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!

Paying for cash

Was just chatting with the owners of my local shop. They've known me a long time now and we talk about all sorts of issues. They feel like extended family, we have so much in common and stare aghast at the same people. They've got my phone numbers because I'm just around the corner and am happy to help.

Someone complained to them in front of me that the Link cash machine takes £1.80 for every transaction when the post office along the road dispenses cash for free. I've never heard a better business case for cash machine charges as I just have. The machines have to be manufactured, paid for, maintained, filled and they're placed in locations that are convenient for the public but not the people involved in that entire process. Would you make a product, give it away and then go to work for nothing? You'd charge people to have one, wouldn't you? The shop doesn't make a profit on that machine. They cover the cost of it and they keep it because it's a convenience for their customers and might just bring some people in.

My question would be do the people who complain about a paid for cash service phone their water company and complain about paying for the most commonly occurring element on the planet whether they run the tap or not? I bet they don't. You pay for your water for the same reason as you pay for your convenient cash. The system doesn't run itself. 

We got on to business in general. They have massive overheads and make just a tiny amount on each item they sell. Did you know, all you smokers and drinkers and I don't exempt myself from that group, that small shops make between 2 and 5 pence on the fags and booze you complain are so expensive? The rest is all tax, manufacturer and supply chain. Your local shop does not import products directly or have enormous bulk buying power like the supermarket giants do. They go to a cash and carry where they pay not a whole lot less than they then sell the goods for.

That little local shop pays £1000 a month just for electricity. They have lighting, tills, fridges and freezers to run not to mention that infamous cash machine and the security systems. They have deliveries to pay for - bread, milk and fresh produce - business tax and yet more tax on the property. Then there's insurance and heating, assistants to pay and the list goes on. They get by, but only just.

Now that's a really busy shop and you might imagine that they're minted but they're not. They are an important part of what's left of the community around here. I talk to people in the shop that I'd never have talked to otherwise. It helps that I know the place like the back of my hand and can show people where things are. That shop has been a lifeline to me for ten years and even more so in the last two years. It's a place where I can get exactly what I need cheaply and at the same time catch up with the lovely people that own it.  They're really feeling the economic pinch, just like the rest of us.  From my perspective, i.e. supporting me and the cat, the cost of living has risen by about 50% in the space of 6 years.  It's the same for small businesses.

I support my local shop because their presence supports me and they've become a part of my life. Support your local businesses. We need them as much as they need us.