Letter from the North

Porthleven, Nachos, Blood Pressure and Poo – 21-Apr-2008

 

Am I really invisible? 

Sat 21-Apr-2018  

As part of the “do what Teresa wants” world I now live in (happily doing it, I might add!), she has wanted to go to the Porthleven food festival every year since we came here. I have usually been working up country and couldn’t go or down here for a weekend and not wanted to lose one of my two days at home on something I have no real interest in – yes, food and beer, NO to all those people! 

Porthleven was an option for her Birthday trip out, but she decided on the birds of prey (see last week), so I’d got out of Porthleven. 

However, I do try, so I said to her that, since it was a nice weekend, did she want to go there for a “day out”. Apparently, she did. Bugger, I was just trying to be nice, I didn’t want a yes! 

Anyway, it seemed like a good opportunity to try out the lawnmower (aka disability scooter) so off we went. I was stressed in so many ways: 

  • Not been to Porthleven before 
  • Not been to the food festival before 
  • Not parked in Porthleven before 
  • All those people 
  • Will the lawnmower work, have enough range, handle the uneven ground? 
  • Bet there will be a queue to get in… 

Well, there was a queue to get in, but everything else was fine and Teresa had a lovely day. Having the Lawnmower helped a lot, I could keep up with her and didn’t get tired – well I did, but it took hours not 30 mins! 

The biggest problem I had was being invisible. There is a thing the general population has with wheelchairs, they just can’t see them. I’m not exactly hard to miss and on the scooter not much shorter than Teresa, but they walk into me, across me and in general they have no awareness at all.  

One thing experienced with wheelchairs when I broke my leg, is how protective Teresa becomes. On this occasion she’d say, ‘I’m going to be big’ and walk in front of me, arms slightly out, to forge a path. What she couldn’t see was the way people made way for her but, once they’d passed, flowed into the gap between her and me as if I wasn’t there at all… 

I have to say that the Porthleven Food Festival wasn’t as wheelchair-friendly as it could be – some uneven ground and a few places, where power cables crossed the thoroughfare, where the “covers” were too high for my small ground clearance. However, people (complete strangers) just muscled in and lifted the scooter over for us, so it was fine. 

So, we had a lovely day. It’s not my cup of tea, never would be, but it IS Teresa’s and I got a lot of vicarious pleasure watching her enjoy herself, and that does make it worthwhile. She has to put up with my autistic nature, so it’s nice when I can give her something in return. 

It was certainly a gloriously sunny day and I was wearing a sun hat – and the number of times we were referred to as ‘ladies’ was amazing! I think the hat covers my bald head and the scooter hides my height and size, and so they just see a (not very attractive) older woman.  

I did get one treat. I used to visit the East Coast of the US (New Hampshire) twice a year for work and got to like two things 

  • Fish Chowder 
  • Nachos 

Teresa has tried to make the Chowder, but my taste buds will just not handle fish ???? 

At Porthleven there was a stall selling Nachos with all the trimmings and pulled pork. Perfect, I can do pork and I declined the Jalapenos (which are too much for my sensitive mouth now) and I had all the rest, lovely a real treat. 

On our way home, we popped into Sainsburys and although my hip was stiff and my feet a bit sore, I managed the walk around the shop no problem, wouldn’t have happened if I’d been on my feet all day at Porthleven! 

Sun 22-Apr-2018  

Some work and then crashed – not surprising after a day out yesterday. Well, not surprising, but rather annoying 🙁  

Mon 23-Apr-2018  

A normal-ish day. Well I thought it was but I’d had a headache all night and it was still there this morning. Because I have to keep a close eye on my blood pressure (Pazopanib often increases it and it does do so in me). There are two key bodily effects – feeling faint is an indication of low blood pressure, headache signals high. So, I thought I’d better check. Yup much too high and diarrhoea as well. I suspect I’m being hit by a spike in Pazopanib side effects – not sure why, no obvious cause, so I’m worried, but not panicking 

It’s all very odd.  Before the whole cancer thing cropped up, 120/80 was what my BP drugs were trying to achieve  

Since the accident and Pazopanib, I’ve generally been on the high side and the drugs I take for BP have increased to get it back to around the 120/80. A few weeks ago, it suddenly dropped down to the region of 100/70 and so one of my evening BP drugs was stopped. For two weeks it stayed low and we were considering another reduction. 

Today it suddenly spiked into the more than 160/More than 100 region. Interestingly, at the same time my heart rate dropped from its usual 100+ to mid 70’s – unheard of for me! 

This was at 4.00 pm and it was pointless talking to GP or NHS Online or even casualty. None of them have any idea about Pazopanib or my normal BP/Heart rate patterns. I will talk to the cancer nurse in the morning, if I’m still concerned.  

If my BP was consistently over 160/100 then I would have contacted someone, as that is getting up into dangerous territory. 

So, I took the “deleted” evening pill, monitored the situation, and by the morning (Tuesday) it was close to a normal. 

Tue 24-Apr-2018  

I didn’t go to the office today, although I’m still working (from home) but here I can stop and rest at the drop of a hat and keep a close eye on my BP. 

Just as well, by lunchtime the BP was going crazy again. I rested in the afternoon. By now, as well as the BP, I had chronic diarrhoea again and needed to take Loperamide (Imodium) twice in quick succession. However, by the evening, the BP is coming down – albeit slowly 

Wed 25-Apr-2018  

BP is almost down to “normal” this morning – better than yesterday morning, but the real measure is at lunchtime since that is 2-3 hours after taking Paz and that I suspect, is when it’s at its “max” driving up the BP, certainly seems that way! 

