Ex-Borg

I'm not like you.




I was created by a race called The Borg.  They slipped into the planet's atmosphere, created me with a unique set of circumstances and left me here.


I am different.  I was born with a disability.  From the second that I was born my life became very different to yours.

My disability (because I obviously went to a shop and bought it) is called Cerebral Palsy.  It happens at birth and once you have it, you have it for life, not just for Christmas.  The important thing for you to know is that you can't catch it.  Its not contagious.  I'll repeat that for all you frightened people out there: its not contagious.  Not contagious in any way.  Check with the Government if you don't believe me.  Or don't because mostly they're useless.  Check with your GP if you really have concerns.  The easier option is to believe me.  Because you know that I'll always tell you The Truth.  I'm that kinda guy. 

Cerebral Palsy means that the neural pathways in our brain don't make the same connections that yours do.  So things like walking, talking, eating and everything else that is ordinary and easy for you is more challenging for somebody with CP (we love our acronyms).  If you want more information about this condition, in case you're weirdly curious, I'd recommend visiting www.scope.org.  But do it later, okay?  Trust them too.  Because I told you that its okay.

One of the many other ways that I'm different from you, is that up until March, I used to be a cyborg. That's right, a cyborg, like The Terminator, except that I didn't go around randomly killing people.  When I did, I did so under strict orders.  And they were only Very Bad People.  I know because They told me.

But I was a cyborg.  Part man, part machine.

I had an implant in my stomach.  A computerised device which could hold a surprising amount of medicine which fed this medicine to my legs to make them do things like bend and move when I wanted them to.  Like yours do.  But when the medicine is fed directly where it needs to be, you don't really need to use that much of it.

You see, when you take medication, it doesn't specifically target whatever pain you have (no matter what the ads tell you).   The medicine has to go to go right around the body before it gets where it needed to go in the first place.  And if you’re taking a muscle relaxant like Baclofen, it takes effect on the whole body, not just the legs where it should be.  The implant delivers medicine straight to where it is needed on a finely tuned basis.  Because of the laser targeted accuracy (or rather the catheter tube) the drug goes straight to where it is needed.  The doctors program all of this into the machine.  And tell me who to kill, maim, slap around, etc.

I have had implants for about twenty years.  They need changing after about 4 or 5 years, because ironically, the batteries run down, and its not a device where you can remove it, change the batteries and put it back.  But over 20 years, its hard to keep track of how many I’ve had.  I’ve lost count.  Really. 

When I had an implant, every couple of months I used to go to hospital have an injection which put the drug into the implant and then it would go from there through a tube called a catheter into my spine where it would do stuff that I used to think was magical and then later took for granted.  This, I now know, was a mistake.  I regret taking technology for granted which made my life less of a struggle.  By extension, I probably took the people who looked after me for granted too.  The company that made the implant are called Medtronic.  For more about the device see

http://www.medtronic.co.uk/your-health/cerebral-palsy/device/index.htm


Its amazing what medical technology can do.  The NHS borrowed all of that stuff from the Intelligence Services and Science Fiction writers.  And put it to real use.

By the way, save our NHS, its the only one we've got.  And lets start giving them positive feedback, because the only time the medical profession is in the media is when its under fire.  And that's not fair.

Sorry, rant over.  Back to the blog.

With the implant I could move about easily.  I had better posture.  I could drive without tension and struggling.  I couldn't walk properly, but that was never the aim.  The aim was that I would have a better quality of life.  I had a better quality of life, despite other crap that I had going on, my physical health was pretty okay.

All of that stopped in March.

In March I developed an infection which meant that the implant had to be removed.

The cause of the infection is still a matter of some debate.

Those hi tech medical experts are able to insert a catheter underneath the skin but wrap it around all the major internal organs.  So the implant would be around or near the stomach and the catheter would be wrapped around the body until it gets to the spine.  That's where the drugs go to.

But whilst we're praising the ingenuity of the medical profession we have to give credit to the human body.  Because that catheter slowly over time becomes part of the body, and flesh grows around it, keeping it secure and keeping it safe from harm.   To be honest, just knowing that the human body does stuff like that just plain creeps me out.  Its not natural!  (Except, in a way, it is.).  You human beings are surprisingly adaptive.  Disabled people are more so.  I've learnt this in the 40 years that I've been on your planet.

Again back to the story.  Changing the implants because of the whole battery thing.  They weren’t Duracell, but better, because they used to last 4-5 years.  The newer implants have batteries that last 6-7 years.  They're smart enough to tell the docs when they need changing.  But whilst the implant can be fairly easily changed, changing the catheter (the tube that the medicine flows around) is another matter.  In some cases the new implant can use the old catheter tubing in place.  Therefore the surgeons don't need to put a new one in.

