Blue Hair, Tattoos and Self Expression (life with M.E.)

Alison/Tink; Hello our blogger arme!
A cute little blog discussion this time, albeit coming from a serious origin.

So many of us, quite rightly, feel like our bodies are out of control. As if they take charge and we are left rendered completely choice-less.

A lot of us can not choose what type of clothes we wear, how we have our hair- (if we can have hair at all), what jewellery or makeup we wear, and so on.

So much of human expression, and personality, is embodied in our clothes choices, hair styles, body language and physicality etc. Yet for a lot of us with M.E., these seemingly simple parts of life, are not in our hands.

Sometimes, it can be pretty important, sane making, and even empowering, to take some control back, when you can.

Jodi/Hbird:  That is so true. It can mean so much and help so much, even though they may seem like small and superficial things to do.

I said recently to a fellow ill person that has tattoos to help express the pain and powerlessness of illness that for me dyeing my hair recently was all I could do at that time, and my only alternative to just screaming at the top of my lungs in frustration for days and days until my voice was gone. That isn't exactly what I mean and feel I think but there is a big chunk of truth there too. It's very hard to put such strong feelings and pain into words, especially when you are so ill.

Alison/Tink: Isn't it just! I think many reading this will concur, sadly!

Here are a few examples of our personal experiences in this area.

I have two tattoos (so far). I had them done when I was well enough to cope with the physical fall out afterwards.

I have a 'friend' who is a tattooist who came to my bedroom and did them here, in a more controlled manner. I am such a girly girl so they are small and dainty so it wasn't too bad going. Both of them are more psychological ones, than aesthetic ones, and they literally help me every day. I would like two more, but will have to wait I think. Which is frustrating but probably for the best.

I know you have a love and affection for hair dye Jodi...

Jodi/Hbird; Oh I really do Tink, a big love!

I am too fickle for tattoos I think, what I love about body modification type things is the constant changing of them and always thinking up new things to do that will be fun. I worry I would change my mind about a tattoo design I picked now, years later. But maybe one day I'll feel confident that I know or want something for sure and for always as you have and take that tattoo plunge!

I'm so glad you get so much out of yours Alison, and that you were able to have them at home, that is so great.

For now, what I love is hair dye!

I have been too ill to do anything with my hair at all really for about a decade. A 15 second 'styling' job to get it out of my face is about it (combing optional!), plus 2 minute self haircuts occasionally! (I have to admit, usually I really enjoy doing those...it may well be the only thing I'd miss about being ill, if I were to suddenly become 100% healthy tomorrow. Cutting my own hair really quickly. The sound it makes as you quickly cut into a big hank of hair and chop it off, I love it! But I digress!)

Making my hair all pretty colours was my way of celebrating the fact that finally my health is slowly improving and that maybe soon my life will be about more than just basic survival...and have a bit more fun and life and colour in it.

Life has been monotone for so long.

Once I was finally well enough to do it, it became something I just had to do as soon as I could. It was both a celebration of being well enough to do such things again finally but also, a way of venting some of the pain and powerlessness of years of stupendously severe illness.

Being very ill means boring clothes and hair (and even music and room decorations and other things) and not being able to do so many things that make up who you are. This felt like a small way of reclaiming my non-ill personality a bit too. It made me feel more myself than I have in years. It is a small thing but to me, symbolic and powerful.

Alison/Tink; That's such a good point Jodi, that we often need to express, or simply be able to find, the person inside of us, the one who was born, not forged through illness. And then to blossom it too.

Jodi/Hbird; It doesn't help me cope with every day that much, it is all still really hard each day...but now and then when I see a glimpse of blue or another colour in my hair's reflection it makes me smile...as does planning which combinations of colours I'll do next.

Colourful hair dyes have come so far since I last did them over 10 years ago I'm so happy to see! The colour used to fade as soon as you looked at it. Even when hair was freshly dyed back then it was nowhere near as VIBRANT and deeply chromatic as any of the Special Effects brand dyes I use are. I LOVE the new dye technology! It is so weird to sometimes be annoyed the blue I have just put in isn't fading at all even after lots of washes (I really am liking them a lot more when they fade to pastels, you see).

I sometimes wish I could disappear it instead of just minimising it when I (occasionally) see people that aren't close family. I know it looks in way like attention seeking, and the idea I am doing that makes me self conscious and embarrassed, but actually it is all for me and I would be most happy if people didn't mention or comment on it to me. (Online comments are fine though and nobody needs to be careful at all about mentioning it to me or anything like that, but it is just different in person!)

