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.
Saturday, 15 December 2012
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!
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!
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!
Thursday, 29 November 2012
Baby guinea pigs!
The baby pigs!
Hope you can see them as it's not a very good picture but the baby pigs arrived at about 5pm last night and they are so super tiny!
Hope you can see them as it's not a very good picture but the baby pigs arrived at about 5pm last night and they are so super tiny!
Labels:
Guinea pigs,
my life,
pets,
Update
Thursday, 22 November 2012
Is there light at the end of the tunnel??
I don't know about you, but before I got sick with ME, I didn't get ill very often.
Yes, I got the occasional cold and stomach bug in the winter but other than that, I was usually fine!
However, when I did get ill, the one thing that got me through, was the fact that in a couple of days I would be fine!
Kids heal quickly and although I was probably feeling pretty rough at the time, the thought that in 24 hours, my "24 hour vomiting bug" would practically be gone, was enough to get me through and keep me sane.
But when you are a spoonie, you don't know when or even IF you are going to get better. Sometimes it feels as if there is no light at the end of the tunnel. And even if there is a light, it may be very dim at the moment and could take years and years to reach.
Not knowing when or if you are going to get better is really hard. Maybe if we all knew how long this was going to last or when they would find a cure, maybe then it would give us something to look forward to or work towards. But in the mean time, we all have this imaginary light. Well, I do, anyway.
I am ploughing through the tunnel, not knowing how long or short it is. We have to work towards the light, towards getting better even though it may not happen.
It's hard to be optimistic all of the time, especially since you can get dragged backwards through the tunnel but to all you spoonies reading this, I promise you will get there.
That is a slightly hypercritical thing for me to say because most of the time, I feel as though the tunnel is never ending. It's very hard not to give up.
But I guess we all just have to try.
Yes, I got the occasional cold and stomach bug in the winter but other than that, I was usually fine!
However, when I did get ill, the one thing that got me through, was the fact that in a couple of days I would be fine!
Kids heal quickly and although I was probably feeling pretty rough at the time, the thought that in 24 hours, my "24 hour vomiting bug" would practically be gone, was enough to get me through and keep me sane.
But when you are a spoonie, you don't know when or even IF you are going to get better. Sometimes it feels as if there is no light at the end of the tunnel. And even if there is a light, it may be very dim at the moment and could take years and years to reach.
Not knowing when or if you are going to get better is really hard. Maybe if we all knew how long this was going to last or when they would find a cure, maybe then it would give us something to look forward to or work towards. But in the mean time, we all have this imaginary light. Well, I do, anyway.
I am ploughing through the tunnel, not knowing how long or short it is. We have to work towards the light, towards getting better even though it may not happen.
It's hard to be optimistic all of the time, especially since you can get dragged backwards through the tunnel but to all you spoonies reading this, I promise you will get there.
That is a slightly hypercritical thing for me to say because most of the time, I feel as though the tunnel is never ending. It's very hard not to give up.
But I guess we all just have to try.
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