Saturday, 29 December 2012

A worldwide bond

Something I have learnt since being ill is that people from around the world, from other countries, aren't all that different to me and to British people.

Reading blogs and tweets, they could be written by anyone, from anywhere in the world. And it's strange how I have come to feel closer and more in-tune with people who live halfway around the works, than people from my town.

I never really thought that other countries, such as America and Australia were all that different. But I guess, now I know that we are all really the same. We have different traditions, different slang, different weather and things like that.

But when it comes down to it, those aren't the important things. The things that are most important are that we all want to be happy, we all get upset, scared and angry by the sane things.

A lot of people that I talk to, and who I consider my friends, from around the world, have the same DVDs as me, same nail varnishes and things like that. And I think it's just so fascinating that we talk about that DVD, or nail varnish, compare opinions, without even having to be in the same room, or country.

All of the people I talk to on twitter, know how I feel, because they are sick with ME, fibro, CFS, CFIDS, lupus or EDS too. Some might live thousands of miles away but there are still things that connect us together.

I never thought that I'd feel so close, or have so much in common to someone who lives in another country, who I have never met, and who is 10 or 20 years older than me, but I do.

The initial bond that we have, is the ME, but afterwards, I have found that we have other things in common too. We watch the same Youtubers, we are interested in fashion/beauty, like the same music, watch the same TV shows.

That is something I have learnt in 2012.

P.S. Hope you all had a fab Christmas
Saturday, 15 December 2012

There's nothing beautiful about being sick

There's nothing beautiful about being ill.

About pills. Doctors. Hospitals. Scans. Test. Constant pain and feeling ill.

So, why, when people think of a teenager or child being seriously ill, do they imagine bald heads, brave smiles, swimming with dolphins and trips to Disneyland.

Not wanting to sound bitter or selfish but an image has been built up, so that everyone thinks that it's like that. When in fact it's not. I'm not. And I feel like a failure for not living up to the expectations of the sick teen.

In magazines, you read about these kids who are brave, inspirational and who stay positive and smiling through out everything but I'm just not that. I cry. I moan that it's not fair. I'm not brave. I hate hospitals. I get really scared. I'm not strong. I haven't met any celebs. I get grumpy. I don't have cancer. I haven't done anything amazing or spectacular. I haven't been on a holiday around the world, I'm not dying. I'm not positive. I give up, all the time. I don't look ill. I'm not skinny. I haven't been inspiring to anyone.

There is nothing beautiful about me, or this illness(es) that I have.

I will never be a poster girl for young people with illnesses.
Wednesday, 5 December 2012

Experiencing new symptoms: just some of the new symptoms I have been experiencing recently

Experiencing new symptoms

My eyes hurt. I get an 'onion sensation'. You know when you are cutting up onions and your eyes feel stingy and watery and sore, mine have started to do that randomly, whenever they feel like it. It doesn't happen when I'm watching TV or anything like that, and I can't seen to find a pattern to it.

Brain fog has been pretty bad and I have struggled to read recently so have given up for the time being. I can't concentrate or understand anything.

When people talk to me, it takes me a while to figure out a.) if they are speaking English b.) what they are saying c.) what those words mean and d.) what I am supposed to say back to them. Now, it isn't always this hard to understand what people are saying, now, don't get me wrong, usually I am okay but recently this has been happening more and more often. Words just sound like noises and I'm not sure what each noise is meant to mean.!?

Clothes hurt. Pajama trousers, vest tops, plain cotton long sleeve tops; they hurt. My skin is so sore and every inch of me feels bruised. Loose clothing hurts and it's so bloomin' annoying!

Cold sensation in my head. The blood in my head sometimes feels ice cold and I can feel it moving around and going down into my neck. Now, I'm aware I sound really crazy but that is truly a sensation that I get!

If anyone has experienced any of these symptoms and has found something that helps, please let me know!
Saturday, 1 December 2012

Maybe, just maybe, this time, things will be okay. How long does it take for a spoonie to realise they are chronically ill??

How long exactly, does it take to recognize and realise that you are sick? And I mean truly, life-altering sick, not just getting a cold every now and again?

To be honest with you, I'm not sure a lot of people EVER realise. I know some ladies who have been sick for 30-40 years and they still struggle to understand the consequences of being a spoonie.

Somehow I keep thinking that tomorrow I will wake up and be well again.

Sometimes I think, my brain tricks itself into convincing me that I will be fine after a big event or outing. For instance, I blogged back in August (post titled 'Christmas in August') about last Christmas, when I convinced myself that because it was Christmas, I'd be fine. I'm trying not to do the same this year but I do find it hard to strike the right balance between thinking positive and being completely unrealistic and having that head of mine, stuck in the clouds!

I know that I am going to get payback after Christmas. I know I am going to feel ill. But a lot of people I know, think that I am being negative by saying that, even though it is the truth!

Sometimes, I know I am going to get sick after an event but its all so vague and abstract until the time comes when I am stuck in bed. Somehow, I keep convincing myself and thinking, in the dark recesses of my mind, that surely I exaggerate my illness (I have been told by people that I do and part of me wonders if they are right) and that this time, maybe, just maybe things will be okay.

They never are, but a girl can dream, right?

Note: sorry for such a rambly post. I just wrote what was in my head!
Thursday, 29 November 2012

Baby guinea pigs!

The baby pigs!
Hope you can see them as it's not a very good picture but the baby pigs arrived at about 5pm last night and they are so super tiny!

Thursday, 22 November 2012

Is there light at the end of the tunnel??

I don't know about you, but before I got sick with ME, I didn't get ill very often.

Yes, I got the occasional cold and stomach bug in the winter but other than that, I was usually fine!

However, when I did get ill, the one thing that got me through, was the fact that in a couple of days I would be fine!

Kids heal quickly and although I was probably feeling pretty rough at the time, the thought that in 24 hours, my "24 hour vomiting bug" would practically be gone, was enough to get me through and keep me sane.

But when you are a spoonie, you don't know when or even IF you are going to get better. Sometimes it feels as if there is no light at the end of the tunnel. And even if there is a light, it may be very dim at the moment and could take years and years to reach.

Not knowing when or if you are going to get better is really hard. Maybe if we all knew how long this was going to last or when they would find a cure, maybe then it would give us something to look forward to or work towards. But in the mean time, we all have this imaginary light. Well, I do, anyway.

I am ploughing through the tunnel, not knowing how long or short it is. We have to work towards the light, towards getting better even though it may not happen.

It's hard to be optimistic all of the time, especially since you can get dragged backwards through the tunnel but to all you spoonies reading this, I promise you will get there.

That is a slightly hypercritical thing for me to say because most of the time, I feel as though the tunnel is never ending. It's very hard not to give up.

But I guess we all just have to try.
Monday, 22 October 2012

I need a day off. Please?

I got a diagnosed about a year ago. It was the last week of October 2011. (I cant remember the exact date!) I cannot believe it has been a year and that I have been ill even longer.

Feeling this ill for a whole year. Every single minute of every single day.

I can tell you, that right now, I just want a day off. I am feeling extremely annoyed and restless. Why can't us spoonies have a day off every now and again?

Please.

Pretty please.

I need a day off.

I just want one day where I don't feel like I have the flu. I just want one pain-free day.

Please.

I hate feeling dizzy, I hate the nausea. I hate the headaches, the pain, the weakness, the tiredness, the exhaustion, the tachycardia, the sensitivity to light, sounds and smells.

I hate that it just won't stop or go away.

Okay, even just having exhaustion and pain. That would be like a day off. I'd be okay with that. But, please. I just need a holiday. I want to feel well for Christmas.

I NEED to be well for Christmas.

