Tuesday, 28 August 2012


Hey guys

So many of us M.E. sufferers, especially those of us who are house bound, often face intense isolation.

Too much human contact can cause dramatic increases in our symptoms and we feel awful afterwards.

So many turn to, and rely on, pets for companionship and friendship.

They give us purpose, responsibility, a reason for getting up in the morning and a reason to look to the future! They make us smile and cheer us up! We can stroke them and cuddle them...

I am very lucky to have a cat, some fish, 7 guinea pigs and 2 rabbits (my mum and sister (also known as sexy Bexy!) look after most of them although I do feed my cat sometimes).

I know of many people with various severe illnesses who rely on their pets almost more than they rely on human contact.

For many M.E. sufferers, our pets play an important role in keeping us going and getting us through the days.

My cat (pictured below) isnt particularly friendly because she is shy and timid. She doesn't often sleep on my bed and prefers to sleep in unusual places such as in the middle of the landing or on a piece of paper! I do wish that she would snuggle up with me and keep me company a bit more often... (I would love loads of cats! They are my favourite!)

Some spoonies' cats have kept them company for so many thousands of hours that they would otherwise have spent completely alone. Being alone but having a cat or two for company is so much nicer than just being completely alone. I can see how it really makes a difference to them and lifts their mood!

I can see how having a cat purring and sleeping next to you, can help if all you can do is lay in bed or if you are in a lot of pain. It's relaxing and soothing.

M.E. makes you so isolated, because even a little bit of time spent in the company of another person and having simple conversation can be too much for very severe sufferers to cope with without relapse. Severe M.E. means spending almost all of your time with little human company or contact.

Luckily I am not a severe ME sufferer (at the moment) and I have been getting better.

When i cant sleep at night, i go downstairs to see my cat. I sit with her and talk to her (yes, i am a mad cat lady!), i play with her with a piece of string or a toy. My cat make me laugh out loud at least once a day and often a lot more. They are such funny little things and always up to something new!

She is so cute and funny when she gets up to mischief! She gets herself into a pickle quite often and she's always being naughty and eating things she shouldn't! Once she ate my brothers birthday cake, not the whole thing but she took a chunk out of it during the night! Even though it was wrapped up and secure, she got to it! She has also been known to eat a whole scone or slice of fruit cake when we are not watching!

I could go on and on with dozens of funny stories about her but I'll spare you that because I realise they may only be funny to me and my family! A lot of them are you-had-to-be-there moments.

Daily laughs for someone with M.E.are such a special thing, and so important. When we are feeling so lonely and ill and in so much pain, laughing can help us so much! With all the grim realities we face who needs to laugh more than us?!

However I do appreciate that for spoonies who are house bound, even having a quiet pet such as a cat or rabbit can be too much. And that they could not cope with their movement or noise.

Having a pet and not being well enough to see it much can also be terrible.

I think cats are probably the best choice because dogs can bark loudly sometimes and they need a lot of care and walks.

Dogs are difficult because they need walking -something impossible for most M.E. patients. Cats are easier than dogs and there are also birds and mice, rabbits and guinea pigs and rats to consider, depending on your own illness level and which animals you like and dislike. (Rats aren't for everyone and they certainly wouldn't be my first choice!)

A goldfish in a bowl could be good. You could have it by your bed or where you can see it easily. I'm not sure about tropical fish tanks as they can be noisy and have bright lights.

Pets have their downsides too.
My cat will sometimes decide to go outside so I'll get up and let her out. Then 30 seconds later (when I've just sat back down) she'll want to come In again. Then she'll want to go back out. In and out. In and out. Goodness knows how long this goes on sometimes! We don't have a cat flap you see! Thank goodness I don't live on my own and my mum can take turns letting her in and out!

Or she'll decide to meow, claw, scratch and howl at 3am at me until I get up. These sorts of things can be maddening and so annoying!

Also, i'd go for a short-haired cat because my cat is semi-long haired and there is also cat hair over EVERYTHING, all the time!

Obviously I get far more from my pets (mainly my cat cos I don't have to go out in the garden to see her!) than I lose of course, and mostly she is well behaved!

There are also financial costs too but I don't know much about them so I won't go into depth! I am aware that a lot of spoonies can't work and don't get that much money from DLA or other benefits so it's important not to get an animal that is too expensive.

Also, I hate the way people unintentionally look at me nowadays. They look at me with a combination of pity, unrealized judgement, and without looking at me as a person if that makes sense. They judge me on my clothes and greasy hair. I am a 15 year old girl, they expect me to have spent hours getting ready!

Pets don't see greasy hair or a person lying down. To have a pet who gives you uncomplicated love, love without knowing your life-- just knowing 'you', can be invaluable.

Because I'm ill, people that I don't see often, worry about what they are saying to me. They are careful not to talk about school and things like that incase it upsets me. And if I'm having a bad day, usually people are slightly kinder to me but I like that fact that my cat will ask me for food whenever she likes. She doesn't care how I feel and she doesn't treat me differently! She doesn't care what I'm wearing or whether I've showered!

