Grief sounds like a strange word to connect to chronic illness. At least, it does to healthy people. To chronically ill people it makes perfect sense.
As far as I can see there are three main factors to why chronic illness (& pain) sucks:
1. Pain. Which leads to...
2. Limited mobility/lifestyle changes. Which tends to encourage...
3. A change in other people's attitudes towards you.
Pain is difficult to deal with. You can get by when you twist an ankle, break a bone, or suffer some other acute injury, but when you have constant pain, day in, day out for weeks - months - years - it gets harder and harder to deal with. It sucks the life force out of you. Everything becomes harder. It leads to depression. Depression makes it worse again, because you lose the motivation to take medication and do physio and exercise.
People's attitudes are important, but you soon learn who are your real friends and who aren't worth bothering. It's still a challenge, though.
Right now, I am finding the most difficult thing point number 2. I am 17. I used to go on camps with my girlguides, and I loved it. But now I know that a night in a tent would screw me up so badly I'd barely be able to walk. We used to do hikes together for charity - can you believe I used to walk 13 miles through the Cotswolds? No, I can't either, but I have certificates to prove it. I actually used to be the fittest of my girlguides. I used to power ahead. I went on a walking holiday in the Aeolian Islands just three years ago. I've climbed volcanoes.
Now, walking to school in the morning can leave me in tears. Writing a few sentences can make me cry. Hell, even sitting still I can be in too much pain to focus on my work.
I'm 17. All my friends are turning 18 and throwing parties. Tonight is my oldest friend's 18th. I'm not there right now, because my hips scream at me for walking from the study to the kitchen, let alone across town.
My body sucks. It really, truly does.
Now, I'm going to get drunk.
And when my doctor tells me to have a more positive outlook, I'll bite him.
28/02/2009
24/02/2009
Psh, MEN!
I have issues (there's that word again!) with GENDER IDENTITIES. Mark the phrase for me, mark it please.
I could spend a long time exploring the Why, going into how my father was the primary parent for me, working from home whilst my mother ran her business, talking about my mother's love of sport and my father's hatred of it, but I won't. I'll simply list the main factors: I'm female, and always identify better with men. When I imagine myself in the future I see a man. I spent two-and-a-half years with another girl. I have an amazing male friend who is very effeminate.
So, what does that make me? Gay? Transgendered? Probably.
But what I don't understand is why... Why must we have categories? One is either male, female or a freak.
Can't we all just be who we are...? Lizzie can be as effeminate as he likes, but that's just Lizzie. I can wear a three-piece suit and wingtip shoes, and that's just me.
A naive and teenage view, I agree. But I firmly believed that it should be that way. There should be no 'gender identity', there should just be people, being who they are, and loving who they love. I knew it was impossible, of course, because people are conditioned and that conditioning will never stop, it is self-perpetuating.
However, in light of a recent (messy) relationship with a boy, I'm doubting myself.
This boy, we'll call him Alex, because that's his name and he doesn't know I have this blog, cannot accept me as a person. I am... A Girl. Yes, Yes, he's a teenage boy, his mind is ruled by testosterone, and so on. He wants to get close to me, he wants to get under my shirt, into my pants, he wants to see what I have got. When he realises that - ain't gonna happen - he withdraws, and 'sleeps', gets all miserable. After these episodes, he avoids me, doesn't speak to me much, and then gets his claws out. When I make an innocent remark he retorts in a very worked up manner. Then, a little while later he apologises, says he just needed a let-out. The cycle starts over.
I feel used - This is no way to treat a friend. I am not his scratching post, or his whore. I am his friend. I feel like I am being treated like an object.
So, yes. There is a fundamental difference between girls and boys (not just the obvious!), although I am not sure what it is. But when they clash, something goes horribly, horribly wrong... And I don't think that is down to conditioning.
I could spend a long time exploring the Why, going into how my father was the primary parent for me, working from home whilst my mother ran her business, talking about my mother's love of sport and my father's hatred of it, but I won't. I'll simply list the main factors: I'm female, and always identify better with men. When I imagine myself in the future I see a man. I spent two-and-a-half years with another girl. I have an amazing male friend who is very effeminate.
So, what does that make me? Gay? Transgendered? Probably.
But what I don't understand is why... Why must we have categories? One is either male, female or a freak.
Can't we all just be who we are...? Lizzie can be as effeminate as he likes, but that's just Lizzie. I can wear a three-piece suit and wingtip shoes, and that's just me.
