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!

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
"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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  1. What an amazing post Chloe, thankyou so much for writing and sharing. Lots of wisdom :-) Sarah

    1. Thank you so much for your lovely comment! It means so much! I didn't think anyone read my blog! Lol hope you are well xxx

  2. There is so much good stuff in this post! I didn't get to the end though. I'd love to see you tackle these issues one by one in shorter posts!

    1. Okay, thank you so much for your comment! I will bare that in mind, I am aware that, that post was very long (longer than I would normally write!) :D hope you are well xxx

  3. Hi Chloe!

    Oh dear, where to start? You are one smart and very insightful lady, and I do mean lady, despite your young age. I get so very upset when I see so many young "kids" out there sick with ME because I've had the DD since 1975 (though not diagnosed for about 15 years) and cannot believe that in all this time the lack of progress that's been made. I don't mean to depress you - quite the contrary. One thing that IS known now is the absolute necessity to rest, to give your body the energy to recover.

    I love that you realize so much about yourself and are able and willing to verbalize it all. I'm glad that you've found a way to release the pent up feelings of frustration and self-esteem and so much more. And you are absolutely right: we ARE hardest on ourselves and would never treat or criticize anyone the way we criticize ourselves. I'm glad you have this chance to release all your emotions and frustrations as well as to make friends, to keep in touch with the world and to get a feeling of accomplishment. (I just started a blog about it all six months ago and have the same feeling, so understand this too!)

    Good job, Chloe, on the thoughts, the writing and the fighting, as well as the "resting" and the healing! I'm so very glad I saw the retweet (is THAT a word? LOL!)to your blog just a little while ago.
    Irene xx

    1. Hi Irene, thank you so much for your lovely comment! It honestly means so much, I don't know what to say! Thank you! Hope you are well!

  4. Hi,
    Very well put together blog.
    Can I just ask what you mean by the chronic fatigue comment? It seems you seem to think that someone with chronic fatigue just has a weak character? I can tell you, that I have been told I have CFS and have certainly NOT got a weak character. I am a hard working young professional who got too ill to work. I wish people would stop calling "chronic fatigue syndrome" while people who are very I'll are getting diagnosed with it. You'll be upsetting actual people, regardless of what some science group says, reality is it is a term used by GPs.


    1. Hi Becky, thank you so much for your comment. I am aware that I may have worded some of it wrongly, so I have edited the post a little. I do not think that people with CFS are weak in character at all! I meant the opposite but I'm sorry that it came across that way! Hope you are well x

  5. Thank you for your reply, I'm happy you didn't mean how it came across : ) as I enjoyed reading your post!!

    Take care,