But taking an old catheter tubing out is another matter.  Because its now grown to be part of the human body and therefore resists removal (remember the whole thing that creeps me out?).  Its not just something that the docs can gently pull out.  Because the body kinda gets attached to it.

This is the Borg come to life: resistance is futile.

Four or five or six implants leaves of lots of bits of catheter in the body, no matter how sealed up they are.  One theory is that one of those bits of catheter caused the infection.

Another theory is that I have an ongoing skin condition called atopic eczema (I do have all the fun.) Skin infection are common with this condition.  A skin infection did start around the implant site and that just spread.  I will blog about my life with AE because I feel the need to get that out of my system and share that with the world.  But that's another blog.

Both of these are theories.  Trying to prove conclusively which was the culprit would be very difficult.

So now that I have no implant how has life been?

Its been a struggle.

I'm understating the fact.  Its been a f***ing nightmare. 

I don't know how other people with CP (or similar conditions) do it.   I really don't.  Any of you reading this have answers, please feel free to reply and let me know.

Taking baclofen orally (by mouth) is massively draining and it has effects in waves - the drug washes over you and you feel a wave of tiredness.  Over your whole body.  God help you if you're driving - or trying to work because when the fatigue hits you all you want to do is rest and sleep.

The sudden loss of the implant has had a major effect on my body.  Its gone into shock and sent the atopic eczema into overdrive.  Now I'm fighting a battle on two fronts and If I'm honest, I'm losing.

So now that I've given you most of the backstory, we ask the $64,000 question: what happens now?

To answer that: I've got the run down on the options that I have.  To save time, I'll tell you what my thoughts are on them as we go along.

1.Do Nothing.  This would be the easiest of options except that its been almost 16 weeks since the implant was removed and I'm, if I'm brutally honest, in a living hell.  The combined war of eczema and baclofen withdrawal has left my body "in distress" as I described it to my consultant recently.

Her reply was equally as frank. "I'm not surprised".  You've had baclofen going through your system for 20 years, did you think that the sudden withdrawal of it wouldn't have any effect on your body?

And she's right (dammit) and the spasms are getting worse, despite the oral baclofen. Especially at night, when its the one time when you want your body to calm down.

In actual fact I tried to "do nothing".  I thought hey Spasticity?  I've have had before.  Lived with it for half my mile.  I could cope with this.  I could cope with anything.  Easy.

However the Eczema going crazy on me, was the second punch I wan't expecting and it floored me.

2.    Look for eczema strategies.  Well, I'm doing that at the moment and I'm still working on that.  The previous solutions which half-worked before are not anymore because of the distress that my body is under.  All eczema is is dry skin.  So the key strategy to deal with this battle is to moisturise, moisturise, moisturise.  And I do.  Every two- to three hours.  And each session takes nearly an hour.  Moisturising gives my skin some relief but it also makes my hands really greasy.  So you're buggered if you use a wheelchair (which I do), and I have to be careful when driving my car because my hands are slippery and my car has hand controls.

Eczema is worse at night because that is when the body generates the most heat.  And there have been 96 nights since my operation.  Every night is a nightmare.  I'm not joking about that one.

So I'm taking medications to help me sleep.  Because I can no longer just lie down and go to sleep like normal people.  Not anymore.  Antihistamines which are supposed to have a side effect of making a person feel drowsy.  Not me.  Not anymore. 

  Therefore I'm having to take quite drastic measures (and I don't mean a hot cup of cocoa!) to go to bed and get some rest.  And that only works for about 4 hours before I have to get up again.  I'm even trying alternative medicine.  But all of them are quite expensive, all of them tell me that it can be done and that it will be a slow process.

3.    Have the implant put back in.  I've a tentative date for September, but to be honest, I'm pushing for for it to be as early as possible, because I'm living every day on an rollercoaster that is half in the sea. I don't know how I will be from one day to be next.  I'm in my third week of being off sick (I drive my car intermittently) and I'm giving thought to having another week off (not really a choice, but not much option either).

Bottom line, is that I'm struggling like never before - except before when I had the pump in over 20 years ago.  Then I was in a lot of physical pain.  Now the agony is different.  I was a different person then.

I'm not the person I was.  My life has undergone a massive change, and I've written before about change: when it happens suddenly  and out of our control we don't react too well.


So, 16 weeks on, am I improving?  I don't think I can answer that because honestly I can't tell. I know that some days are better than others.  I also know that there are days where I don't know where to hide.  I can't hide from my body.

All I can do is take things one step and a time and make the most of every day.

Take care

Joe.