Why I wear make up

Spoonie: Why do i wear make up?

Surely if you feel so ill, you wouldn't bother with make up?

I guess thats what I'd think too if I wasn't sick but I am.

Being ill every second of every day is not like having a virus or flu that lasts for a few days. I understand thst if you are temporarily sick, you don't want to wear make up but if being sick is your day to day life, you have to try and get on with things and not let your illness get in the way of everything! If I had a bug or virus, I wouldn't be expected to work but having a chronic illness, I am.

ME and fibro is not going to go away. It could be with me forever, or for a good few years at least, so why shouldn't I make myself look respectful, 20 days a year?

I don't want to look back at photographs of myself on my birthday or at Christmas and think how ill I looked. I want to remember how hard it was to get to that point and how I survived, how I had a good time and how this illness did NOT win. It didn't stop me from going out or from celebrating. It's depressing to look rubbish all the time. I dont look like I used to. Some people might not realise this but I've put on weight, I don't wear the same sort of clothes and I don't wear make up everyday. I don't style my hair or wear fake tan. I look different than I used to. I've put on weight and don't wear the same sort of clothes.

I put on make up because it's the only thing I can do, to make myself look more normal. And that way, when I look in the mirror and see someone who looks healthy, it makes me feel less isolated and lonely and I get to pretend for a few hours that I am just a normal girl, not one with a chronic illness.

Putting on make up DOES take an awful lot of energy from me, and makes me feel ill, but then again, what doesn't?

I wear make up, about twice a month? Sometimes more, sometimes less. I always put it on if I am going to a family party or to see friends or something. If I'm going to the doctors, I don't bother but sometimes it's nice to make yourself feel special and concentrate on your appearance.

Inspired by Kelly Fricke

Worthlessness - Emotions we experience when chronically ill

Hey guys,

It's me again! Okay, let's be honest, who else would it be?!

WORTHLESSNESS - (I hope that is a word!)
We live in a society where the first thing people ask you (when you first meet them) is "what do you do?", meaning 'for a living' its quite easy to feel like you do nothing when you're ill. (If you are a teen like me, you get asked what school you go to, and I have no idea what to answer when they ask that!) Awkward!!

Many spoonies with these illnesses don't have the strength or energy to even do ordinary household chores let alone hold a 9-5, Mon-Fri job outside the home too.

Even those who don't have the fatigue problem still are very limited because of having to avoid chemicals and dust and mold, bright lights (sitting in front of a computer or in a shop), loud noises and other things.

So the 'what do you do' question is quite tricky! Others seem to judge us by that standard too. So what is our worth? If you are a doctor or a teacher, you are 'worth' more than someone who is a cleaner or works in a shop.

All of us who are ill go through this questioning at least periodically, and especially during long periods of 'crashes'. We don't even know who we are anymore! :(

We're sure not like we were pre-illness! Some can't play with their kids like they used to, do the hobbies or sports that they once loved. And we feel like we're always needing something, some help. We feel very dependent on others and sometimes we feel that others resent that.

We don't want to ask for too much because after all what do we have to offer in return?

The frustrating thing is, us who are ill, are often very bright, clever people. Our dreams were to become vets, or firemen!

We had/have potential and it's really hard to explain that to someone.

How do you feel about this? Whether you experience any of these emotions or symptoms regularly, I just wanna say that you are not alone. Sometimes it's hard to tell how you feel, especially if you are feeling more than one emotion at a time.

I hope this series is helping some of you

Chloe xo

Emotions we experience due to Chronic illness - REJECTION

Yes, it's that time again. I'm really enjoying writing these posts, so let's crack on with another one!


REJECTION -
I'm afraid that way too often people who are disabled, unable to work or participate, having weird sounding invisible symptoms end up feeling rejected.

Sometimes that is because they are being rejected. We live in a society who values most productivity.

Most self worth comes from what you 'do' and we can't do much. Sometimes we are shunned, sometimes actually told off for not being able to work, go to school or care for others. Some think that we are simply not trying.

When other people behave like this I try to remember that they are afraid. Our illness scares them. It exposes their own vulnerability and people feel very comfortable when they feel vulnerable. We are a reminder to them that nothing in life is sure, nothing forever. Nothing can be planned too far ahead, life gets in the way. Things happen. I certainly didn't imagine myself like this at 15. I thought id be in school, with friends, going shopping every weekend, maybe having a boyfriend? But no.

It is often easier for otter people to deny that we are really ill than to face that possibility themselves. Sometimes the rejection comes from indirect comments and dometimes, we spoonies can be more sensitive than others. We can also be stronger than others but we do have more time to sit and think about things that people have said about us. Resting, not being able to sleep, things go round and round in our heads.

I feel rejected as a teenager. I don't feel that I'm a very good teenager. I don't want to go out to parties because I know how crap I'll feel afterwards. I won't know anyone, I don't have a boyfriend and I don't have many friends. I try to be independent but I'm not. I don't go to school and I don't know the latest celeb gossip. I don't listen to the latest music and I don't wear fashionable clothes. I don't smoke, drink or go clubbing. So there you go. Not like other teenagers at all.