Sometimes I feel that she is the only one who is there to give me support and love. The only one that doesnt judge or question me!

Pets can also be great confidants. Personally, I know I hide so much of the realities of having M.E from almost everyone that I know. Talking to a pet, having someone to actually be fully truthful with, even more honest than you may be with yourself, can be vitally important. Yes, I talk to my cat. A LOT.

Pets are fab. Their individual little personalities are so interesting too. It is great to have your pets from babies and watch their personalities grow and change over time!

Pets really are just great!

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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Saturday, 18 August 2012


Hey guys

Now, I have Emetophobia. Emetophobia is basically just a big-long-fancy word that means "phobia of being sick,"

Now, I am SO SO scared of being sick, of vomit and of other people near me being sick. I actually cant describe to you how scared I am!

I think about it everyday and I dread winter when everyone is sick, and there are stomach bugs going around.

I wash my hands constantly during the day and go through bottles and bottles of antibacterial hand gel.

I basically do everything I can to prevent me from getting ill.

I have anxiety anyway.

And I have panic attacks about being sick.

If someone in my family/house is being sick or has been sick, I don't know what to do! I'll shut myself away, I just can not be near them! I panic, have numerous panic attacks, start shaking. And then because I am so worried about being sick, I'll start to feel sick from anxiety. Then I'll panic even more and it will just go round and round in circles.

I just wanted to share this with you. Let me know if you have ever had a similar experience, hopefully I'll do some more posts on this soon!

Saturday, 11 August 2012


Hey guys

I'm so happy! Hippy hoppy happy! I went to the beach yesterday! Yay! Omg I am so so pleased! I didn't think I would be able to go to the beach this summer but I did and I can't tell you how positive I feel now!

When I woke up yesterday, I felt awful, I thought I was gonna pass out and I didn't feel good at all. All morning I felt horrid, but I got breakfast, got dressed, did my make up and got my things together :)

My nan and grandad came to pick me up at 12:30, and we drove to the seaside which is about an hour away from where we live, maybe a bit more. It felt so good to be in the car, and going out to somewhere other than an appointment!

We got McDonalds and ate it on the beach, then we sat on the beach for a couple of hours, and drove home again!

It was a really lovely, sunny day but not too hot, there was still a nice sea breeze. I put two lots of sun lotion on and still got tan lines and a little bit burnt!

I just feel so pleased and proud of myself that I managed to do it! This is a huge achievement!

Also, today I ordered the lovely glittery American Apparel Galaxy nail varnish! I can't wait for it to come!

Here is a picture I took of the beach yesterday:

Thursday, 2 August 2012

Imagine ME

Imagine ME

Imagine having a really bad hangover, a throbbing headache, then having to run a marathon, then coming down with the worst flu in the world, all at the same time.

On top of that, imagine someone is prodding needles into you constantly, into every single part of your body, nowhere pain-free, untouched.

Imagine someone spinning you around on a chair so you are extremely dizzy and nauseous and shining a bright torch in your eye so that light hurts. You just want to turn away and stop it but you can't.

Pain erupts from every place on your body like being wrapped in a blanket of nails.

Then also, imagine everyone has a speaker phone, so even a whisper seems like shouting.

You just want everyone to shut up, to be quiet and to leave you alone, somewhere silent and alone.

Imagine spraining every single muscle in your body (even ones you didnt know you had!) and having to carry someone equivalent to your own weight who is clinging on to your legs all the time. And they won't let go, no matter how much you beg and plead.

Imagine having muscle spasms almost constantly uncontrollably which feels like torture as its so painful and totally exhausting too.

It's the last thing you need.

Imagine someone speaking a foreign unknown language to you, really fast and you have to concentrate REALLY hard to try work out what they're saying, then you forget it.

Imagine having to sit in an ice bath for a long time, freezing cold, all the time.

Then imagine sitting in a sauna for hours and hours on end.

Imagine switching between the two, every few minutes. One minute cold, the next, hot.

If you think you can't get any more tired, imagine having panic attacks on top of that, & really bad anxiety which literally drains any energy you've got left.

Then, imagine staying like this, not knowing if/when you're going to get better, having to deal with this HUGE change of lifestyle.

Imagine never having a break, never getting a day off. You are like this for 24 hours a day. 7 days a week.

Imagine how tough and heartbreaking this illness can be.

How difficult and hard.

Imagine a lot of your support mechanisms breaking down, some friends move on.

Imagine not being able to go to work, school, or out with your friends.

Imagine having to deal with this on a day to day basis, not knowing how you are even going to be hour by hour.

And worse of all, imagine being told 'ME isn't real' and 'it's all in your head'. Even by medical processionals.

This is what we need to change. I can't control my ME, the causes, the pain, the suffering, the cure, but what everyone together CAN change is its understanding.

I hope you can understand.

There are people out there suffering. Nobody deserves to feel like this. ME patients were healthy, lively, fun, outgoing, adventurous, clever, the list goes on. They were hardworking, with great jobs, grades and ambitions.

Then they got struck down by this illness.

Some of these people are my friends and they don't deserve this.

Nobody does.