I cant cope with feeling this ill. I cannot even describe to you how rubbish i feel.

School children have days off. The have weekends and holidays. People get time off from work so why cant someone make us better just for one day?

Why won't it stop?

Why won't it go away?

I want to be a normal teenager and I want to feel well, just for one day.
Wednesday, 19 September 2012

ME is kicking my butt right now

I feel so unbelievably ill.

I shouldn't even write because I'll probably depress you all but..

I had THE WORST nights sleep ever last night.

I felt so poorly.

Now I feel awful and I have so much that I need to do.

I want to sit in the garden for a bit to get some fresh air (maybe it will make me feel better?) but my legs are too weak to carry me there.

I need to have a shower and wash my hair but I don't feel well enough.

I feel like death warmed up. Except I'm freezing cold!

Everything hurts.

I have no energy.

Am praying that I sleep better tonight
Saturday, 15 September 2012

Invisible illness week 2012

Hey guys

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them. This year, National Invisible Illness week is taking place 10-16th of September (I know I'm a bit late!)

As you all know, I have ME. ME is an invisible illness. I get told all the time that I look healthy and well, when i feel absolutely horrid. Just because I don't look ill, it doesn't mean that I don't feel it.

I feel like I've got the flu all of the time. I feel sick, I get headaches, I ache, I am in pain, I'm exhausted, I feel like I'm gonna pass out, I feel dizzy. You cannot see any of these things. But that does not mean that they are not there.

If you know someone that has an invisible, chronic illness, please do not tell them that they are looking well. Don't assume that just because they have put a bit of make up on, and got dressed for the day that they are feeling fine.

We are in pain all of the time. We feel constantly exhausted.

It never goes away.

Please go to
http://invisibleillnessweek.com/
for more info

Sunday, 2 September 2012

Photo summery of Summer 2012


Hey guys, today I thought I'd show you some photo's as a sum up of my summer 2012. Hope you enjoy!



This is my sister's new guinea pig, Clover. We got her at the beginning of August!


This is Daisy, Clover's sister.

This is another of our new guinea pigs, Lightening. We got him a couple of weeks after the other two!

This is me, my dad, my brother, my sister and my best friend Lucy when we went to see the Olympic Torch Relay.



This is the snail i painted the other week when i went to an art's and crafts place to paint ceramic's. (picture taken before it has been glazed.. or whatever you call it!)

This is just a picture of moi....


This is me (messy hair!) and my baby cousin Cooper when he was 4 days old.

These are my nails that i wore for the Queen's Jubilee in June! Funky, eh?!


This is Thunder, another new baby guinea pig!

And... this is me, Lucy and my nan at my birthday party in June! Sorry that these arent in any particular order. I did do some other stuff that i didn't manage to take photo's of! A girl can't take her camera everywhere.... *sigh*


Saturday, 1 September 2012

Garden Centre Adventure

Hey guys

On Thursday I went out to a garden centre with my grandparents.

We walked pretty far (too far probably) and so the past couple of days, I've felt really poorly.

I so wish that I'd of taken my purse there because there was lots of lovely things to buy but I just didn't think! There were some really gorgeous fashion scarves, loads of different styles, prints and colours and I really wanted one! Also there were loads of candles, including a Yankee stand and lots of bath goodies like little hand-crafted bath bombs. There were bath bombs shaped like butterflies, like cupcakes, like flowers, there were sparkly ones and loads of different colours! Gorgeous!

There is also a craft shop which I could of spent ages in and lots of different bits and bobs like sweets, books, plants etc!

There was some stationary and a few 'back to school' bits that made me kinda sad because I used to love getting ready for a new school year. I used to love buying new stationary and sharpening my pencils ready, clearing out my pencil case and wearing new shoes in. It's sad that I have to talk about that in the past tense but maybe some day I'll go back to school...

Anyway,

We then drove round for a bit, had some lunch and went home.

I honestly don't think I have walked that far for at least 6 months, probably longer but I was standing up for ages too! I really should of taken my wheelchair, silly me!

Anyway, so I've spent today and yesterday pretty much doing nothing apart from resting. I've felt so ill and had bad payback but I guess that's to be expected and I did have a really good day so it was worth it!

Today my best friend Lucy is round and we were planning on going out someone but I'm not well enough so we're having a chilled day at home.

Hope you are all well. What have you been up to?
Tuesday, 28 August 2012

Pets

Hey guys

So many of us M.E. sufferers, especially those of us who are house bound, often face intense isolation.

Too much human contact can cause dramatic increases in our symptoms and we feel awful afterwards.

So many turn to, and rely on, pets for companionship and friendship.

They give us purpose, responsibility, a reason for getting up in the morning and a reason to look to the future! They make us smile and cheer us up! We can stroke them and cuddle them...

I am very lucky to have a cat, some fish, 7 guinea pigs and 2 rabbits (my mum and sister (also known as sexy Bexy!) look after most of them although I do feed my cat sometimes).

I know of many people with various severe illnesses who rely on their pets almost more than they rely on human contact.

For many M.E. sufferers, our pets play an important role in keeping us going and getting us through the days.

My cat (pictured below) isnt particularly friendly because she is shy and timid. She doesn't often sleep on my bed and prefers to sleep in unusual places such as in the middle of the landing or on a piece of paper! I do wish that she would snuggle up with me and keep me company a bit more often... (I would love loads of cats! They are my favourite!)

Some spoonies' cats have kept them company for so many thousands of hours that they would otherwise have spent completely alone. Being alone but having a cat or two for company is so much nicer than just being completely alone. I can see how it really makes a difference to them and lifts their mood!

I can see how having a cat purring and sleeping next to you, can help if all you can do is lay in bed or if you are in a lot of pain. It's relaxing and soothing.

M.E. makes you so isolated, because even a little bit of time spent in the company of another person and having simple conversation can be too much for very severe sufferers to cope with without relapse. Severe M.E. means spending almost all of your time with little human company or contact.

Luckily I am not a severe ME sufferer (at the moment) and I have been getting better.

When i cant sleep at night, i go downstairs to see my cat. I sit with her and talk to her (yes, i am a mad cat lady!), i play with her with a piece of string or a toy. My cat make me laugh out loud at least once a day and often a lot more. They are such funny little things and always up to something new!

She is so cute and funny when she gets up to mischief! She gets herself into a pickle quite often and she's always being naughty and eating things she shouldn't! Once she ate my brothers birthday cake, not the whole thing but she took a chunk out of it during the night! Even though it was wrapped up and secure, she got to it! She has also been known to eat a whole scone or slice of fruit cake when we are not watching!

I could go on and on with dozens of funny stories about her but I'll spare you that because I realise they may only be funny to me and my family! A lot of them are you-had-to-be-there moments.

Daily laughs for someone with M.E.are such a special thing, and so important. When we are feeling so lonely and ill and in so much pain, laughing can help us so much! With all the grim realities we face who needs to laugh more than us?!

However I do appreciate that for spoonies who are house bound, even having a quiet pet such as a cat or rabbit can be too much. And that they could not cope with their movement or noise.

Having a pet and not being well enough to see it much can also be terrible.

I think cats are probably the best choice because dogs can bark loudly sometimes and they need a lot of care and walks.

Dogs are difficult because they need walking -something impossible for most M.E. patients. Cats are easier than dogs and there are also birds and mice, rabbits and guinea pigs and rats to consider, depending on your own illness level and which animals you like and dislike. (Rats aren't for everyone and they certainly wouldn't be my first choice!)

A goldfish in a bowl could be good. You could have it by your bed or where you can see it easily. I'm not sure about tropical fish tanks as they can be noisy and have bright lights.