Rejected!!

Xo

Chronically ill - Emotions - GRIEF

Yes, grief. It's a bit of a different one today but hopefully it will make sense. So let's get started!

GRIEF -
After the initial shock of being ill comes a time of grieving.

There are loads of loss's that you will encounter. Loss of health, jobs, abilities, money, lifestyle and often friendships and other relationships. It sometimes feels like you are a completely different person and that you have lost a part of yourself.

It's hard to be yourself and express yourself when you feel so ill and have so little energy.

There's a loss of income, loss of enjoyments, hobbies and loss of freedom. Chronic illnesses especially those like these that affect every part of your being cause you to feel like you've lost your old self. With the recognition of those losses comes a time of mourning. Some people experience this briefly, others go through this period for a very long time. Like other illnesses a time of feeling angry follows too. Wanting to fight back. These losses are very real and some are forever.

It's weird to call it "grief" but really, that's what it is!

You have lost so much and it's hard, especially if you got ill very suddenly, and BAM! everything has gone.

Anyway, I guess that's enough for now. I'm so impressed with myself that I have managed to keep up this series, usually I give up or forget after a few posts of a 'series'! Am still going strong, and I'll hopefully see you next time! *waves goodbye!*

Xo

Chronically ill? Emotions we experience - LONELINESS

Hey guys, today's post is going to be about loneliness. Being chronically ill is very lonely, wouldn't you agree? So here we gooo....

LONELINESS-
I can't begin to tell you in words about the aloneness and loneliness those of us who are fairly house bond feel. It sucks.

Loneliness and aloneness are different. We feel both. No matter how many others you may know with the same illness you still are very much alone in your own body. All illnesses are like this. It really does help to be part of a support group of some sort though.

Then there is the loneliness. We're isolated, unable to go to social 'do's' without paying a major price with our health, for some life risking. After a while friends fall away as you can no longer do things with them. Losing friends is hard but you just have to remember that you are better off without them. True friends will stick by you, no matter what.

Some get sick of hearing about all the symptoms (i moan a LOT. am really trying to stop but its hard!) or frustrated with not being able to help. Most public meeting places are filled with things unsafe or difficult for some spoonies.

Most people with CFS/ME/CFIDS or FM don't have the stamina to participate witg a lot of things such as shopping and going to the cinema can be far too loud for some. Some people use a wheelchair so need to know that the place they are going to, has disabled toilets and ramps etc.

Over time they find themselves more and more apart from the rest of the outside world. Days on end without a change in scenery can be so lonely. You get stir crazy but don't even have energy to stir! You may crave to have a friend come visit only to find that when they come you get so exhausted and wiped out from trying to behave 'healthy' that you wish they'd cut the visit short. (Who agrees with me?! Acting 'healthy/okay' is exhausting!)

But...You fear friends and family will take that wrong and you don't want to hurt them either.

The times that I feel most alone are mostly during the night when I'm in a lot of pain and I'm maybe sitting downstairs, alone in the dark, crying. The pain is overwhelming and everyone is asleep, expect me. I can't sleep and insomnia is lonely.

Oh, this spoonie business is complicated and hard work. Being a teenager with a illness is really hard and I feel like I'm missing out on a lot of the stuff that others my age are doing. It makes me feel lonely because I don't really have many friends and those that I do have, are on twitter etc (which makes me sound so sad!).

Anyway, I better wrap up for today. Thanks for reading, see you all soon!

Xo

Chronically ill - Emotions - DEPRESSION

So, it's that time again. Today we are going to talk about...

DEPRESSION - Some people with these chronic illnesses suffer greatly from depression (maybe I do, maybe I don't. I don't know!) They get even more depressed listening to people saying that they're ill BECAUSE their depressed. It's a circle. Round and round and round.

These PEOPLE are suggesting (okay, not even "suggesting, because lets face it, they are "telling" you that, that is what is happening. When its not!) they're not really ill, only depressed therefore THEY should be able to do something about it. This simply is NOT true.

These illnesses affect the brain and brain function. Some of the medications needed do too. Top that off with how much they've had to give up to remain at the level of health they are at and you can surely see why anyone would be depressed! I mean, what is there to be happy about when there is so much you cant do and you are stuck
In bed all day? Being told your depressed is not encouraging or uplifting either.

Some people also believe that you cannot have a physical and mental illness at the same time. (Especailly if the physical illness is ME, fibro or something invisible) No, it is simply impossible to have anxiety and ME. Of course you can have both! A lot of the time, mental illness is a secondary illness/symptom to/from the physical one. Hope that makes sense.

Medications can help along with making sure to take the best care of yourself that you can like eating well and getting enough rest. For the depression that comes from being sick all the time, unable to function normally, feeling so hopeless, useless and ill.

