Heart? You mean I still have one?

Been getting some very unusual drum solos from my heart for a while.  There's no explanation for them.  When I get too warm, off they go and I may or may not faint.  One day it's tachycardic with atrial fibrillation (rapid, shallow beat with some fluttery fills Lars Ulrich never thought of). The next it's bradycardic with canon waves (very slow almost flat-line beats with sudden bass booms that are so huge they're painful).  So see the doctor?  I have.  Going for monitoring, or more likely a preliminary to monitoring, on 21st August.

Threw the technical terms at the GP.  He said don't you use those dirty words to me.  I said I didn't think he'd recognise the tracks I'd use to describe the timing on the beat.

Long and the short of it is we don't think it's the heart itself.  We think it's the dodgy electrics.  Whether that can happen depends on which 'expert' you ask and which journal/study you read.  But these are the known points we're working from:

• It only happens when I get too warm.  We know that my electrical signals are impaired at these times. 
• The nerve that would be responsible runs through the brain stem.  My brain stem is lit up like a Christmas tree on the scan results (I've seen them - it's just one big mess).  
• There are other symptoms I experience that also correlate to that nerve (you don't want to know, trust me).  An ECG is completely normal.  
• Blood pressure and pulse are normal (for me, half dead for most).  
• There is no specific condition that causes a heart to go first one way then the other like this that is not related to the electrics supplying it.

I mentioned it at clinic and they said they would write to the GP but never did.  So I went to see him and set it in motion myself.  Familiar territory there.

Before we can write to the neurologist and say read this study, we need to rule out anything else.  So I have to go in to be hooked up to machines for 24 hours to monitor what happens.  Unless I get too warm, I guarantee it'll be a nice, steady chart but because I'll get no caffeine, the blood pressure will slowly fall even further until they panic and think they need a crash cart.

The only problem it really causes right now, other than distraction and discomfort (those canon waves really hurt), is fainting.  Thing is, you can be just about anywhere and get too warm very quickly.  I don't like fainting.  It's not only a silly, girly thing to do, but it's also quite unpleasant and usually results in  getting hurt not to mention losing your last meal when you come to.  We still need to know what's going on though.  So off I go for another barrage of testing.  At least they can find a heart, so there's hope for me yet.

But will the workouts work out?

Guess who's just been to the gym?  Me!  Taxi door to door each way but really need to get the spinal power-cuts healing if only a little bit.  A couple of weeks ago, I could just about make it to the Post Office and back.  Three or four days ago I suddenly became unable to make it to the end of my street.  It's, the MS's, timing is as always spectacular.  I have to able to stay on my feet a while on Friday coming.

It's been so bad lately and so suddenly worsened, yesterday I was investigating folding motorised wheelchairs.  They're out of my price range, but I live on a hill, which necessitates a motor.  I'd end up in just as much trouble trying to wheel myself up as walk with the added problem of continually rolling backwards down the slope.  I also live alone, so a little folding chair in which someone could wheel me along is no good either.

So I'm attacking it head on and I hope it's only brought a stick to this fight because I've got a nice big knife!

The eyesight has at least settled to a point where I can see or at the worst work around it with the fabulous help of the lenses created especially by the fantastic Orthoptist, Miss Dayan.  The vertigo I'll just have to live with I think.  Nearly went over backwards in the gym, but thankfully still had hold of a machine at the time.  Could have been fun, and one way to let the staff know I wasn't working out drunk!

I had to stop going to the gym for a while between the op and lack of finances, but with a lot of form filling, that's reasonably sorted.  It's still going to cost more than I can really manage right now, but it's my mobility we're talking about, not vanity, and I think I can make sacrifices for that.  I'll have to take out a membership now the physio rate is finished.  £19 a month versus £14 a session (inclusive of taxi fares) is a no-brainer if ever I saw one.

Why is this Freyed Edge post?  Well, because I was really unravelling, especially yesterday.  For the first time, I was frightened about the future.  I never thought it would get this bad this fast.  It was in stealth mode, pretending to be mostly harmless.  It was all sensory and now it's not.  It turned from a buzzing fly into an angry wasp.  I can cope with numb limbs.  I used to get the bus and metro to work with two completely numb lower legs and feet.  It never phased me before these spinal outages started.  The sudden, dramatic worsening was a real shock.  I'm still a bit scared.  Resistance exercise may or may not help.  If it doesn't work, I'm a writer.  The last time I checked that didn't require running around.  So I might need a chair to do some things.  I'll still do them (I'm too belligerent not to).  Ultimately, I probably won't win, but that doesn't mean I won't keep trying.  My stubbornness could turn out to be the one personality trait I can't afford to change!