Alison/Tink; And of course there are people who think you must be 'well' or 'better' to do things like these. Obviously you have to be able to do them, but it is always somewhat deflating to me how people fail to realise how ill one can be and do something like these. Does that make sense?

Jodi/Hbird; It does to me Tink!

Alison/Tink; I always worry that people will think I'm far healthier and able than I realistically am just because I have hair now, or a top that shows my figure differently. It's such a shame to gain these vital personification type things, yet worry about almost hiding them for fear of others wrong opinions.

Jodi/Hbird; Yes, I think people see you doing things not essential for survival and think 'Oh well then, you must have all the basic tasks of life well in hand if you can do extras!'

But at a certain point after years of struggle, sometimes self expression and doing a few things that are NOT to do with basic survival is what you have to do TO survive. To help you get through the difficult days. (When you are beyond a certain point of illness severity all the days are difficult ones, although the levels do vary.)

Also, often these small changes in our hair or wardrobe indicate only very, very small improvements in our ability to do things, and these improvements may well be gone by the time people get to see the changes in our appearance. So yes, appearances can be a quite misleading in this respect, I agree. It is a bit frustrating that a small but wonderful good thing can have this not-so-positive side as well.

If anyone is interested I'd recommend going colourful, in a big way or even only in a small section of hair, to anyone whose job allows it... and especially anyone that is ill or for other reasons just needs or wants a bit of fun and excessive colourfulness. More beautiful and unexpected colour in the world is always a good thing!

Happy dyeing and tattooing everyone!

Ps from Jodi on the issue of chemical sensitivities: I have significant issues with chemical sensitivities and I got around these by only bleaching and dyeing my hair starting about an inch from the roots - so none of the dyes or bleaches touch the scalp and the skin at all. The rest of my hair is natural brown coloured. I think it looks better not going all the way to the roots, personally. Plus doing it this way avoids all regrowth issues and means I only will have to re-bleach every 4 - 6 months or more. Pretty low maintenance, which is what I was after. If you wrap the hair in foil once bleach is applied the smell is very minimal. If I do it right I have no reaction to any of the products at all.

If anyone would like more dyeing tips and info on colour and brand choice you can check out my Special Effects dye review on Amazon, and also my gorgeous Fantastical hair colours I love board on Pinterest.

Also, if you are thinking about a tattoo you may want to read this article on avoiding toxic dyes used by some tattooists or this article. Researching all the dyes and things you will have tattooed onto your skin or put on your hair is up to you and essential!

Alison/Tink; I asked my tattooist what was in the dye, she had no idea! Said most long term tattoo artists don't! I'm so tempted to drop a joke comparison about ignorant doctors but I'll leave this doctor free, for our sanity :-)

Jodi/Hbird; Pps. I also just wanted to say, yes, for many very ill people doing any dyeing and tattooing will just not be possible at this time. This post should in no way be taken to mean we think that everyone with M.E. will have these options. We know they do not, and indeed we have only managed them in particular ways/recently/with difficulty, ourselves. We wish everyone reading this blog the improvement in your health in the future that will let you do some of these things maybe, or any of the other things you are dying to do!

Alison/Tink; You beat me to it!! I was going to add exactly that point. Yes, you have to be able to do these things, and/or cope with the potential fallout, not many severe M.E.ites have this option. But if you possibly can, self expression of any sort, can be pretty important. Hence this post. But we both absolutely know, from medical knowledge and experience, this is often not an option.

 

 

 
Back to point, I love this picture of you Jodi, one of my favourites actually! I think your blue hair expresses as much as your smile here. Thank you so much for including it!!

We would love to hear about your various ways of self expression, either below on the easy comment stream, or via email to my usual address contactalisonLouisebell@gmail.com

We love hearing from you.

That's all for this entry folks,

We hope you enjoyed the visit!

Best wishes, Much love and Blessings

The Tinkerbelle and Hummingbird M.E. Blog x x

©TheTinkerbelle+HummingbirdM.E.Blog 

 

 

Self worth with M.E, Blog discussion 2 (Inner me VS M.E.)

Welcome to our Official Blog Discussion Number 2 our Beautiful Blogger Arme!! 

Most human beings, at some point in their lives will struggle with their personal view of their self worth. These people have 'regular' lives, and 'regular' problems (I use the term 'regular' as I believe 'normal' is obsolete, 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 who are too ill to go visit a friend in need, or feel adequately able to congratulate families achievements, or to hold down an ordinary job. 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.