Pets have their downsides too.
My cat will sometimes decide to go outside so I'll get up and let her out. Then 30 seconds later (when I've just sat back down) she'll want to come In again. Then she'll want to go back out. In and out. In and out. Goodness knows how long this goes on sometimes! We don't have a cat flap you see! Thank goodness I don't live on my own and my mum can take turns letting her in and out!

Or she'll decide to meow, claw, scratch and howl at 3am at me until I get up. These sorts of things can be maddening and so annoying!

Also, i'd go for a short-haired cat because my cat is semi-long haired and there is also cat hair over EVERYTHING, all the time!

Obviously I get far more from my pets (mainly my cat cos I don't have to go out in the garden to see her!) than I lose of course, and mostly she is well behaved!

There are also financial costs too but I don't know much about them so I won't go into depth! I am aware that a lot of spoonies can't work and don't get that much money from DLA or other benefits so it's important not to get an animal that is too expensive.

Also, I hate the way people unintentionally look at me nowadays. They look at me with a combination of pity, unrealized judgement, and without looking at me as a person if that makes sense. They judge me on my clothes and greasy hair. I am a 15 year old girl, they expect me to have spent hours getting ready!

Pets don't see greasy hair or a person lying down. To have a pet who gives you uncomplicated love, love without knowing your life-- just knowing 'you', can be invaluable.

Because I'm ill, people that I don't see often, worry about what they are saying to me. They are careful not to talk about school and things like that incase it upsets me. And if I'm having a bad day, usually people are slightly kinder to me but I like that fact that my cat will ask me for food whenever she likes. She doesn't care how I feel and she doesn't treat me differently! She doesn't care what I'm wearing or whether I've showered!

Sometimes I feel that she is the only one who is there to give me support and love. The only one that doesnt judge or question me!

Pets can also be great confidants. Personally, I know I hide so much of the realities of having M.E from almost everyone that I know. Talking to a pet, having someone to actually be fully truthful with, even more honest than you may be with yourself, can be vitally important. Yes, I talk to my cat. A LOT.

Pets are fab. Their individual little personalities are so interesting too. It is great to have your pets from babies and watch their personalities grow and change over time!

Pets really are just great!

Sunday, 26 August 2012

Being a confident spoonie

Hey guys

Most human beings, at some point in their lives will struggle with their personal view of their self worth and their confidence. Whether it's after being bullied, during your teenage years, whenever.

These people have 'regular' lives, and 'regular' problems (I use the term 'regular' as I believe 'normal' is not the correct term at all and I mean, what IS normal? and can't think of how else to put it!).

So what about the people who are for whatever reason, unable to do the things these
people usually do to feel worthy?

What about the people that are too ill to see friends and have a boyfriend or girlfriend?

What about the people that don't have the energy to make themselves look nice, put on makeup and get dressed.

What about the people who are too ill to go visit a friend in need, or feel that they are unable to congratulate families achievements, or to hold down an ordinary job or go to school.

What about the people so ill, they can barely look after themselves, let alone others.

This battle is one most people with M.E. will face at some point during their illness.

Personally, I have struggled with confidence for my whole life, i think I'm too fat, my nose is too big, my eyes are too small, I'm not clever enough, whatever! Yet I hold double standards for others, who I entirely believe are just, worthy, valuable and beautiful exactly as they are. It's bad, I know.

No matter what you look like, what your abilities are or how limited they are, no matter what you think about yourself, I think that you are worthy and that you should be confident and happy with yourself. You should embrace who you are and be proud of yourself. That includes you. Yes! You! You are fabulous!

I hate that we live in a world where it takes courage/bravery/strength/guts to be you, to stay who you really are. Yet people with M.E. have so much added pressure on top.

I wish that 'healthy' people would try to understand a little bit when talking to someone that has had to give up work or study due to illness, and that this is extremely hard to deal with.

Many people would like a few more weeks or months (or even a year or two!) off from work or to work far less hours, I completely get that! But not being able to work at all for years at a time, not having the choice, is not something 'healthy' people should even joke about envying, as people sometimes do. It is just devastating and really lowers confidence. Grown women and men don't like to have to depend on others Financially, socially and emotionally. They want to fulfil dreams and be independent. They would give anything to be able to care and earn money for themselves.

People have many a time said to me 'You're so lucky, I wish I could just lay in bed and watch films all day instead of going to school' As you can imagine, hearing things like this from friends can feel so disheartening. Would they really want to spend days in bed doing nothing? They'd get bored and WANT to return to school.

It can feel so painful not being able to reach the 'normal' milestones in life, not going to school, doing exams, having a job, not getting a house, getting married and having children. So many of us, including myself, are unable to gain or achieve one of these. It makes us feel left out.

This might sound stupid but when I set up this blog, I was really happy. I was pleased with myself and felt like I had achieved something, even though I hadn't written any posts yet! I was proud of myself and felt like I had done something useful and productive in my day!

Some people might not think that it's a very big deal and self opinions are so super biased. It is amazing the different standards we hold for ourselves compared with those we hold of others.

So much of our self worth is in what we do. In our jobs, in our roles in life, in our hobbies, and even in the way we style our hair and the clothes we choose to wear and express ourselves with...and a million other things.

Having such little control over any level of things can feel so demeaning and plague your opinion of your self and self worth, and your life on whole.
There are so few decisions we get to make, so few choices we get to choose from. When you have so little control it is easy to feel small and insignificant.

Lots of people with ME have plans to go to uni and train as teachers or doctors. That is all they ever wanted to do in life, until they got sick with ME... So when you have spent so many years believing that you are here on this earth for one reason, when that is no longer possible, you wonder why you are here.

You inevitably question your purpose and value.But just because things become apparent that changes your who perspective does not mean that you aren't exactly who you are supposed to be. But when you are sad, upset and shocked, it's a battle to realise!!

When you get a disease like M.E. it not only takes away the big things like the ability to work or study, but it takes away so many of the medium and smaller things as well. It shakes not just your self worth but your very sense of self, to the core.

Being a teenage girl, with hormones all over the place doesn't help either!

Loads of people go through such a hard time dealing with not having a focus in their life and with feeling like they aren't pulling their weight somehow, because they aren't working or studying.

Some ME patients feel like they have nothing to aim for and to strive towards and look forward to. Work and study give such structure to our lives.

It took me ages to really understand (and I'm still trying to) that I truly had value even if I could not do almost anything, and that what you do is not the same as who you are. So I had to learn (and I'm still learning) who I really was as a person and what I really valued.

It can be a really valuable experience. It is a valuable lesson to learn, but, like anything worthwhile, it is never easy getting there.

I suppose all worthwhile emotional growth comes with pain, but when you are suddenly forced to do it all at once and without the distractions of work, study, or even much fun time spent with friends, it is incredibly intense and overwhelming, especially when you are feeling really really ill.

For anyone going through such a battle now, I would like to send them a big cyber (is that how you spell cyber?) hug from me, but also remind them that it does pass, and you do learn to adjust your sense of self over time.

Being severely ill is never fun and is always a heavy burden but you do work out ways of thinking and coping along the way, that you just have no idea about in the early stages.

It is a bit like a roller coaster, coping with your loss of self and your loss of self worth. Ah! Help!

You might have a big 'dip' (whoop) then be okay again for a bit, and this pattern just keeps repeating. New issues continually have to be dealt with, but hopefully the 'dips' get smaller as you go along.
I think mine have, although every day is still really really hard because i feel so unbelievably ill.

Not being able to support my friends and family when they need me is really hard. I feel bad that i cant stay up all night to chat to my friends if they are feeling sad or upset.

Not being able to care for myself as much as I would like is soooooooooooo hard.

Having such utter fear for my future is hard. The fact I have been too ill to go to school for such a long time!

