Sailing with increasing Disabilities

[oldmanofthehills]

How do folk manage sailing with disabilities? Do folk just give up when it all gets too much?

I have had various frailties since premature birth 74 years ago :- dodgy bowels, weak bladder, dyspraxia, and tendency to allergic reactions. Well a yacht big enough to have a proper heads sorts the first two, good grab rails and caution sort the third, and an epi-pen and tolerance of rashes sorts the fourth. But now its got worse. 15 month ago I went into acute urinary retention so was catherised for 10 days. Went for weekend sail and found it hard to row with peebag by knee and hard to sleep with night peebag trailing onto floor on side berth - turning over was feared as possibly disastrous, however only near disaster was knocking drain tap while talking to Commodore at fitting out supper - "why is my foot damp, sh****".

I noticed blood in wee two weeks ago and had camera up the parts - all clear with minor bleed after excercise but need prostate reducing anti-hormones. Then this Thursday dawn I went into retention again and was catheterised again - retention just possibly initiated by camera related soreness. Decided not to go to YC summer BBQ yesterday and anyway weather uncertain.

However I have booked 3 weeks leave from work, and indeed booked a berth at Beaucette Marina from next Wednesday. And I would really like to visit Guernsey, Alderney (and its Railway) and Normandy on our own boat. Unfortunately NHS subcontracted health care has today delivered the wrong - short tube - peebags whereas I need long for any convenience while sailing as short need complete undressing unless wearing a kilt, and they are closed till monday and take several days to respond, none of which fits well with sailing tomorrow to Salcombe and then to Guernsey Thursday depending on F5+ southerly abating. I think by careful retention of stocks, end to end linking of short bags and sheer bloodymindedness will get us there, and if all goes pear shaped we will turn and flees

So some of us sailors due to nature or advancing age must have infirmities, how do others cope?

 

[johnalison]

When I had a self-retaining catheter for several months I was provided with a flip-flow valve. This fits onto the catheter and allows you to switch it off and only empty when required. This also has the advantage of repeatedly distending the bladder and thus preserving something like normal function, without which it tends to shrink. Although not a normal life it was more tolerable than with having to use bags.

I am sure that with determination you will manage and I hope they can sort out your condition. In my case this didn’t turn out to be possible and I converted to ISC with 4x daily self catheterisation. This entailed loading the boat with box after box of supplies for a three month cruise, but we did it for many years and cruised from Brittany to Poland quite happily, and basically living a normal life quite comfortably. This is pretty trivial compared to some of the conditions people sail with but I hope it gives you encouragement.

 

[mjcoon]

When I had a self-retaining catheter for several months I was provided with a flip-flow valve. This fits onto the catcher and allows you to switch it off and only empty when required. This also has the advantage of repeatedly distending the bladder and thus preserving something like normal function, without which it tends to shrink. Although not a normal life it was more tolerable than with having to use bags.

I am sure that with determination you will manage and I hope they can sort out your condition. In my case this didn’t turn out to be possible and I converted to ISC with 4x daily self catheterisation. This entailed loading the boat with box after box of supplies for a three month cruise, but we did it for many years and cruised from Brittany to Poland quite happily, and basically living a normal life quite comfortably. This is pretty trivial compared to some of the conditions people sail with but I hope it gives you encouragement.

I went on two fortnight sailing holidays wearing a catheter. It does introduce complications, especially when wearing shorts...

Worst accident was at home, though, when flip-flow valve became disconnected and emptied the bag into my bed! Solved it for future nights by wrapping an elastic band round the crucial joint.

A "TURP" prostate operation (in two sessions, unfortunately) sorted out the problem, and proved it was not cancer. But the trend continues...

 

[LittleSister]

Unfortunately NHS subcontracted health care has today delivered the wrong - short tube - peebags whereas I need long for any convenience while sailing as short need complete undressing unless wearing a kilt, and they are closed till monday and take several days to respond, none of which fits well with sailing tomorrow

It occurs to me that you can probably get supplies of what you need on Guernsey. A quick Google search found Guardian Medical Supplies (its website not very helpful, but another outlet, St. John's, is seemed more indicative of the sort of thing you need, but is closing (or has closed) and its supplies being taken over by Guardian). If Guardian can't supply, they might be able to point you to somewhere else on the island that can.

Alternatively, perhaps you could have some sent from England to you at Beaucette or some other marina?

If all else fails, make a virtue of necessity and go with the kilt!