Being able to see how much genuine self worth you all hold, is something we feel passionately about, and so here we are discussing it.

Personally, I have struggled with this for my whole life. Yet hold such double standards for others, who I entirely believe are just, worthy, valuable beauties, exactly as they are.

I did an interview recently with a charity that I support that is about self worth. The interview was about the what the essence of True Beauty is. There is quite a lot from it that I could repeat here. Because all of your souls, all of your deepest selves, are truly beautiful. I sincerely mean that. 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 most worthy. That includes all of you, no exceptions.

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

I know you too feel strongly about this Jodi, what would you say to a 'healthy' person to explain the often uselessness we can understandably feel?

Jodi/Hbird; Thanks Tink, this is a really important topic.

Okay...I would ask that 'healthy' people try to understand a little bit when talking to someone that has had to give up work or study due to illness, that this is extremely hard to deal with. Many people would like a few more week or months off from work each year 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. Financially, socially and emotionally.

Alison/Tink; Right, especially on top of trying to deal with a devastating illness.

People have many a time said to of 'You're so lucky, I wish I could just lay in bed and watch films all day.' As you say, hearing such can feel so disheartening.

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

When I set up this blog, before we put up any posts, I showed my dad. I wanted to show him something that in a tiny way, may make him somewhat proud.

This made him cry. Because to him, me living another day makes him proud he says. Yet to me, I have never succeeded in anything that could make anyone proud.

Self opinions are so super biased. It is amazing the different standards we hold for ourselves compared with those we hold of others.

Jodi/Hbird; So much of our self worth is in what we do. In our jobs, in our role in the home as meal-makers and as people who pull their own weight at least with household tasks, 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.

Alison/Tink;  Definitely. 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.

You know when a child says their first words, adults almost immediately ask 'What do you want to be when you grow up?' I always only ever wanted to be a mother and a wife. Thanks to this incredible disease, I can't be a mother, and I almost certainly will never get to be a wife. 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 boy is it a mind bender., and such a battle to realise!!

The reestablishing of perspectives on a various spectrum of subjects is forced upon us in many sad and marvelous ways due to this multifaceted illness. Self worth being one of the most important., and difficult ones.

Jodi/Hbird; But 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.

The first 6 months or so after I had left University due to M.E. were some of the hardest months I have ever had, and that is really saying something with how ill I was while I was studying and the 4 or 5 day blackouts each week and so on, and how ill I became right after this as my overexertion from studying too long really came back to hit me where it hurts and I entered my worst 'black years' of very severe M.E.

I had such a hard time dealing with not having a focus in my life and with feeling like I wasn't pulling my weight somehow, because I wasn't working or studying. I felt adrift and as if I was just in limbo, with nothing to aim for and to strive towards and look forward to. Work and study give such structure to our lives.

It took me many months to really understand at a deep level that I 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 who I really was and what I really valued, sort of from scratch, now I didn't have those easy and somewhat superficial definitions based on my work and study.

It was a really valuable experience this redefining and more deeply defining of self and one I think we all have to go through to some extent to really grow up. It was a valuable lesson to learn, but oh did it HURT 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.

For anyone going through such a battle now, I would like to send them a big 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. You might have a big 'dip' 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. Mine certainly have, although every day is still hard. Not being able to support my friends and family when they need me is really hard. Not being able to care for myself and do my own housework is hard.

Having such utter fear for my future is hard. The fact I have been too ill to travel for over 6 years now gets harder as the years go on...

Alison/Tink; Hard yet such an understandable struggle Jodi, but that doesn't make it easier to deal with tho 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 realizing that life is made up of little things." ? Frank A. Clark

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

I heard this quote recently, and found it so pertinent to the often lonely, sadness of feeling 'less than' --"I wish I could show you when you are lonely or in the darkness, the astonishing light of your own being." -Hafiz.

Jodi/Hbird; I completely agree Tink, just keeping going each day when the level of suffering is so enormous and there is often so little support, shows an amazing level of strength and that is something to be proud of, it really is.

Alison/Tink; Absolutely.

Jodi/Hbird; I'm also so often blown away by how much kindness my fellow M.E. patients have to give to others. They can be suffering so extremely themselves, yet still have the thought to cheer someone else up with a kind comment or some helpful advice. The human spirit is amazing and human beings are so much tougher and more resilient than we are usually told they are.

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

That these same people are so often accused of being weak or having a huge deficiency of character (due to ignorance that 'chronic fatigue' is in fact not remotely the same thing as M.E., and that this view is common only because of the involvement of financial vested interest groups in science), boils my blood, as it is just so grossly unfair!