Hard yet such an understandable struggle, but that doesn't make it easier to deal with though does it!!

I think it is an important milestone to realise that people are not simply the sum of their actions. That physical abilities are not the be all and end all of intent.

Ill people can learn a lot from this quote "Everyone is trying to accomplish something big, not realising that life is made up of little things." ? By Frank A. Clark

Feeling insubstantial as a person is very understandable when you often can not even do everyday things yourself. Yet the heart of you, your soul and the fact that you do anything at all to remain in this world, shows such courage that makes you beyond worthy!

I'm also so often blown away by how much kindness my fellow M.E. patients have to give to others. I have spoken to so many people on twitter who are so so kind to me and they haven't even met me! It's great that we can support each other! They can be suffering so extremely themselves, yet still have the thought (and put in the effort) to cheer someone else up with a kind comment or some helpful advice.

Not a week goes by I am not taken aback by how amazing my fellow M.E. patients are.

It's horrid that these same people are so often accused of being weak or having a huge deficiency of character, it is just so grossly unfair! ME is not phycological and we are not wrong in the head!

These very people are so often unheard. Yet are truly heroic! To be so continually judged, and to then still go out of their way to support one another, often to the detriment of their already fragile health, just bowls me over! It's fab! I feel so lucky that us spoonies are in a community where we really do stick together!

Especially as we are so often not believed to be genuinely ill.

Another thing I want to add is that having self worth can be really difficult when those around you do not understand that you are at least as ill as someone with MS, and they wrongly think that you are just 'fatigued' or lack motivation to do things or that you could get your life back if only you tried hard enough. Grrr it makes me so angry!

Having your character criticised and judged again and again can be very difficult to deal with, and when you are already so weak physically due to illness and have lost so much of what you thought defined you, it can be difficult not to start to believe such comments.

It is important to remember that nasty and belittling comments directed at the M.E. patient are almost always NOT ABOUT YOU!

They are an expression of an inadequacy in the person saying them. People that are happy with their lives and that are emotionally aware and mature do not spend their time picking on very disabled ill people! They just don't.

I know of some cases where doctors and 'specialists' have turned against the patient. One G.P. told a patients father that she was 'surprised that (___ insert patients name here) was not fighting this illness'.

Doesn't hearing things like this just make your heart sink?

If we did not fight, we would literally not be here.

The need to rest with this illness is so often misjudged as laziness.

But it is a sheer necessity, and an active action too! Resting when you have M.E. is one of the most essential, useful, helpful, proactive and sensible things to do, and is most certainly not a person simply 'giving in' or 'letting it get the better of you', nor a sign of a person 'giving up hope'.

Taking action to rest is such a pro choice thing to do, especially for future health. People who do not rest and over do it, adequately at the onset will almost certainly take longer to 'recover' from the illness or the relapse, and if they do 'recover' they are left at a lesser ability than before the relapse. Pacing is so important!

Now, I'm not claiming to know everything about ME but I do know one thing, resting is key!

Also...
Please none of you EVER doubt your own strength! Anyone with M.E. is stronger than they ever realise.

I also feel it is extra important what with being ill, that you can believe that you can handle things or 'cope' with things as they arise, which is invaluable with M.E. as it continually flings/pings (i couldnt decide which one is better!) new things at you to 'deal' with in life.

Here are some 'tricks' that i found online and adapted and used to help myself make sure that I am analysing problems or difficult situations and comments correctly and being fair to myself. (I'm sometimes a bit dramatic)

1. Imagine that the nasty/horrid and ignorant comment that someone has said to you (etc.), was said to a friend or one of your fellow M.E. patients. How do you feel about it now? And what advice would you give them?

(Often we are very willing to take blame for things that aren't our fault, because our self worth is very low due to illness. This is something i do, A LOT! But our desire to be fair and kind to our friends and fellow patients is often much stronger than our desire to be fair and kind to ourselves. I am soo harsh on myself sometimes! Oops! This way of looking at comments said by others helps us to treat ourselves at least as well as we would treat a friend. We have to be a good friend to ourselves when we are ill)

2. Imagine that the nasty and ignorant comment that someone has said to you, was said to someone with MS instead of ME. How do you feel about it now?

(Often we have taken in the de-legitimisation of M.E. on a subconscious level, and we may accept put-downs that we wouldn't accept at all if we had instead be diagnosed with MS. Thinking about an issue and how it would relate to MS, can help things be put into a proper and fair perspective)

Feeling so continually judged and assessed is beyond draining. I know for me this is a daily battle. And exhausting on my opinion of myself. Which is ridiculous because it has absolutely nothing to do with me and everything to do with other people.Yet understandable. But again, the knowledge of which does not often help hurt feelings.
One of the main things I find hardest about M.E. Is the powerlessness (i really hope this is a word!) it brings.

I wish i could help and do more. If we can't help, we feel helpless and if we feel helpless we feel worthless. Once again, alone in our bedrooms. Completely unable to do anything. And again it brings the notion of 'why am I here?'
Now I don't at all mean that to sound dramatic. But you know what I mean.

If we don't have a use or purpose, what good are we? What can we bring to this world?

Yet I would say to someone in my position that they are so important and that you are a brave, strong and inspiring person! Being you, exactly you, will bring the person in question strength.

It can be so terribly hard to have coping strategies. Regular people can let it all out in a jogging session, eat ice-cream (don't forget, lots of us are lactose intolerant!), call a friend, sit on the phone to them for hours and talk it out. Yet so many of us are left to analyse things inside our own heads, we don't have the energy to explain how we reel emotionally and our skin is sore so even though we desperately want a hug, it would hurt too much.

All of this can lead to such a low sense of self worth.

It is terribly sad that so many M.E. sufferers turn to suicide. But I really want people to know that they are worthwhile, no matter how ill or how unable they are. All ME sufferers are so so so special, they really are.

I know this sounds cheesy but you are not alone.

Be kind to yourself and don't beat yourself up for things that are completely not your fault and are out of your control is the most important thing. Talk to people with the same illness and that really get the issues if you can. And they might of gone through the same problem, so talking about it and working our a solution is so useful. Because i am only 15, most of the people i talk to are older than me and they've had ME for a longer period of time too. They have been able to pass on advice because they are more experienced. They can help me and advise me with what has worked and what hasn't, what helps them etc.

Try to be your own best friend too and spend some time thinking about the good qualities you do have.

As the saying goes 'You're never alone once you've learnt to count on yourself'. Being your own friend, is so vital to shaking off those false voices in your head saying you aren't enough. I often get what i call 'angel and devil moments', talk sense into yourself! Because you do have great qualities, a multitude of them,however unable you may be to see them! We can!!
You are worthy, beautiful, unique, valued, admired, strong, funny, needed, brave, sexy (ooh!), meaningful, brilliant and a hundred other positive adjectives and qualities that my brain can not conjure up right now!

Have you ever heard the quote 'One person speaking up makes more noise than a thousand people who remain silent.'?? Be that one person. Hear your own voice, rather than a multitude of negative ones the world seem to often speak about M.E. sufferers. Or, if you are able,be that one voice for another sufferer. Be heard, your voice matters!

If you believe in each other, and are able, write on the comment section below. I always love love love to get comments! It makes me so happy! Stand up and be heard in your knowledge that M.E. sufferers are truly worthwhile!!
If we are not there for one another, what hope do we have.

You there, reading this--You matter!!!!

Remember "To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment." - Ralph Waldo Emerson
and
"Nothing can dim the light that shines from within"-Maya Angelou

I know this has been a super long post so thank you so much if you have stuck with me until the end!

Please subscribe!