However, it was close to being back to normal at lunchtime, phew. 

The diarrhoea from yesterday didn’t seem to be a problem this morning, in fact a “normal” visit 

Thu 26-Apr-2018  

Spoke too soon, this morning we had close to “constipation”, that “spikey” feeling I recognise and yes, great, blood time. Only a tad on the loo roll, but there is blood, blah, always on the knife edge, that’s the trouble with severe diarrhoea attacks, stopping them can tilt you the other way. That usually happens the next day, but with my body, who knows. Hopefully my “care” this morning (in the “pushing” department) means that “smear” is all there will be, but I’m ready for disappointment later today without needing to panic. 

Told you the poo tales were never very far away 🙂  

Autism and Anger 

I made a loaf in the bread maker earlier and once it was done, it needed to be turned into sandwiches before it had a chance to dry out – happens a lot faster with home-made bread than shop bought – no additives to “help it” 🙂 . 

I also needed to make my tea, and was running late. All this started about 6:15pm. Teresa was also in the kitchen, rummaging in the cupboards, and dropped a jar that broke on the floor tiles. The bread was very soft and proving difficult to cut, the loud bang from the jar was (I think) the last straw and my body went into overdrive: massive stress 

This subject needs a separate blog on its own. If you are interested, and many couples with at least one autistic should be, please read this (LINK). The word to remember is “meltdown”. 

Fri 27-Apr-2018  

Hmmm, poo seems to be behaving at the moment. Yesterday that one trip was it, despite many signs suggesting it wanted more. This morning it did eventually (and reluctantly) do its doings, but again it was quite on the “constipated” end of the spectrum, no blood this time at least. I really don’t know what is going on. I don’t want to dial back the Ondansetron as it is brilliant for nausea, but it can cause constipation so maybe I need to try alternating days instead of 5 on 2 off. There is nobody to ask about this because there is no research, each of us is different and we each need to find the right drugs and the right ways to use them ourselves. Clearly self-medication is stupid and dangerous, but the application of common sense is not the prerogative of the medical profession and I know many aspects of my body and how it reacts to the drugs I take better than they do.  

Couple of hours later and things are “loosening up” and still blood free, so what on earth is going on? 

Even later, yet more normal poo, seems there is some catching up going on. 

I went over to the North Inn this afternoon to do some technical reading, stayed over there for tea and Teresa joined me for a curry. 

When I got home, oh yes, the diarrhoea is back – I was aware of it before the food, so it wasn’t that. Hmmm, my body and especially my digestive system, does seem to have a mind of its own. 

Oh well, Poo tales over for this Blog, I bet that’s a relief (double meaning intended) :-). 

Public Talk? 

Teresa and I are doing a session at the Penzance Litfest (July 4th – 7th) titled  

Saying the Unsayable – blogging without words 

Which will be about the challenges I face in writing this blog and how Teresa and I handle (or not) those challenges. 

I believe the session will be on Thursday afternoon (5th July), though that may be subject to change. If you want to come along, you would be very welcome, there will be plenty of time for Q&A (about anything) – so keep an eye on the PZ Litfest website.

Postscript – Blood Pressure panics 

You start to worry (panic) about high blood pressure at a sustained Systolic of 180 and/or Diastolic of 90.  

Below are some of the figures we keep for our record, what you can’t see in this table is that these are “averages” some individual readings were 160+ for Systolic and 100+ for Diastolic, but that was one or two readings out of seven or eight, my BP bounces around even over the space of a few minutes! 

The entries with a * against them are all taken around the same time. Because blood pressure varies during the day, comparisons are best made at the same time. I know what the pattern is for me and so the results at the other times are more meaningful for us than they seem to be from this table. 

You can see the peak on Mon (it may say 136/89 but actually I had a couple of reading in the High 150’s/High 90’s), which is when I took the extra BP pill and is still there on the Tuesday (these drugs take time to kick in) but is now down on the Wednesday after two evenings back on the usual regimen. 

And yes, my resting heart rate really is that high, always has been high, but interesting how it is inversely related to the BP! 

Date  Time  Systolic  Diastolic  Pulse 
13-Apr-18  17:10  111  77  99 
17-Apr-18  20:07  114  78  99 
18-Apr-18*  13:20  112  67  117 
20-Apr-18  19:30  119  81  97 
22-Apr-18*  13:00  114  73  110 
23-Apr-18*  13:00  136  89  89 
24-Apr-18  07:30  124  90  75 
24-Apr-18*  12:55  155  98  97 
24-Apr-18  14:30  130  86  91 
24-Apr-18  19:56  132  87  96 
25-Apr-18  07:50  113  73  103 
25-Apr-18*  13:13  122  85  104 

 

What happens if you worry about your blood pressure being too high? hmmm… How do you relax when you are REALLY worried you won’t wake up in the morning? Self-fulfilling prophecy? 

I did relax. Well, as well as anyone could in the circumstances, because I was pretty sure that the extra BP pill would do the trick, but it wasn’t easy. As for what Teresa went through, well you can guess! 

The Bean, Pendeen, 21-Apr-2018

2 Comments

  • Kate Mole

    Dear Bean,
    Just as it’s hard to have to watch the person you love going through pain and suffering, it’s wonderful to see the person you love being happy about something….. I’m glad Teresa enjoyed Porthleven and I’m glad you saw her enjoying it! It was great to read about such a nice day out (despite the limitations and the invisibility, etc).

    I will be fascinated to catch you at the LitFest.

    Love,
    Kate.

  • Linda Camidge

    Great that you’re appearing at the Litfest

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