 

[oldmanofthehills]

It occurs to me that you can probably get supplies of what you need on Guernsey. A quick Google search found Guardian Medical Supplies (its website not very helpful, but another outlet, St. John's, is seemed more indicative of the sort of thing you need, but is closing (or has closed) and its supplies being taken over by Guardian). If Guardian can't supply, they might be able to point you to somewhere else on the island that can.

Alternatively, perhaps you could have some sent from England to you at Beaucette or some other marina?

If all else fails, make a virtue of necessity and go with the kilt!

Thanks for such advice as you can find. The trouble that with NHS supplies being subcontracted to a commercial organisation a non-restricted product still cannot be dispensed without a prescription - because its now "Contractual". I will see what I can blag andd pehaps they are less stuck in the CI. Alternatively, perhaps Sirona Healthcare will ring me up before I leave Englands shores and I can get some kit in Salcombe or Dartmouth

I was indeed toying with the idea of buying a kilt for Augusts Festivals just for the heck of it - so might actually order one to be delivered to my home for our return late July. Cornish and Breton Black naturally

 

[LittleSister]

Here's the link to Guardian Medical Equipment and Supplies on Guernsey that I forgot to put in the previous post:
Guardian Medical Supplies

If you get to Normandy the French may well not have as restrictive an approach to prescription requirements as here.

Good luck. Hope you manage to get and enjoy your trip despite this aggravation.

 

[Sandy]

So some of us sailors due to nature or advancing age must have infirmities, how do others cope?

Many use the services of Cunard.

 

[mjcoon]

Many use the services of Cunard.

Probably including the less-advertised on board morgue and chapel...

 

[oldmanofthehills]

Many use the services of Cunard.

I doubt Cunard go up Helford River or The Dart, and I am certain they dont dry out in GreenBay

We are presently sailing on broadish reach in F4 rollers heading to Salcombe. Didnt have to row to mooring which was as well as outboard 2hp flat out only beat the tide by edge crawling in slack water the crabbing accros

Domestically I can manage peebag by stand relevant foot on rim of heads and reaching for pee-tap. Havent falling in it once however I but nervous about anchoring as then need to up anchor later without wanging parts or bag on hefty ironware

 

[johnalison]

I doubt Cunard go up Helford River or The Dart, and I am certain they dont dry out in GreenBay

We are presently sailing on broadish reach in F4 rollers heading to Salcombe. Didnt have to row to mooring which was as well as outboard 2hp flat out only beat the tide by edge crawling in slack water the crabbing accros

Domestically I can manage peebag by stand relevant foot on rim of heads and reaching for pee-tap. Havent falling in it once however I but nervous about anchoring as then need to up anchor later without wanging parts or bag on hefty ironware

The bag should be strapped to your thigh and not swinging around. I was supplied with Velcro straps but any similar would do.

 

[oldmanofthehills]

The bag should be strapped to your thigh and not swinging around. I was supplied with Velcro straps but any similar would do.

I prefer lower leg bag as can readily see tap and empty while standing. It was what i was given 15 months ago and worked fine for the 14 days it was in use. I dont see how you can use thigh bag without taking trousers down and thats a bit of an issue walking through nature reserves etc

 

[johnalison]

I prefer lower leg bag as can readily see tap and empty while standing. It was what i was given 15 months ago and worked fine for the 14 days it was in use. I dont see how you can use thigh bag without taking trousers down and thats a bit of an issue walking through nature reserves etc

It’s 18 years since I had to deal with one, so my memory of it is a bit rusty. I think that after a while with a bag I relied on the valve and just emptied my bladder at the next convenient loo, more or less as normal. In spite of this, it was a pretty miserable time and saw almost anything as a possible improvement.

 

[AntarcticPilot]

It’s 18 years since I had to deal with one, so my memory of it is a bit rusty. I think that after a while with a bag I relied on the valve and just emptied my bladder at the next convenient loo, more or less as normal. In spite of this, it was a pretty miserable time and saw almost anything as a possible improvement.

I too have suffered acute urinary retention, which ended up with me having to have an operation to bore things out! But I well remember the inconvenience and occasional embarrassment of wearing a catheter. Thankfully the operation was completely successful and the underlying condition was benign. But I wouldn't wish urinary retention on my worst enemy. Having a full bladder and being unable to empty it is utterly horrible.