Chloe
Saturday, 18 August 2012

Emetophobia

Hey guys

Now, I have Emetophobia. Emetophobia is basically just a big-long-fancy word that means "phobia of being sick,"

Now, I am SO SO scared of being sick, of vomit and of other people near me being sick. I actually cant describe to you how scared I am!

I think about it everyday and I dread winter when everyone is sick, and there are stomach bugs going around.

I wash my hands constantly during the day and go through bottles and bottles of antibacterial hand gel.

I basically do everything I can to prevent me from getting ill.

I have anxiety anyway.

And I have panic attacks about being sick.

If someone in my family/house is being sick or has been sick, I don't know what to do! I'll shut myself away, I just can not be near them! I panic, have numerous panic attacks, start shaking. And then because I am so worried about being sick, I'll start to feel sick from anxiety. Then I'll panic even more and it will just go round and round in circles.

I just wanted to share this with you. Let me know if you have ever had a similar experience, hopefully I'll do some more posts on this soon!


Saturday, 11 August 2012

Beach

Hey guys

I'm so happy! Hippy hoppy happy! I went to the beach yesterday! Yay! Omg I am so so pleased! I didn't think I would be able to go to the beach this summer but I did and I can't tell you how positive I feel now!

When I woke up yesterday, I felt awful, I thought I was gonna pass out and I didn't feel good at all. All morning I felt horrid, but I got breakfast, got dressed, did my make up and got my things together :)

My nan and grandad came to pick me up at 12:30, and we drove to the seaside which is about an hour away from where we live, maybe a bit more. It felt so good to be in the car, and going out to somewhere other than an appointment!

We got McDonalds and ate it on the beach, then we sat on the beach for a couple of hours, and drove home again!

It was a really lovely, sunny day but not too hot, there was still a nice sea breeze. I put two lots of sun lotion on and still got tan lines and a little bit burnt!

I just feel so pleased and proud of myself that I managed to do it! This is a huge achievement!

Also, today I ordered the lovely glittery American Apparel Galaxy nail varnish! I can't wait for it to come!

Here is a picture I took of the beach yesterday:

Thursday, 2 August 2012

Imagine ME

Imagine ME

Imagine having a really bad hangover, a throbbing headache, then having to run a marathon, then coming down with the worst flu in the world, all at the same time.

On top of that, imagine someone is prodding needles into you constantly, into every single part of your body, nowhere pain-free, untouched.

Imagine someone spinning you around on a chair so you are extremely dizzy and nauseous and shining a bright torch in your eye so that light hurts. You just want to turn away and stop it but you can't.

Pain erupts from every place on your body like being wrapped in a blanket of nails.

Then also, imagine everyone has a speaker phone, so even a whisper seems like shouting.

You just want everyone to shut up, to be quiet and to leave you alone, somewhere silent and alone.

Imagine spraining every single muscle in your body (even ones you didnt know you had!) and having to carry someone equivalent to your own weight who is clinging on to your legs all the time. And they won't let go, no matter how much you beg and plead.

Imagine having muscle spasms almost constantly uncontrollably which feels like torture as its so painful and totally exhausting too.

It's the last thing you need.

Imagine someone speaking a foreign unknown language to you, really fast and you have to concentrate REALLY hard to try work out what they're saying, then you forget it.

Imagine having to sit in an ice bath for a long time, freezing cold, all the time.

Then imagine sitting in a sauna for hours and hours on end.

Imagine switching between the two, every few minutes. One minute cold, the next, hot.

If you think you can't get any more tired, imagine having panic attacks on top of that, & really bad anxiety which literally drains any energy you've got left.

Then, imagine staying like this, not knowing if/when you're going to get better, having to deal with this HUGE change of lifestyle.

Imagine never having a break, never getting a day off. You are like this for 24 hours a day. 7 days a week.

Imagine how tough and heartbreaking this illness can be.

How difficult and hard.

Imagine a lot of your support mechanisms breaking down, some friends move on.

Imagine not being able to go to work, school, or out with your friends.

Imagine having to deal with this on a day to day basis, not knowing how you are even going to be hour by hour.

And worse of all, imagine being told 'ME isn't real' and 'it's all in your head'. Even by medical processionals.

This is what we need to change. I can't control my ME, the causes, the pain, the suffering, the cure, but what everyone together CAN change is its understanding.

I hope you can understand.



There are people out there suffering. Nobody deserves to feel like this. ME patients were healthy, lively, fun, outgoing, adventurous, clever, the list goes on. They were hardworking, with great jobs, grades and ambitions.

Then they got struck down by this illness.

Some of these people are my friends and they don't deserve this.

Nobody does.
Wednesday, 11 April 2012

Wedding

Here are some photo's of Scotney Castle, in Kent. We went there last year and it was gorgeous! So pretty and sunny! And there was loads of lush flowers, the gardens were kept really nice! It is just a really lovely romantic place. I think I want to get married here when I'm older haha lol that's probably a bit sad, deciding stuff like that already! I guess, when you are sick, you spend a lot of time, in bed, thinking. So I have thought about things like jobs, marriage and kids. Hope you are all well xxxx
Tuesday, 10 April 2012

Energy and CAMHS

Hey:) attached a good picture, things not to say to someone with ME.
So exhausted. Had a CAMHS appointment at 9:30 this morning and didn't get out till 11:30. I'm not sure it really helped the M.E seeing as CAMHS doesn't deal with stuff like that. But hopefully they will help with my anxiety. I'm not entirely convinced with some of the stuff they said but a few things made sense.
The other day I was thinking about how I used to be and I would like to share with you, one day that I experienced two years ago. Here's the story:

I was in year 8 at school and had a trip to Horniman Art Gallery and Museum in London. That morning, I got up about 7, got dressed, had breakfast, the usual. I walked 10 mintues, to the bus stop and got on the bus to school. The journey took about 20-25 minutes. On the bus, I met my friends, we chatted and laughed. When I got off the bus, I walked down the hill, 5-10 minutes to school. Once at school, we waited around a bit and the teachers took the class register. We got on the coaches and the journey to the art gallery took about 100 mins (1 hour 40 mins), again, on the coach, I chatted with my friends, listened to my iPod etc. When we got to the museum, we went round an aquarium, museum, art gallery, gardens etc. I think we stayed about 5 hours and did a fair bit of walking, taking notes and answering questions. The journey back to school took about the same amount of time as it did to get there. We arrived back at school and walked up to the bus stop to catch the bus. Once on the bus, me and my friend Lois took the 30 minute journey back to her house. Once at her house, we watched TV, did homework and had dinner. Then we went with her mum and sister to the local community centre/working mens club. Her mum was part of Slimming World and we usually went with her, sat in the next room, playing pool and drinking coke with our other friend Eleanor. I'd go home about 8:30, shower and then bed! It seems so much compared to what my body allows me to do at the moment! Hopefully I will be able to manage stuff like that again soon!
Wednesday, 21 March 2012

ME

'M' and 'E' are two perfectly normal letters. Non-threatening.  Just two out of a possible twenty six. Put them together. ME. Me, myself and I. Me. A harmless word. Meaning 'yourself'. A word used everyday. But Add a full stop. A period, in the middle. Separating them, that's when they become dangerous.  And they have the power to change your life forever.  M.E. Myalgic Encephalomyelitis.
Saturday, 10 March 2012

GlamSticks

I was reading my mums Take a Break magazine this afternoon, saw this story and thought I'd share it with you!