A naive and teenage view, I agree. But I firmly believed that it should be that way. There should be no 'gender identity', there should just be people, being who they are, and loving who they love. I knew it was impossible, of course, because people are conditioned and that conditioning will never stop, it is self-perpetuating.
However, in light of a recent (messy) relationship with a boy, I'm doubting myself.
This boy, we'll call him Alex, because that's his name and he doesn't know I have this blog, cannot accept me as a person. I am... A Girl. Yes, Yes, he's a teenage boy, his mind is ruled by testosterone, and so on. He wants to get close to me, he wants to get under my shirt, into my pants, he wants to see what I have got. When he realises that - ain't gonna happen - he withdraws, and 'sleeps', gets all miserable. After these episodes, he avoids me, doesn't speak to me much, and then gets his claws out. When I make an innocent remark he retorts in a very worked up manner. Then, a little while later he apologises, says he just needed a let-out. The cycle starts over.
I feel used - This is no way to treat a friend. I am not his scratching post, or his whore. I am his friend. I feel like I am being treated like an object.
So, yes. There is a fundamental difference between girls and boys (not just the obvious!), although I am not sure what it is. But when they clash, something goes horribly, horribly wrong... And I don't think that is down to conditioning.
23/02/2009
What is this?
I've had joint issues for as long as I can remember.
I say joint 'issues', because I use the word 'issues' to mean almost anything - last year in maths I had polynomial issues, I have rejection issues, I have drug issues (not the ones you think!)
I also say 'issues', because I have no diagnosis.
I first visited my GP on the subject in 2007. He thought there was nothing wrong, but ordered a blood test. The results showed positive anti-nuclear antibodies (ANA), and I was referred to a rheumatologist.
The rheumatologist prescribed Naproxen, which made me sick, and did not help with the pain.
Then, I was prescribed Meloxicam/Mobic, which didn't make me ill, but also didn't help with the pain.
A visit to my GP resulted in a repeat prescription for codeine, and that's the way my medication has remained since.
My rheumatologist initially gave me a diagnosis of Juvenile Idiopathic Arthritis, but after the NSAIDs did nothing for me, and my bloodwork failed to show elevated C-reactive protein or SED rate (inflammatory markers) he retracted that diagnosis, and washed his hands of me.
The problem I now face is that the pain is getting much, much worse. It is beginning to limit my mobility and ability.
I do not go a day without pain.
The codeine does not take the pain away, it barely takes the edge off, and the side effects are too bad for me to take much of it - constipation, nausea, drowsiness, rebound headache.
So, here I am. I deal. I realise that because my bloodwork shows nothing of consequence, my rheumatologist is a first-class dick and my family does not support me, visiting my GP would not improve my situation.
However, I have support. I have friends, and I have the Hypermobility Syndrome Association (link to the right). I have chosen to accept that I have what my friends and I refer to as 'Wonky Joints', which is accepted amongst all the people who matter.
I say joint 'issues', because I use the word 'issues' to mean almost anything - last year in maths I had polynomial issues, I have rejection issues, I have drug issues (not the ones you think!)
I also say 'issues', because I have no diagnosis.
I first visited my GP on the subject in 2007. He thought there was nothing wrong, but ordered a blood test. The results showed positive anti-nuclear antibodies (ANA), and I was referred to a rheumatologist.
The rheumatologist prescribed Naproxen, which made me sick, and did not help with the pain.
Then, I was prescribed Meloxicam/Mobic, which didn't make me ill, but also didn't help with the pain.
A visit to my GP resulted in a repeat prescription for codeine, and that's the way my medication has remained since.
My rheumatologist initially gave me a diagnosis of Juvenile Idiopathic Arthritis, but after the NSAIDs did nothing for me, and my bloodwork failed to show elevated C-reactive protein or SED rate (inflammatory markers) he retracted that diagnosis, and washed his hands of me.
The problem I now face is that the pain is getting much, much worse. It is beginning to limit my mobility and ability.
I do not go a day without pain.
The codeine does not take the pain away, it barely takes the edge off, and the side effects are too bad for me to take much of it - constipation, nausea, drowsiness, rebound headache.
So, here I am. I deal. I realise that because my bloodwork shows nothing of consequence, my rheumatologist is a first-class dick and my family does not support me, visiting my GP would not improve my situation.
However, I have support. I have friends, and I have the Hypermobility Syndrome Association (link to the right). I have chosen to accept that I have what my friends and I refer to as 'Wonky Joints', which is accepted amongst all the people who matter.
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