I try not to be too focused with feeling blue as if somehow that is wrong to feel. But if any of you who are reading this, have a friend or loved one who is chronically ill and depressed to be thrre for them, ask them how they feel, not just physical but emotionally too. Ask how it FEELS to suffer like that. Be supportive and don't stop loving them. Don't try to force them out of it or hate them for it. Just be there and listen.

Have YOU suffered from depression whilst being chronically ill? Let me know and leave me a comment. Hope you are enjoying this series so far.

P.S. I'd just like to point out, I am in no way saying all that needs to be said about each of these emotions, I'm simply writing down my train of thought.

New post coming soon...

Chronically ill - the emotions we experience - DISCOURAGEMENT

DISCOURAGEMENT - I'm a nosey person [i take after my parents, hehe!] and whenever something impacts my life, or even if i just come across it, i usually research it. I love learning and finding out about new things so one of the first things i did, when i was diagnosed was look up ME online and in books at my local library. I read and read and found out a lot of stuff, often getting sidetracked along the way by reading about Fibro and the NHS and a number of different things.

I've read all the research, the books, the blogs, the websites, tried all the suggestions, pushed myself, let myself rest and NOTHING seems to make much difference.

I like to think that I'm pretty clued up about ME, I don't know everything by any means but I know a LOT. And I've tried a fair few things to help make me feel better. These include: CBT, GET, magnesium oil, physio, different vitamins, cutting out dairy from my diet, Epsom salts... Lots of things. Nothing has cured me but some of the above have helped.

Anyway, I'm going off track.
Friends don't understand why I won't come to their house, some of my family thinks I'm faking it. (Maybe I'm just being paranoid?) If I do more to take care of myself someone thinks I'm selfish (typical teen!) or neglecting my family and others.

If I take care of everyone else first I get sicker. Discouragement is something we face every day.

I feel discouraged when I try a vitamin or a treatment to try and make me feel a bit better and it doesn't work. I feel discouraged by 'doctors' sometimes and sometimes by family and friends even though I'm sure my friends and family don't mean it.

It occurred to me one day that when I've gotten most discouraged it was because I had been putting my hope in things or people who had let me down.

I get my hoped up waaayy too easily. I have one good day, and get excited that I am getting better and if I can't do something that I have been planning, it really gets me down and I DO feel discouraged. And I often feel like giving up. Nothing seems to work.

Everything I tried to do had been like smacking my head against the brick wall. I try so hard it seemed like there was no direction left to go and no resolutions in sight anywhere. Within myself, through my eyes there is no hope left sometimes.

Do YOU feel discouraged by this illness? Let me know your thoughts. Another post on Emotions we experience when chronically ill, coming soon!

Chronically ill emotions - FEAR

Today I'm going to talk about emotions that you get if you are chronically ill. Now, i have spoken a bit about this before, one of my first posts was about Guilt and that was written nearly a year ago so i figured it was time to cover some others.

If there is one thing I do not want to hear from you, it is that this illness only exists in my head!

Some seem to think that if only I would do this or that, think this way or not that way I wouldn't be sick.

It would be nice if it was as simple as that but its not. These illnesses are very real and very physical.

Unfortunately there is not enough research and probably not of the right type going on yet. Everyone is looking for a magic cure, typically a pill. With these illnesses it is most likely a combination of things that causes them and a combination of things needed to get better but first we really need a diagnostic test to test for ME, etc.

Most researchers are looking at environment toxins and viruses as being the causes of our symptoms. These illness do affect the brain. Studies have shown abnormality in such things as blood flow, inflammation and biochemical balances and glands (wow i sounded grown up then!)

But, anyway, onto the emotional aspects of dealing with chronic illness, particular chronic illnesses that the general public and the media has not accepted as real or physical yet. Some of these emotional reactions are directly caused by chemical and other exposures and some are from living day to day with the illnesses.

First let's start with FEAR [Sorry, this could be a long post, or maybe I'll do it in a few parts?] While not a lot of people want to talk about it this is something that a lot of people experience. And I feel like a lot of people feel that they have to be brave or strong, that they are not allowed to be scared or frightened. A lot of these illnesses are often slow in being diagnosed and symptoms are so varied, so weird and often mimic other serious illnesses. Its hard to imagine you can be this sick and not die, especially if you have been very healthy and active before or if the illness has come on suddenly.

There is fear of always being in pain and that you won't be able to handle it or cope. There is also fears of rejection and loneliness; Fear is not fun to deal with!

Its easy to be afraid of so many things when you're ill (I'm afraid all the time). Sometimes it feels like the world itself is attacking you. In some ways becoming ill is like having entered a new land, full of enemies and things that are evil and against you! (Symptoms and even doctors! etc.)

It's scary to have to go through different things. Staying in hospitals and having tests etc. I guess it depends on the person but some people have to face their biggest fears, being ill. A girl I know, I absolutely terrified of needles and since getting sick, she has to have blood tests etc a LOT more which is very scary for her because thst is HER fear. It's different for everybody but being ill is definitely scary.

Part #2 coming soon! Hope you enjoyed! Don't forget to subscribe and leave me a comment!

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

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.

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!

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.