Tuesday, 26 February 2013

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
Tuesday, 19 February 2013

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!

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.


Monday, 18 February 2013

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!

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!*


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....

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!

Sunday, 17 February 2013

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...
Saturday, 16 February 2013

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!
Friday, 15 February 2013

Emotions we experience when chronically ill - ENVY

Next up in this 'Emotions we experience when chronically ill series' is....

ENVY - being envious every so often is normal too. Its not that you want to see family and friends do without too, its more than you wish so badly you could do something and join in with them too. Missing out is really hard and reminds me of what I have lost, I find that sometimes I want to hear all about what my family has been up to, but sometimes I don't, I simply get too jealous or upset.

One other thing I find annoying is when people (I have had a couple of friends and family members say this to me) say that they WISH they could stay in bed all day. They wish they didn't have to go to work or school. I find this really frustrating as I feel that they should be grateful that they are healthy, they should be grateful that they are well enough to do those things. They claim to be envious of me but I think that, after a week or so, they would get bored and change their minds!
Don't know about you all but I want to be healthy! Typically being chronically ill means being chronically poorer than others. (i am lucky that i am young and dont have to pay for food, somewhere to live, bills etc just yet). Sometimes looking around at all the things that would make life a lot easier but we can't afford to buy then seeing it makes us envy the owners and wish that we could afford those things too.

Often people who are ill, have to spend their money on things such as medications, hospital bills and things to help them in their everyday life, whereas healthy people who don't need that stuff, can spend money on clothes, cars and holidays.

Talking of holidays. That is another thing we can become envious of. Often spoonies, aren't well enough to go on holiday or to travel abroad so we do get envious of those who are able to, and who bring back photos to show us, and come back tanned, glowing and full of fab stories.

I could go on and on all day about the stuff we get envious of, when chronically ill, but I think I'll leave it there for now.

Thanks for reading, I'll see you next time! *waves goodbye!*
Wednesday, 13 February 2013

Emotions we experience when Chronically ill - ANGER

Hey guys, so following on from my last post, I'm going to talk about another emotion that people experience when they are chronically ill.

ANGRY - Ok so I don't feel this one too much myself. I usually feel annoyed and frustrated but its not very often i am properly angry.

They say this is a stage of grief and yes, we have suffered great losses. Usually I don't feel angry unless I've seen others who've been treated unfairly, or neglected by doctors or their families and who have so many special needs and need to be looked after but receive no advice, love, care or help. Typically it doesn't take long after becoming ill where you're unable to work and function normally before you find that there are other repercussions you hadn't even THOUGHT about like money and friendships, having basic everyday needs taken care of.

This is especially true for young people who never got a start in the work place and have never been paid, lived on their own or done anything like go to uni, on holiday on their own etc. Its also true for women who made their life's work their home and family. No one likes being dependent on others and now you've found there is nothing you can depend on.

We all feel angry sometimes. Anger itself is not a bad thing but acting violently or badly out of anger is. I think usually when we feel angry it is towards all the injustices we and feel so helpless to do anything about. We feel abandon and forgotten, neglected and sometimes even abused.

It also helps to know that we are not in this alone defenceless, because there is a whole other community of people just like you, out there. It is difficult not to lash out sometimes when others mistreat us especially when we feel so ill we have little emotional self protection left and have to depend on others so so much. Lack of sleep doesn't help, it certainly makes me more grumpy and more prone to being angry.

I think the 'thing' I feel angry about or towards the most, is probably the illness itself or my body. I am angry that MY body wasn't strong or healthy enough to not get this illness. I am annoyed with my body for putting me through such horrible stuff and I am annoyed with the illness because it wrecks lives. This illness has hurt so many of my friends (people I met through twitter because of ME) and I feel so angry that they have to go through this because it's not their fault!!

Do you get angry? What do you get angry about? Leave me a comment and let me know. Part #3 coming soon.
Tuesday, 12 February 2013

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!
Sunday, 3 February 2013

NOTD - Essie - Bikini so teeny

NOTD - Essie - Bikini so teeny.

This purpley-cornflower blue colour is just amazing. It's bright and pretty and I just know that I am going to be wearing it A LOT this Spring/Summer!!

Sorry for rubbish pics.
The polish has a very very slight shimmer in it and doesnt really show up at all. Its really gorgeous though!