Wednesday, 30 June 2010

'Treat the souls of others with care, you cannot see the pain they carry.'

This is what I did today...I had my magic potion infusion for my rheumatoid arthritis at hospital - Actemra is on drug trials, and which hopefully will get NICE (National Institute of Clinical Excellence) clearance for general use soon.    The drug is administered by infusion into my arm and the procedure takes between 2-4 hours depending on how many blood tests and monitoring schedules are required; it's a small price to pay comparitive to how I was before I started Actemra.   

It's a
 mysterious process when the brain heals from the memory of pain; I was practically skeletal, I had gone down to a UK size 6 and my bones stuck out everywhere.   It was impossible to sleep or stay awake; even having a blanket cover me was painful.  If Merlin brushed against me I would scream inwardly - we had to work hard
on communication so he understood not to bash me around.  I'd brush him, and it was the only thing I could manage all day because that effort would be exhausting.  
It would take an hour to get up from the floor (lesson: avoid getting down onto the floor).   I would get stuck in the bath, I couldn't dress myself because I had no control over my fingers, these practical things were worse than anything else.   I have deep sympathy for the elderly in similar situations as a natural process of being human.

At times like this you can have a serious sense of humour bypass.   It's now all a haze, luckily I can't or don't remember most of it.  
None of the prescribed medication seemed to work; I was given morphine patches - these are extrememely addictive, I didn't know this until I wanted to stop using them.  
I always believed it would improve; for a long time, in ignorance I thought it would go away, like flu.     Just before diagnosis I couldn't move (which was the scariest bit); I decided when I got out of bed, I would buy a horse; my rheumatologist seemed horrified when I did.

With any challenge, you have to find a way of going on; it's not an option to say 'I can't' - there IS no other option; I understand the 'just another step' mentality of people who walk to the North Pole - (though I can't understand wanting to do that in the first place, that's something entirely different!).   
It did get better, there wasn't an option. 

In 2006, out of desperation I flew to the Mayo Clinic in Minnesota in the USA .   At that time, I'd have said my level of 'suffering' on a scale of 1-10 was around a 4-5.   Once I saw bald children dragging oxygen tanks round the Mayo I put it at 2.

It's all relative; we are all dealing with something.  
Not being religious in any particular sense, I was once very touched by a sign outside a local church which read 'Treat the souls of others with care, you cannot see the pain they carry.'

It seems to me it's worse to be family or a friend of a sick person than to be the sick person.   

In a peverse way, its easier being the sick one.  All you have to do is try to get better, you can be in a little world of your own.   My grandad had terminal cancer when I was young - I felt bewildered and helpless.  If children can feel like that, how must it feel for adults around sick people?    I have a great deal of sympathy for people who are not ill but are every bit as affected, they don't get medical attention or even much understanding, reassurance or sympathy.

I hope the drug is approved for general use in the UK soon; it has made a huge difference to me.   As I understand it, it will be used in earlier stages of the disease which will alleviate years of suffering for patients and their families, which can only be a good thing. 

No comments:

Post a Comment

I love to hear what you think! Please leave a comment x