'Super Sticks'
"I loved being a teacher and life was always busy. Then I was diagnosed with ME. I had to give up work, and leaving the house was a struggle. When I did, I hated using my dull crutches.
I came across a packet of rhinestones in a drawer and had an idea. I stuck them on my crutches and added glitter. People complimented me on my crutches and it gave me a boost. It got me thinking.
Soon after, a box of crutches was delivered. I painted and varnished them and cover them in crystals. 
Then I set up a company called GlamSticks. Customers came to me, embarrassed to go out with their crutches, and left feeling fashionable and confident. Last year, I won an award for GlamSticks. They've featured in two fashion shows and have been auctioned for charity. I'm proud to be transforming the lives of those with disabilities" 
Debbie Deboo

I thought this was great! Not only do you hardly ever read a story about ME in a magazine but to read a positive story about ME, is just amazing! I think that Debbie is very inspiring and has done really well!! She should be proud of herself! You can follow her on twitter @GlamSticks
Thanks for reading
Love and hugs xxxx
Wednesday, 7 March 2012

Wheelchairs and hospitals

For the last 4 or 5 months, I've been thinking about hiring a wheelchair from the Red Cross. I think it would help me be able to go out more and enjoy life. Hopefully it would make me more independent! 
At the moment, the only time I go out the house, is to the doctors! About 3 weeks ago I tried to go to Asda but only managed to be in there 20-30 minutes before I had to go and sit down in the car. 
My legs have been bad for about a year now. The first time I had any problems with them, was April 2011. I woke up one morning and I couldn't feel them at all. I struggled out of bed, got dressed and went to school. It was really hard to walk. If you imagine, not knowing whether your feet are on the floor or not because you can't feel them! I was in a wheelchair all day at school and I still couldn't feel them when I got home. I ate my dinner and dad decided to ring the NHS helpline. I spoke to a really nice nurse who asked me lots of questions. At the end of the phone call, she suggested I go to A&E. 
We arrived at A&E about 9pm, me and my dad. I had a blood test (I nearly passed out and I had a panic attack) and the nurse checked me over, about midnight.
They couldn't find anything wrong.
So we waited another 2 hours in A&E and then they send me along to the childrens ward. Another doctor checked me over but still couldn't find anything wrong. They said they wanted me to stay the night but I had a panic attack and said that I wanted to go home. They agreed and said that I should go home, get some sleep and come back at 8 the next morning.
The next morning, I came back and they did loads of tests on me again. Still nothing wrong. 
At 11am, my dad went to the hospital shop to get me something to eat and some magazines. I feel asleep and when I woke up I was really confused. Where was I? Where was this strange place? Why was i on my own here? 
I had another panic attack and I can't really remember much but a nurse had to give me an oxygen mask thing to put over my face. Dad came back and mum came to visit me. Another doctor came to check me over. Still nothing wrong. They sent me home.
Since then, I have been getting severe pain in my legs, as well as numbness and other symptoms. I can't walk too far and I think a wheelchair would improve my quality of life. I get really upset and frustrated that I can't go out and do things.
I have spoken to mum about hiring a wheelchair and at first, she wasn't too keen and explained all of the negatives to me, but I am sure about this. I have thought long and hard about the positives and the negatives. 
I am a bit worried that people will stare and ask questions but I guess I'll just have to deal with that when it comes to it. 
I would only use this wheelchair when I go out, once a week or so. I won't use it round the house because I want to use my legs as much as I can. 
I haven't spoken to dad about this yet but hopefully he will see how this can help me. 
Monday, 5 March 2012

My first attempt on posting photo's

This is the mug i made for my cousin Shannon, for her 6th Birthday in November :)


This is me and my little brother at the beach, last October. I wasnt too bad then, although i was in a lot of pain, i still managed to go out.

Me, enjoying Legoland, in October last year. Thinking about it now..... I probably over did it in October!! lol i really didint feel well that day, i was in a lot of pain and just wanted to be at home in bed :)
I cant work out how to get this picture up the other way! Never mind! will post some more pictures another day :) i havent actually taken many photo's recently. i guess, you take more in the summer because you go on holidays, have BBQ's and most of our families birthdays are in the summer too!
Tuesday, 28 February 2012

Anxiety

Okay, so, i said i would do a post on anxiety, and this is it.
I've always been shy and was quiet at school, but i started having anxiety problems when i was 9 or 10 years old. I remember having my first panic attack when i was 10. I was at a summer fate, and it was hot. There were lots of people, sounds, smells and voices. People hustling and bustling all around me. I was sweating, and the crowds became too much for me.
Anxiety is scary. Especially when it is new and you don't know why you are feeling this way.

Anxiety is the displeasing feeling of fear and concern. Anxiety is considered to be a normal reaction to most people. A lot of people become anxious before an exam or test, but when you are anxious all the time, about everything. That is when you know you have a anxiety disorder or problem. When anxiety becomes excessive, it may fall under the classification of an anxiety disorder.

Anxiety is a generalised mood that can occur for no reason.
The physical effects of anxiety may include heart palpitations, tachycardia, muscle weakness and tension, fatigue, nausea, chest pain, shortness of breath, stomach aches, or headaches. As the body prepares to deal with a threat, blood pressure, heart rate, perspiration, blood flow to the major muscle groups are increased, while immune and digestive functions are inhibited (the fight or flight response). External signs of anxiety may include pallor, sweating, trembling, and pupillary dilation. Someone who has anxiety might also experience it subjectively as a sense of dread or panic.
Although panic attacks are not experienced by every person who has anxiety, they are a common symptom. Panic attacks usually come without warning and although the fear is generally irrational, the subjective perception of danger is very real. A person experiencing a panic attack will often feel as if he or she is about to die or lose consciousness. Between panic attacks, people with panic disorder tend to suffer from anticipated anxiety- a fear of having a panic attack may lead to the development of phobias.
The emotional effects of anxiety may include "feelings of apprehension or dread, trouble concentrating, feeling tense or jumpy, anticipating the worst, irritability, restlessness, watching (and waiting) for signs (and occurrences) of danger, and, feeling like your mind's gone blank" as well as "nightmares/bad dreams, obsessions about sensations, deja vu, a trapped in your mind feeling, and feeling like everything is scary."
The cognitive effects of anxiety may include thoughts about suspected dangers, such as fear of dying. "You may... fear that the chest pains are a deadly heart attack or that the shooting pains in your head are the result of a tumor or something serious!!. You feel an intense fear when you think of dying, or you may think of it more often than normal, or can’t get it out of your mind."
There is loads of help out there for people with anxiety problems. There are various books, websites, and you can also see your GP about it too. One common treatment for anxiety, is for the patient to take anti-depressants. I am not sure why they called them that because they are given to just as many anxiety patients as they are, to depressed patients. I am currently taking Sertraline for my anxiety. Your GP can also refer you to a councillor or mental health specialist. 'Mental Health' sounds really bad. It sounds like they are implying that you have gone mad of something, but don't worry! I see a doctor at CAMHS, which is the Child and Adolescent Metal Health Service. They haven't been very helpful to me but they do help some people :)

Anyway, i think that's enough for now!
Goodnight xx

P>S no idea why some of it is unlined and it wouldnt let me type a full stop then either! Computer gone wrong! Will fix it when i can!
Thursday, 16 February 2012

Rapunzel

Yesterday I was talking to a good friend of mine, called Elaine. I was telling her how I really want to get out more and do all the things that normal teenagers do. I explained how I felt and realised that I feel a bit like Rapunzel. Stuck inside. I like to think of myalgic encephalomyelitis as my 'four walls'. Rapunzels four Walls were literal and although some cannot see mine, they are very much still there. I have no choice but to sit, looking at the same four Walls everyday. Not being able to go out, enjoy life, see the world. Spending a lot of time wondering, dreaming about things I could do. Looking out the window, watching the world go by. The only thing is, Rapunzel escaped. At the end of her story, she is free and lives happily ever after. But I don't know where abouts in my story, I am. I might be at the beginning. I might be near the end. But I guess, I'll never know. My story hasn't ended happily ever after, I am not free from my 'four walls' but someday I will be.
Wednesday, 15 February 2012

