (IG: @indy_annaj )

I just want to point out that this is just a handful of the blog post that have been done by some incredibly inspiring people.

I really hope you take to time to read at least one.

Love

- Jess

I'm Back!

Hi Lovely people

 I know it has been a while since i have blogged and for that i am sorry. A lot has been happening in my life and that has sucked up all my energy leaving none for blogging.

For a month or two after my last post everything was fine health wise, i was just completely swamped with A-levels and had no energy left over :(

And then a few weeks before Easter i went down like a tone of bricks. and unfortunately i haven't really improved since then. I have had to make the difficult decision (again :( ) to not do my exams this year as i don't think i could even sit in the room for two hours let lone actually do the exam.

And because of this i have decided to take a break from my education for a while and focus on my health and happiness.

Another thing that has happened is i have gotten some new info on my health!
a few months ago i had some blood tests done to test the mitochondria in my cells. ( this is the part of your cells that makes the energy for your entire body) and we got some interesting results back. I believe my response was
 " My body is F****d up"

Because of this i have had to change my diet dramatically (for a start) and that has meant a lot of readjustment. I haven't had chocolate in months!

I plan on doing a more detailed post on my diet soon, as otherwise this would be an incredibly long post.

But getting back to the point, i now have a lot more time on my hands that isn't being taken up by school work so hopefully that will mean a will be blogging more regularly.

Lots of love

- Jess

Rant Time

I have recently found two articles from the Guardian and the Daily Telegraph about ME/CFS and they have made me extremely upset and angry.

Link to Article 

"People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King's College has found."

Link to Article 

I just have to say, Why are they wasting time on studies like this when they could use that money to do research into the cause of this debilitating illness and therefore hopefully find a way to help all of us, maybe even a cure.

"Prof Trudie Chalder, from Kings College London, who led the study, said: “By identifying the mechanisms whereby some patients benefit from treatment, we hope that this will allow treatments to be developed, improved, or optimised."

"Not understanding the exact genesis of a disease did not preclude treating its symptoms, she added."

As I was reading the comments left on the guardians article I found this:

"Trudie Chalder is a professor in the Department of Psychological Medicine, King's College Hospital. She is a psychiatrist."

All I have to say about this is that a Psychiatrist will only look at at an illness in a psychological way as thats what they have been trained to do. ME/CFS is a physical illness so why is a psychiatrist doing studies on it?

Lastly I want to say that as of 2010 ME has been classed as a disability and I am deeply saddened by the lack of credit us sufferers get for dealing with all that we do every day.

So all you ME/CFS sufferers listen up!

You are Fierce. 

You are a survivor. 

You're a Fighter through and through.

 Little Brave , Breathe. 

There is a Warrior within you.

Love to you all 

- Jess

Happy New Year - Plans and Goals for 2015

So its 2015! Oh My Makeup the last year has gone fast.

so its that time of year when people reflect over what they have and haven't done and create their new year resolutions. 

I for one don't think I have had any new year resolutions, ever. Well not that I can remember (#sickchickproblems).

And this year won't be any different. Setting goals is a good thing it keeps you motivated, but my fellow spoonies will know that setting goals with time limits isn't always the best idea.

So this year I'm going to set myself some (hopefully) achievable goals with no significant time limit.

I have to admit I haven't been very consistent with my blogging since I started, and its really starting to get to me. I started this blog so I would have something that was mine, somewhere to talk about the weird stuff running around in my head, somewhere that I could share my experiences and opinions. So this year I am going to do just that, I'm not quite sure how often I will blog, I haven't got that far yet. But I will be doing a beauty product review soon (just waiting for it to be delivered!) and I plan on doing a book review as well so stay tuned!

Another is to improve my diet.

 I'm not unhealthy but lately I have been eating more and more junk and I am feeling bloated and very unhealthy and half of my jeans don't fit and that just makes me sad. So that needs to change. So fruit and veggies for me.

I hope all of you have had a fantastic Christmas and have a wonderful new year. 

