I Aten't Dead

3.5 Years and Counting…

• October 31, 2013 9:12 am

It’s almost 4 years since K was diagnosed a chronic pain problem. And it’s come back — yet again — with a vengeance. Had we known, in 2009, that this would still be happening in 2013, I’m not sure what we would have done.

For the past 4 weeks, he’s been maxed out on pain meds and still unable to even move around the house most days without support. Three times, we’ve all worked hard (K included) to try & get him back into school — to no avail. Each time, he can only manage about 2 hours before the pain stops him from being able to concentrate or even take in what a teacher is saying. He is so exhausted trying to cope with the daily pain that he’s sleeping 12 — 13 hours a night and yet still doesn’t have the energy to walk very far.

Currently, the pain levels he has to deal with would floor the average, unprepared, adult.

And what little gems were recently fired at him by senior members of his school’s teaching staff when he had to be sent home yet again…?

“How do I know that you are in pain?”

“I think it’s about time you saw your doctor about getting this sorted!”

And this from a school that prides itself on its inclusivity and its ability to support children with physical problems!

So for all of the staff (teaching or otherwise) who are becoming “irritated” by my son’s medical condition, I suggest you try a little experiment. Imagine what it feels like, as a parent, to:

• Watch your child being eaten up with pain year after year and be powerless to do anything to relieve it
• See other 13 year old kids and desperately wish that your child could be like them — free from daily pain.
• Try and plan a day out (let alone a family holiday) because you have no idea what state your child will be in tomorrow. Will he be able to walk? Will he be able to cope with being pushed in a wheelchair over anything but the smoothest ground?
• Cry yourself to sleep night after night because, as a parent, you don’t know what do any more.
• Agree to try multiple different treatments — each time desperately trying not to be optimistic, failing and then being utterly crushed when the pain returns and your child “fades” in front of your eyes again.
• Have the only chronic pain support service close down because the local health trust figured they could save some money when the service’s only consultant retired.
• Be offered new treatments — like hypnotherapy and acupuncture — only to have the offers withdrawn at the last moment because (again) the trust wanted to save money.
• Be harassed by teachers & education authorities because of your child’s “poor school attendance” yet — when you ask for help — receive zero support from said professionals.

Imagine you, yourself, are often in crippling pain. And those in authority around you imply that you are lying and pass comments like “you don’t look like you’re in pain”. How exactly are you supposed to “prove” that you are in severe pain? Is the fact that you have an extensively documented — albeit poorly understood — medical condition not enough?

Tonight is Halloween. Tonight, millions of children will have fun “trick or treating”.

Mine won’t. On a good day (and despite being almost 14 years old) he cannot go out alone in case he collapses. During a bad phase (like now), it’s too painful (in every sense of the term) to even try.

So dear teachers and education officials — shame on you for the way that you have treated both my son and myself. If tonight, you take pleasure watching your child enjoying Halloween, spare a thought for me & mine. And, at the very least, keep your comments & your condemnations to yourself.

• Filed under
  • Our House
• Add your comment
• TrackBack URI
• Comments feed