Guilt

After reading Sara Whitestones brilliant post about her 'Ball and Chain', it has given me the confidence to write about one of my feelings in particular. Guilt.
I do feel guilty that i have put my parents through a lot of worry and stress. Since I got ill, they have had to do so much and sacrifice a lot for me and my health. Our whole family has changed. We cant do the things we used to, and i feel guilty, it is all my fault. I feel like a failure. I feel unworthy. Undeserving..
Before i got ill, i went to Grammar school. One of the best in the area. I was bright, and did really well, getting nothing less than A's and B's. I got high grades and was making my parents proud. But now i am forced to be okay with what i've got. I have to accept that i am only getting C's because i have missed a lot of school. C is still average but i know that if it wasnt for M.E, i could be geting a lot higher. I have had to lower my exectations of my mind, and my body, and set more acheivable goals.
I do get disappointed with my body. I get angry if i cant do something or go somewhere, and if my legs dont work. I get upset, and cry and i feel like a burden. I feel like a burden on my family. I feel like my parents deserve a fun, hapy, energntic daughter who makes them laugh. They deserve more. They dont deserve me........
Or maybe i dont deserve them. I dont know?? Maybe they are just too good for me.
I feel that i am in the way. That i am an inconvience. I feel that maybe their lives would be better if i was dead. But, i guess, theyre my family, and they have to stick by me.
But what about my best friend. Lucy. We've known each other since we were 7. She doesnt owe me anything. She doesnt have to stick by me. It hurts me to think of all the things i used to be able to do with her, the things that i cant do anymore. I know that i cant be a brilliant best friend for her all the time, but she is still amazing to me. She has to allow me to have naps. She has to come to visit me cos i cant come visit her. We cant go shopping or out too far together. But she still supports me, which i really dont understand! Why would anyone want to be best friends with me??! Its hard to get my head around why she would want to stand by me. I wouldnt blame her if she walks away. If she doesnt want to be my friend anymore. We've been through so much together, but how can she love me?


How can anyone love me?
Love and rainbows xx
Friday, 10 February 2012

How to help a friend with M.E.

The hardest thing about having ME/CFS is that, for a lot of people, it is chronic. And, because you are sick all the time, you get nothing, whereas your friend who has been in bed with flu for a week, is suffocated with flowers and ‘get well soon’ cards! I get nothing. Am I any less, sick, sad, frustrated, lonely or bored? NO. I need your love, and support now more than ever. When everyone else forgets that I am in this situation, that I struggle with my illness… please remember. It didn’t go away, I didn’t forget, I need you to be my friend.
I dont want sympathy, just empathy.

Things to buy and ways the cheer your friend with, M.E, up:
1.) Buy them some nice pajamas, bedsocks or slippers! These will be well used as a lot of M.E suffers are bed-bound or cannot get dressed somedays. They are also really comfy!
2.) Rent or buy them a DVD or two, and maybe a portable DVD player if they cant get up to sit on the sofa to watch the TV, and dont have one in their bedroom.

3.) Buy them a novelty or funny pillow or cushion! This will make them smile and cheer them up, and everytime they look at it, they will remember that they are not alone! It is also useful and can be used to prop them up or for them to lean against.
4.) Buy them some cute socks with non-stick bottoms! These are cheap, and practical! Think about the person you are buying for. Do they have a particular interest  or hobby? Is their a specific cartoon character or colour that they like?
5.) Offer to put some new music or an audiobook on their ipod for them!
6.) Buy them a crossword puzzle/suduko/game book or magazine, great for kids, and adults too!
7.) Buy or lend them them a deck of cards. Although, i expect they will have some lying around the house from christmas crackers! If so, dig 'em out and have a game of snap!
8.) Buy or lend them a rubix cube
9.) Buy them a held electronic game, i.e. a Nintendo DS. You can get a variety or games for all ages!
10.) Magazines that are personalized to the patients hobbies, tastes etc. E.g. crafting books, politics, fashion etc.
11.) Buy them a tube of unscented hand lotion and some unscented antibacterial hand gel, two things that you can never have enough of. Lots of medications dry out the skin.
12.) Also, baby wipes come in helpful too, if you cant get to the bathroom for a quick freshen up! check out your local supermarkets ‘baby’ toiletry range too, as they are kind to the skin and wont irritate!
13.) A pretty diary or notebook. Spend time, deciding on the cover etc to suit the patient – really good for writing down whats going on, doctors instructions, goals, when to take tablets or medication and things to do! This is also great for writing down goals and aims, things that they want to achieve in the future.
14.) A ready-to-use craft kit, such as a cross stitch set or scrapbook. It is good to feel productive or creative even if you cant leave bed.
15.) If the patient is not restricted with their diet, bring them a  treat! Their favourite snack, chocolates or cakes are great or order them their favorite takeaway!
16.) Buy them flowers! Simple, but effective!!
17.) Bring them some note-cards with pre-stamped envelopes, this way, they can write to whoever they want!
18.) Offer to do their nails or hair! Make them feel special, and pampered!
19.) Offer to do something for them, around the house! Clean, cook, go to the supermarket and stock up on bread and milk for them?
20.) Cook dinners for them, that are easy to freeze and defrost
21.) If the patient has kids, offer to take them out or baby-sit for the day!
22.) Ask what you can do to help, or if they need anything! Sounds silly but is really helpful!
23.) Bring them a selection of board games over
24.) Offer to take care of pets, walk the dog!
25.) Send them a card, get well soon or thinking of you!! It will really cheer them up and put them in a good mood for the rest of the day!
26.) Ring them up, everyday at roughly the same time, to ask how they are
27.) Send them a care package. Get a box and fill it up with goodies. You don’t have to fill it with anything expensive; you can go to the pound shop if you like! Just fun little things, to make the patient smile! Add a note, with a funny message or something to add a personal touch!!
28.) Send them a text or an email to show that you have been thinking of them!
29.) Offer to go with your friend to their hospital or doctors’ appointments!
30.) Help them with everyday tasks. When I am sick, sometimes I am overwhelmed with everyday jobs and errands that I no longer have the energy to do.
31.) Just sit and chat to them for a bit!
These are just a few things that i have thought of.....
Thanks for reading!
Chloe xxx
Thursday, 9 February 2012

Myalgic Encephalomyelitis

Myalgic Encephalomyelitis - M.E.
The Symptoms:
    1. Persistent fatigue that does not improve with bed rest or sleep and is severe enough to reduce average daily activity by at least 50% for at least six months.
    2. Muscle weakness and pain, especially in the shoulders, upper arms, thighs
    3. Muscle twitching
    4. Blurred vision
    5. Numbness/pins and needles
    6. Tender swollen lymph nodes, particularly underarms and neck
    7. Joint pain
    8. Poor circulation (cold hands and feet)
    9. Chronic sore throat, often with recurrent flu-like symptoms
    10. Irritable bowel syndrome
    11. Sensitivities (to light, touch, food, chemicals, perfume, paint etc.)
    12. Alteration of taste and smell
    13. Headaches
    14. Rashes
    15. Dryness of mucous membranes (throat, mouth ,eyes)
    16. Mouth ulcers
    17. Uncomfortable or frequent urination
    18. Poor concentration
    19. 'Foggy' thinking
    20. Difficulty speaking and choosing words appropriately (for example saying, black when you mean white)
    21. Poor memory
    22. Interrupted sleep patterns
    23. Depression
    24. Mood swings, anxiety
    25. Brain fog
    26. Inability to control your temperature
Not everyone with ME experiences every single one of these symptoms and there may be a few that i have missed out.
Thank you for reading xx
Sunday, 5 February 2012