Have any of you got any goals/resolutions for the new year? Or any nice plans you're looking forward to? please comment and share xxx

i think this should be one of every ones 

stay lovely 

- Jess 

A Good Day

I have been eyeing up the new seasonal drinks in Costa for a couple of week now and i finally had 

one!

Me and my mum had a few Christmas presents to get and I really needed to get out of the house so we went into town. When we got home i started thinking about the day and realised that everything went according to plan and i was really excited! so i thought i would share my day with you.

Starting with the boring stuff, i got up, lead in bed for 30 Min's telling myself i needed to get up because i was hungry and lying there wasn't going to get my stomach to stop rumbling. So had some food and then did some biology revision, fun! I am currently doing biology posters for revision and i managed to finish one, yay!  then had a shower, washed (it was very necessary) and dried my hair. with a 20 minute rest in between the washing and drying, to give my arms a chance to recover.  I then had some lunch, jacket potato with spaghetti hoops :)  somewhere in there i changed into actual clothes (not pyjamas or a towel).

Now the fun stuff, mum came home from work and we went shopping! only went in about 3 shops but it was fun, we had a good chat about unimportant stuff and got everything we needed (Christmas shopping complete!). we stopped off in Costa and both had one of their orange hot chocolates! Oh My Makeup it was good! and ye i did just change OMG to OMM, i think my version is better (and awesome)  and that's how it tasted ommmm, it was just like a terry's chocolate orange!

hope you had a good Monday 

- Jess 

So... Whats next?

This week, people start going back to school. From next week they start going to/back to university.

So...what's next for me?

Well, this past summer I was ment to take my year 13 exams and then next week I would have been off to university. 

That didn't happen. I was extremely ill for the month leading up to and during the exam period, so I was unable to take them :(

So as of this week I will be starting year 13 again. At home. I spent last year learning the material needed to pass my exams, but just because I understood it, didn't mean I could remember it! (Bad short term memory, curtesy of ME). So this year will consist of me doing everything I can to get all of that important info needed to stay in my brain. I am doing two A-levels, Biology and psychology. I will have to write an essay at the end of one biology exam and at least one in each psychology exam! Why did English have to be my worst subject! 

Anyway, that's what Is about to happen to me, what's about to happen to you? 

- Jess

My Week In Pictures #1

Had a great week this week. Went down to my Nan and Grandad's again from Sunday to Thursday and had a lush time. 

 Trying out Special K Cranberry and Almond Granola. Had it with fat free yogurt and strawberries.

Yummy.

 OMG. Hot Chocolate!!!

Beach time Baby. 

This is my feet ;)

Did too much. Didn't get out of bed until 1pm.

Three hour car journey back home. 

Doctor Who!

- Jess

The Seaside

There’s something about the seaside that makes me feel better.

 

I don’t know if it’s the food, the smell of salt in the air, the hypnotic repetition of the waves crashing against the rocks or being able to burying your feet in the sand.

My grandparents live in Cornwall and whenever we visit we spend almost the entire time by the sea.

We go to lands end and do one of the coastal walks along the cliffs so that we can look over the edge and see nothing but the ocean.  We eat pasties and freshly made donuts. Yum.

And I have to say, walking as exercise is one of the easiest to do, you can walk anywhere and everywhere. No equipment is needed. You don’t have to spend hours in a gym trying to get just one step closer to looking as fit as the people you are surrounded by.

But walking with views like this!

It is just incredible. It makes you smile and all of your worries just fall away.

I would recommend going to the seaside. Even if it is cold and windy. curl up in a blanket with a flask of tea and just watch the tide go in and out.

- Jess

P.s. i leave you with another poem (well part of a poem)

Out of the huts of history’s shame

I rise

Up from a past that’s rooted in pain

I rise

I’m a black ocean, leaping and wide, welling and swelling I bear in the tide. Leaving behind nights of terror and fear

I rise

Into a daybreak that’s wondrously clear

I rise

- Still I rise | Maya Angelou