 

[johnalison]

I too have suffered acute urinary retention, which ended up with me having to have an operation to bore things out! But I well remember the inconvenience and occasional embarrassment of wearing a catheter. Thankfully the operation was completely successful and the underlying condition was benign. But I wouldn't wish urinary retention on my worst enemy. Having a full bladder and being unable to empty it is utterly horrible.

Dreadful, as you say. An E Coli infection with a catheter is similarly bad, and one reason to keep time with a catheter to the minimum.

 

[AntarcticPilot]

Dreadful, as you say. An E Coli infection with a catheter is similarly bad, and one reason to keep time with a catheter to the minimum.

Urinary retention is reputed to have killed Tycho Brahe, whose astronomical observations led first to Kepler's Laws of planetary motion and thence to Newton's Law of Gravitation.

As you say, prolonged use of catheters is inadvisable - but until my operation, I either had a catheter or was waiting for the next episode of urinary retention! And as they always had great difficulty passing the catheter, they had to allow time for any injury they might have caused to heal.

 

[oldmanofthehills]

Dreadful, as you say. An E Coli infection with a catheter is similarly bad, and one reason to keep time with a catheter to the minimum.

No doubt Sirona health will try and ring me and hopefully arrange a removal date. However it will no doubt be as I try and cross the Alderney Race or the Swinge, and they wont understand that I am not convalescing in Bristol and cant simply get taxi to their clinic

The sooner its gone the better though not entirely happy with idea of my newly prescribed finasteride meds to shrink prostate

And onto the next bit that no longer works right due to injury or decay

 

[mjcoon]

As you say, prolonged use of catheters is inadvisable - but until my operation, I either had a catheter or was waiting for the next episode of urinary retention! And as they always had great difficulty passing the catheter, they had to allow time for any injury they might have caused to heal.

I had a comment in my 2016 "Discharge Summary" (where "discharge" is as in discharge from hospital!):
"Prostatic mucosa thickening secondary to prolonged catheterisation".

In their jargon, my TURP was followed by successful TWOC...

 

[johnalison]

Urinary retention is reputed to have killed Tycho Brahe, whose astronomical observations led first to Kepler's Laws of planetary motion and thence to Newton's Law of Gravitation.

As you say, prolonged use of catheters is inadvisable - but until my operation, I either had a catheter or was waiting for the next episode of urinary retention! And as they always had great difficulty passing the catheter, they had to allow time for any injury they might have caused to heal.

I didn’t know that about Tycho Brahe. With the OP’s permission, I hope, I will drift into saying that I have visited Brahe’s place on Ven where there is a museum in his honour. I read somewhere that Brahe never saw the planet Mercury, which is sad, but gives me some satisfaction in having seen it several times myself.

There are several outcomes possible for those with a catheter. In my student days one of our chores was doing the regular catheter changes for old men who had no other choice. Since then the treatment for those with prostatic enlargement is much better, though that wasn’t my problem, and for those without a neurological disorder I would guess that most are effectively cured.

 

[AntarcticPilot]

I didn’t know that about Tycho Brahe. With the OP’s permission, I hope, I will drift into saying that I have visited Brahe’s place on Ven where there is a museum in his honour. I read somewhere that Brahe never saw the planet Mercury, which is sad, but gives me some satisfaction in having seen it several times myself.

There are several outcomes possible for those with a catheter. In my student days one of our chores was doing the regular catheter changes for old men who had no other choice. Since then the treatment for those with prostatic enlargement is much better, though that wasn’t my problem, and for those without a neurological disorder I would guess that most are effectively cured.

On two occasions I had the doubtful honour of my catheter being passed by a Registrar because the House doctor couldn't do it! I recall that on one occasion the "dodge" was to put the catheter in the fridge for a while so the plastic stiffened.

 

[oldmanofthehills]

My first catherisationast year was attempted by a nurse using the thinest one - no doubt she thought small tube up small tube. 2nd go was next size up and failed. Doctor manage 3rd go usinng largest which is 14 and it hurt but worked. He told his charges you just need to get job done and that means pushing

Camera inspection of water works showed scarring from that but happily no bladder cancer signs but small bleed from prostate

This time the first go was a male nurse using correct size but too tentative. The triage srn then took over and what a relief, but I am pissing blood and I expect there will be scarring

Still I didnt die like Ticho Brahe so all much better than it might be. Not nice way to die at all

Interesting about his museum. I lived 3 doors from the Hershel museum in Bath but what with children etc never went in when resident