Saturday, 29 December 2012

A worldwide bond

Something I have learnt since being ill is that people from around the world, from other countries, aren't all that different to me and to British people.

Reading blogs and tweets, they could be written by anyone, from anywhere in the world. And it's strange how I have come to feel closer and more in-tune with people who live halfway around the works, than people from my town.

I never really thought that other countries, such as America and Australia were all that different. But I guess, now I know that we are all really the same. We have different traditions, different slang, different weather and things like that.

But when it comes down to it, those aren't the important things. The things that are most important are that we all want to be happy, we all get upset, scared and angry by the sane things.

A lot of people that I talk to, and who I consider my friends, from around the world, have the same DVDs as me, same nail varnishes and things like that. And I think it's just so fascinating that we talk about that DVD, or nail varnish, compare opinions, without even having to be in the same room, or country.

All of the people I talk to on twitter, know how I feel, because they are sick with ME, fibro, CFS, CFIDS, lupus or EDS too. Some might live thousands of miles away but there are still things that connect us together.

I never thought that I'd feel so close, or have so much in common to someone who lives in another country, who I have never met, and who is 10 or 20 years older than me, but I do.

The initial bond that we have, is the ME, but afterwards, I have found that we have other things in common too. We watch the same Youtubers, we are interested in fashion/beauty, like the same music, watch the same TV shows.

That is something I have learnt in 2012.

P.S. Hope you all had a fab Christmas
Saturday, 15 December 2012

There's nothing beautiful about being sick

There's nothing beautiful about being ill.

About pills. Doctors. Hospitals. Scans. Test. Constant pain and feeling ill.

So, why, when people think of a teenager or child being seriously ill, do they imagine bald heads, brave smiles, swimming with dolphins and trips to Disneyland.

Not wanting to sound bitter or selfish but an image has been built up, so that everyone thinks that it's like that. When in fact it's not. I'm not. And I feel like a failure for not living up to the expectations of the sick teen.

In magazines, you read about these kids who are brave, inspirational and who stay positive and smiling through out everything but I'm just not that. I cry. I moan that it's not fair. I'm not brave. I hate hospitals. I get really scared. I'm not strong. I haven't met any celebs. I get grumpy. I don't have cancer. I haven't done anything amazing or spectacular. I haven't been on a holiday around the world, I'm not dying. I'm not positive. I give up, all the time. I don't look ill. I'm not skinny. I haven't been inspiring to anyone.

There is nothing beautiful about me, or this illness(es) that I have.

I will never be a poster girl for young people with illnesses.
Wednesday, 5 December 2012

Experiencing new symptoms: just some of the new symptoms I have been experiencing recently

Experiencing new symptoms

My eyes hurt. I get an 'onion sensation'. You know when you are cutting up onions and your eyes feel stingy and watery and sore, mine have started to do that randomly, whenever they feel like it. It doesn't happen when I'm watching TV or anything like that, and I can't seen to find a pattern to it.

Brain fog has been pretty bad and I have struggled to read recently so have given up for the time being. I can't concentrate or understand anything.

When people talk to me, it takes me a while to figure out a.) if they are speaking English b.) what they are saying c.) what those words mean and d.) what I am supposed to say back to them. Now, it isn't always this hard to understand what people are saying, now, don't get me wrong, usually I am okay but recently this has been happening more and more often. Words just sound like noises and I'm not sure what each noise is meant to mean.!?

Clothes hurt. Pajama trousers, vest tops, plain cotton long sleeve tops; they hurt. My skin is so sore and every inch of me feels bruised. Loose clothing hurts and it's so bloomin' annoying!

Cold sensation in my head. The blood in my head sometimes feels ice cold and I can feel it moving around and going down into my neck. Now, I'm aware I sound really crazy but that is truly a sensation that I get!

If anyone has experienced any of these symptoms and has found something that helps, please let me know!
Saturday, 1 December 2012

Maybe, just maybe, this time, things will be okay. How long does it take for a spoonie to realise they are chronically ill??

How long exactly, does it take to recognize and realise that you are sick? And I mean truly, life-altering sick, not just getting a cold every now and again?

To be honest with you, I'm not sure a lot of people EVER realise. I know some ladies who have been sick for 30-40 years and they still struggle to understand the consequences of being a spoonie.

Somehow I keep thinking that tomorrow I will wake up and be well again.

Sometimes I think, my brain tricks itself into convincing me that I will be fine after a big event or outing. For instance, I blogged back in August (post titled 'Christmas in August') about last Christmas, when I convinced myself that because it was Christmas, I'd be fine. I'm trying not to do the same this year but I do find it hard to strike the right balance between thinking positive and being completely unrealistic and having that head of mine, stuck in the clouds!

I know that I am going to get payback after Christmas. I know I am going to feel ill. But a lot of people I know, think that I am being negative by saying that, even though it is the truth!

Sometimes, I know I am going to get sick after an event but its all so vague and abstract until the time comes when I am stuck in bed. Somehow, I keep convincing myself and thinking, in the dark recesses of my mind, that surely I exaggerate my illness (I have been told by people that I do and part of me wonders if they are right) and that this time, maybe, just maybe things will be okay.

They never are, but a girl can dream, right?

Note: sorry for such a rambly post. I just wrote what was in my head!