Hey guys
I'm so sorry that I haven't been posting much recently. I've been so ill and so busy with exams and school work.
Tomorrow is ME awareness day so I thought I'd just have a little ramble about how ME affects me.
ME affects everything I do. I get so frustrated because I don't have much control over my body or my symptoms and it's so annoying! I get frustrated that I can't do the things that I want to do and I get really upset that I am missing out.
I don't have the life of a normal teenage girl and I can't go to school. I don't have many friends and I can't do a lot of the things that I enjoy; like going out shopping etc.
ME has affected the way I look. I can't shower everyday and I don't wear make up very often even though I really want to. I love make up and beauty and read tonnes of beauty blogs and I watch loads of beauty YouTubers but ME means that I can't portray my interests in my appearance.
I have to wear comfy clothes because of the pain and fibromyalgia and I have also put on a lot of weight through not being able to exercise.
ME has affected my friends and family and it has affected things like birthdays, Christmas, holidays and days out. There is so much to think about when you have ME and you can't just go out and do something. You have to rest beforehand and make sure you have a free day(or more, depending on what you are doing) to rest afterwards.
Sometimes I can't read or watch TV because I makes me too ill.
I get a lot of pain which is really scary and really affects me because I don't know what is going on inside my body and I don't know if the pain is going to get better, get worse or whether it's something else, not fibro.
There are so many factors that can determined how sick you are feeling everyday and it's really unpredictable because sometimes if it's really hot, I get more exhausted and the sun can make me ill. The weather can change how you feel and so can different emotions. I get too excited or nervous or angry or anything like that, I can end up feeling really ill so I try to stay as calm as I can.
If you don't have ME, I hope this has helped you to understand a little bit more about how it affects us. Obviously some people have it worse than others and it affects everyone in different ways. Happy ME awareness day for tomorrow!!
Showing posts with label emotions. Show all posts
Showing posts with label emotions. Show all posts
Saturday, 11 May 2013
Thursday, 7 March 2013
Worthlessness - Emotions we experience when chronically ill
Hey guys,
It's me again! Okay, let's be honest, who else would it be?! Oops, the posts are becoming further and further apart!
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?
What have we done to deserve gifts and treats?
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
It's me again! Okay, let's be honest, who else would it be?! Oops, the posts are becoming further and further apart!
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?
What have we done to deserve gifts and treats?
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, 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
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
Labels:
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chronic illness,
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EDS,
emotions,
fibro,
lupus,
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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!
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
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
Monday, 18 February 2013
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
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
Labels:
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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...
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...
Labels:
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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!
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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!*
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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.
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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!
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, 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
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!
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Chloe
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