Alison/Tink; With you Jodi being one!

And yes, I Couldn't agree more. These very people are so often unheard. Yet are truly heroic! To be so continually judged, and to such a degree, 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!

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

Jodi/Hbird; 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. Having your character and amount of moral fibre disparaged 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.

Alison/Tink; I remember a lunchtime news programme aired here a few years ago now who had one time had a section they called M.E./Cfs (I won't go into my opinion on their lack of knowledge between the two!) Viewers could text or email in and their comments would be shown along the bottom of the screen. One 'Gentleman' wrote- 'The cure for M.E. is to stop giving them benefits so they have to get off their lazy backsides and work like the rest of us.' Appalling right? What I would give to be able to go out into the world and work, to put to use my passion and determination through work that I have no place to use now. I am not lazy or weak or selfish like he may believe. And nor are most M.E. sufferers who from my experience, like you so rightly say Jodi, are some of the kindest people you could meet. But with comments like his, it is no wonder we can feel judged and worthless!

I also remember when my G.P. told my father that she was 'surprised that I was not fighting my illness'. My heart just sank when he told me. And I felt mortified knowing my family would know! My nana cried when she was told. All because I can not open my curtains without consequently losing essential abilities such as getting to my bathroom or grabbing my food from the fridge outside of my room . If I did not fight, I would literally not be here. It is opinions such as these, and as you accurately say Jodi the whole Cfs propaganda, that have the potential to destroy what little belief in ourselves that we have!

The need to rest with this illness is so often misjudged as lazyness, passive or defeatism. But it is a sheer necessity, and an active action too! Resting when you have M.E. is one of the most essential, proactive 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 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. Resting is beyond imperative and yet as I say, something some people judge as lazyness or a personality trait!

Please none of you 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, because if you have even a modicum of self worth (although preferably more), 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 new things at you to 'deal' with in life.

Jodi/Hbird; Over the years I have come up with some 'tricks' to help myself make sure that I am analysing problematic situations and comments correctly and being fair to myself.

1. Imagine that the nasty and ignorant comment that someone has said to you (etc.), was said to one of your fellow M.E. patients. How do you feel about it now?

(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. 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. 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 and being barraged by crap on all sides, so we can stay mentally healthy!)

 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, untainted by propaganda and misinformation.)

I had one more I am pretty sure but my brain has gone blank!

Alison/Tink; Such a great way of trying to deal with understandably hurt feelings is great and admirable Jodi.

Feeling so continually judged and assessed is beyond draining on already depleted reserves. 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.

You know during this very blog discussion, there has been yet another bereavement in my family. And yet again I have been reminded of the very thing I find hardest about M.E. This being the powerlessness it brings. All I wanted to do was drive right down to the grieving lady, scoop her in my arms, and hold her sobbing body until she fell to sleep. Yet I was once again, alone in my bedroom. Completely unable to do anything. And again it brought the notion of 'why am I here?'

Now I don't at all mean that to sound overlooking dramatic. But you know what I mean.

Yet I would say to someone in my position that they are so important, and your life is anything but inconsequential. Being you, exactly you, will bring the person in question strength. 

It can be so terribly hard to have coping strategies. Regular people can pound it out in a jogging session, eat ice-cream, call a friend and talk it out. Yet so many of us are left to analyze things insideour heads., which is not easy to do when feeling hurt or judged or suffering.

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.

If you or anyone you know are in this position, please contact us. You are not alone!

So any last words of wisdom Jodi?

Jodi/Hbird; 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 I guess. Talk to people with the same illness and that really get the issues if you can. Try to be your own best friend too and spend some time thinking about the good qualities you do have.

Alison/Tink; Brilliantly said Jodi. As the saying goes 'You're never alone once you've learnt to count on yourself'. Being your own friend, your own cheerleader is so vital to shaking off those false voices in your head saying you aren't enough. 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, meaningful, brilliant and a hundred other superlatives that my brain can not cunjour right now!

We believe in you!!

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 stream below. 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

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We really value your help with this, our beautiful Blogger Arme.

So for now, we hope that you have found reading this discuss worthwhile, and truly hope that you know that we value you, admire you, love you, and think that you are beautiful.

You are worthy and You matter.

Best wishes, Much love and Blessings

The Tinkerbelle and Hummingbird M.E. Blog

x x

©TheTinkerbelle+HummingbirdM.E.Blog