Blogging

Happy Sunday everyone! Hope you are all okay! It started snowing about 8;30pm yesterday evening and carried on, all through the night. There is approx 4 inches out there now, which is quite a lot! At the moment i am not well enough to go out and enjoy the snow properly but i may go out in the back garden for 5 or 10 minutes if i feel up to it, this afternoon.
Okay, so, today i thought I'd do a quick post about blogging. Just to let you know how i blog, why i blog and the format in which i do things. Okay, so, to be honest, i just write. I don't plan ahead, read through, or write out a draft. I think, sometimes that is the best way to do things. If i sat here and planned it all out, worried about grammar etc, then i think it would be boring and would just end up a mess! I honestly just write from the heart and I am sorry if i ramble on sometimes. I have no idea if you guys want to read what i write, or if you'd like me to explain something a bit more, or if you have any questions, please comment or contact me on twitter, @ChloeStickings! I need advice and suggestions! Um...I blog for something to do. To let you guys know what living with ME is like and also to record my process and to raise awarness of ME so that hopefully, people out htere, can see how bad it can be and how much it has changed my life. To be honest, i think my 73 year old nan can go out and do more stuff than i can. She goes shopping into town once a week, looks after my 3 year old cousin at least 4 or 5 times a week. She goes out to visit friends and relatives and has more energy than her 14 year old granddaughter!! Which, really, is not right at all. Things are supposed to be the other way round. Yestetday, i had to get my dad to carry my own handbag because it was too heavy for me. And it takes me at the an hour to write this everyday as i keep having to stop to rest because i am tired, dizzy, in pain or my eyes hurt from looking at the screen.
okay, so, i have rambled on and i have no idea what i have written but yunoe!! Also, i have really bad brain fog, bad memory and bad concentration (one of the symptoms of ME) so i applogise if i repeat myself or dont make much sense! Thanks for reading!
Chloe xxx
Thursday, 2 February 2012

The sick girl

I don’t want to be the 'sick girl'. Just because I’ve been diagnosed with something, it doesn’t mean that I am defined by it. I am my own person, and yes, I have ME but I am my own person, I have a personality and likes and dislikes.
I was me, before ME came along. It is simply, something that i have, not something that i am.
ME is sometimes known as the 'invisable illness'.
I know that I sometimes don’t look ill but believe, me, I feel it! ME is an invisible illness and not everyone understands that. Sometimes I wish that I had a broken leg or something more visible so that others would understand a bit better. I know that I look completely normal but I do have ME. It is surprising how many people give you strange looks when you tell them, they look at you, as if to say, “You don’t look ill”, no, maybe I don’t, but I am and looks aren’t everything.
As a girl, i think its probably easier for us females to hide how we feel. We can slap on a bit of make-up on, and get help with doing our hair. We look completey normal, and most of all, healthy. Don’t judge a book by its cover. Even if you see me out, at the shops, or in a cafe, it doesn't mean that i am back to normal. This is probably the first time i have been out the house in weeks, or maybe months. I will probably spend the next week bed-bound, and in servere pain and discomfort. Please remember that.

This disease is limiting. And it's a disadvantage I might have for the rest of my life. (Hopefully not!! Fingers crossed) But I know that I can get through this. I am trying to smile through this. I'm getting through this. I really do believe that staying positive is an important part of getting better and recovering from my illness.
It upsets me, and weighs me down to think about the things I once was capable of, and all the things that my friends are able to do on a daily basis that i cant.  The things that i used to do everyday, without even thinking about. I feel like i have taken advantage of my body and underestimated how much energy it takes to get up in the morning, make and eat breakfast, get dressed, clean my teeth, climb the stairs. I think about how much I've missed out on... How much has been stolen, and taken away from me...  This past year was one I never would have expected. I never imagined that i would get ill. I think, its one of those things that you are aware of. You know that things like this happen in the world but you never imagine them happening to you. This year has been the most scary, painful, exhausting, upsetting, and trying times for me. Times of unending struggle, pain, and fatigue. And i know, at the moment, that its not going to end. No matter how much i hope, and pray that it does.

Chloe xx
Please comment, what can i improve on?
Sorry if ive made any spelinglol
Wednesday, 1 February 2012

"We'll cross that bridge when we come to it"

"We'll cross that bridge when we come to it" is a common phrase used by me and my family.
ME is an unpredictable illness, and you dont know how you're going to feel in a few hours, let alone a few days. In a week, i roughly have, 2 'good' days, 2 'bad' days and 3 'average' days. But it could change, from one week, to the next.
We cant plan ahead. As a family, we cant orginise a trip to the coast, or wildlife park, because we dont know how i am going to feel. I may have a good day, be able to walk a short way, and be out for 2 or 3 hours. But then again, i might have a bad day, bed-bound, unable to swing my legs over the side of the bed to get out; hardly able to walk downstairs or to the toliet.
"We'll cross that bridge when we come to it"'What' and 'if' are two perfectly ordinairy words, you probably use them at least once or twice, everyday. Two words, as non-threatening as words can be. But put them together, side-by-side and they have the power to leave you wondering, and haunt you for the rest of your life. What if. What if?
What if I had been well enough? What if i had been able to walk? What if i wasnt ill? What if i had gone out?
These are questions that i frequently ask myself, and sometimes even my parents.

Me, "What if i'm not well enough to go out tomorrow?"
Mum, "We'll cross that bridge when we come to it,"
This is a common coversation between me and my mum. With ME, you just have to take everyday as a new one. Enjoy every good moment, and get through every bad one. You cant paln ahead or make decisions too far into the future because you dont know how ill or how well you are going to be.

Thank you for reading, please comment if you have any advice, suggestions or questions for me. Or follow me on twitter @ChloeStickings
Thank you!
Love, Chloe xx
Tuesday, 31 January 2012

My First Post

Hello everyone!
First of all i just want to thank you, once again for taking the time to read this blog. As you can see by the title, this is my first post so i apologise if it is not very good!
So, today, i just want to say hi to you all and introduce myself, so I'll start off by tell you a little bit about me!
My name is Chloe, I'm 14, and i have M.E (myalgic encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS). Now, I've had ME for probably, about 3 years now but i was only diagnosed in October (I'll tell you a bit more about my diagnosis later on). For those of you who don't know what M.E is, I've posted a few links below.
http://getwellfromme.com/
http://www.ayme.org.uk/
Aside from ME, i also suffer with anxiety, but apart from these illnesses, i really am just a normal 14 year old girl!
Now, why did i start this blog, you may ask, well, earlier on today, i was talking to my friend Elaine, on twitter (go follow her, guys, she's amazing @laineyblueeyes). I was telling her how bored i am, how i never have enough energy to do anything, or go out anywhere. This is when, she suggested i write a blog. at first i wasn't sure. I didn't think that anyone would want to read it. But as i thought about it, it doesn't matter if no one reads it. If i enjoy writing it, and it helps me and gives me something to do, then why not??!
ME is an extremely difficult illness, at the moment, i am house-bound and on bad days, i am bed-bound. I cant go to school, I cant go shopping, or out to see my friends, i cant exercise or enjoy life as a teenager. But despite all that i am quite happy. I have some wonderful friends, some whom I've known most of a my childhood, some whom i have met on twitter, and some whom i never who have met if it hadn't been for ME. Every cloud has a silver lining, right?
Anyway, its getting late and i really should be going to bed now as my home tutor is coming to teach me tomorrow!
Hope you are all well, you have no idea how much it means to me that you have taken time to read my ramblings on! :D
Love you all!
Goodnight xxxxx