Letter from the North

More medical stuff, relationship still hard work, prepare for Shrewsbury folk fest – 10-Aug-2019

New wheelchair, I wonder why there is no power?

Sat 10-Aug-2019 

Hmmm constipation continues from Friday not surprising after taking loperamide on Thursday, today is worrying 

Sun 11-Aug-2019 

Constipation continues, even after three softeners overnight. Action MUST be taken. 

For the squeamish, move right along and skip the next paragraph 

For others, as I have had to work out, when in this state and things are clearly “impacted”, the best thing to do (since all else has softened but is backed up), is a little (digital) help. Not as disgusting as it sounds but a very practical thing that deals with the immediate blockage and lets everything else come through “naturally” and stop the situation getting worse. It was only after I took this action during the Warwick, 3 day “hiatus” that things got moving. Not the sort of thing you want to learn, but I remembered it was necessary when one of my children had the problem. Now as soon as it feels impacted (it’s waiting to exit but cannot complete the last few millimetres, I will act, no waiting for a few more days. 

Ok, the squeamish can return 🙂 

Mon 12-Aug-2019 

Blood test 8:30am. A perfect opportunity to compare one person’s experience against mine when I meet someone. 

So, on arrival, I knew the phlebotomist (well I would, I go there regularly!) and so we chatted about the test to be done. Selected the best vein to use (I am a bit pin cushioned so, …), after all I know where works better than others, it’s me with the holes in them! 

We discussed the blood flow, what happens if the needle moves and there we were, the phlebotomist making sure the blood was flowing and me watching my arm and the needle to make sure I didn’t move. 

Once done as she batched up the blood and did the paperwork, we discussed the problem with Oncology blood tests – they are not available to the GP, but they have worked out if they take the request, make it from themselves and then copy the results to Oncology then they get their results. Crazy! 

Anyway, as we were chatting, I suggested that maybe the tourniquet come off now. We laughed and off it came, she’d forgotten, it happens. 

So, that was a fun visit, lots of chat and banter, no stress at all. 

Well, I’m sure that’s what the fly on the wall said. Me, I got home absolutely wiped out by the effort in delivering such a command performance! Welcome to the world of autism and masking! 

Otherwise just got on with work 

Wheelchair arrived today (pretty quick) 

After assembly, it was as dead as a doornail, so being me, an analysis followed, this was sent to the supplier: 

  • The chair was received today, no damage to packaging. 
     
  • When my wife returned home, we assembled the chair, connected the batteries as instructed. 
     
  • Pressed the “on” button, nothing happened.  
     
  • Lead Acid batteries will have power in them on delivery (unless they are dead) so I expected some level of life even without charging. 
     
  • But, just in case, I plugged in charger. Nothing happened. Pushed “on button” again and this time the top 5 leds ripple from nothing to all 5 and then back to nothing again. Second row of LED’s do nothing – this means chair is locked because charger is plugged in. 
     
  • Checked both batteries and the rear battery (red connector only) is faulty, one of the two terminals has a loose wire (not attached to the battery!) Looks to me like the crimp to the connector wasn’t properly crimped and the wire fell out! 

I online-chat’ed to the supplier before sending the email and though it was 6:20pm (I think) I got a response from Josh who was providing out of hours cover! He asked for photos and said they would look at in the morning. 

SERVICE! 

The company (Glebe Healthcare) were wonderful (and cheap) and after some discussion as to whether they would get a whole wheelchair sent out to replace the “broken” one, we agreed that since I had stuffed the detached wire into the connector as a temporary fix and everything worked, there was really no need and a new battery box was quite sufficient and I could sort. To be honest I could have just re-crimped the cable but I didn’t want to have to. 

Glebe contacted the supplier; a new box arrived the next day (Thursday by now). 

Tue 13-Aug-2019 

Did some day job stuff, didn’t go to Penryn this week as today I have a CT scan. 

So, off to West Cornwall I toddle at 10am. Arrived bout 1/2hr early for the scan. I worry about parking and also know that if I arrive early, chances are they will take me in early and so they did. 

Again, the person putting in the canula (for the contrast) and I chatted about the best vein, what size canula they use. 

Scan, yup, I know the radiographer doing the scan, well, you do. Contrast hooked up and scan went fine as usual. 

A wait of 10 mins to make sure no adverse effects and off home. I was finished with my scan before it was due to start. The next patient didn’t arrive as early as me and so they had to sit idle for 10-15 mins before being used. Expensive resource to sit idle. 

Anyway, back home and wiped out not only because of my (usual) performance but also the contrast seems to have that effect – or maybe it’s the stress caused by the fact that what follows the scan are the results and they are bloody scary! 

Wed 14-Aug-2019 

Lost today down to usual post scan exhaustion 

Thu 15-Aug-2019 

New battery box arrived, took me 10 mins to swap over the battery and all is running nicely, I can’t wait to test the wheelchair out and about. 

We will keep the mobility scooter for  festivals, it is more stable, we have a spare battery – festivals have charging points for batteries but while charging you can’t use your chair/scooter, as we have a spare battery for the scooter AND it fits in front of my feet I can use the scooter to carry a heavy battery to the charging point (because I carry a spare). 

In general, the buggy (as we call the scooter) carries an awful lot of “gubbins” that we take around a festival and does the job so well – even with limited ground clearance (2” vs 4” for the chair!) 

For going to the University or shopping or anywhere else, the wheelchair is far more manoeuvrable and easier to use 

A diarrhoea attack tonight but then I’m having grapes (at lunchtime) and broccoli (Calabrese at the moment but proper broccoli earlier this week) with my tea.  

Clearly it can be a tad too much for my digestion but a Loperamide stopped it, … 

Fri 16-Aug-2019 

Just work, though poo is on strike for now, so will have a less ideal lunch and grapes and so if it restarts without going nuts. 

Actually, I am, hopefully, having a chicken chow mien from the Chinese takeaway as a special treat. It WILL get things moving so I may have to take a loperamide before eating just in case, but worth it to just have some normal food (and a treat for me) in my life. 

Fodmap RULES, it gives me the space to have a bit of nice without things getting out of hand. 

Postscript 

Teresa and I are moving onwards slowly, we are preparing for our next folk festival, I’m not convinced I want to go if it there is any risk of a repeat of Warwick, but if we don’t prepare then the decision is taken out of our hands – we won’t go.  

It’s hard for both of us, in many ways I’d rather just not go than take a risk. Teresa can’t plan the things she wants to go to which is part of her pleasure in going. We both have to try and mentally (and emotionally) “dance on the head of a pin” so that we are hoping for but not expecting against. It’s hard, albeit in very different ways, for both of us. But we are trying – that’s what you do, you just don’t give up. 

The Bean, Pendeen05Sep-2019

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