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All aboard the Seafour tour bus #2

999 replies

Seafour · 12/12/2018 20:12

A new thread for us

Old thread in HDU with respiratory failure and terrified

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16
Crownandheelshigh · 31/12/2018 21:45

@Seafour

Just a quick side note but what about using an intermittent catheter into a jug (separate one obviously) then dh can dispose?

That's how my nurse suggested to do it when I had my first round and couldn't "aim" 😂

Seafour · 31/12/2018 22:18

Crownandheelshigh honestly dh can barely walk so adding in numerous trips to the bathroom to empty receptacles would be cruel. If I wasn't able to shuffle myself up the bed when it's tilted I'd be back in hospital.

I know what you mean about people finding choosing to use catheters weird, I was put under so much pressure to have a superpubic catheter fitted. I just didn't want to have to carry a bag of piss around with me all the time and have that influence how I dressed.
Because of the AFO splints I wear for walking I have to wear leggings, so wear would the bag go? The answer was "you can use a belly bag" That was it for me, I will carry on doing my one handed self catheterising, thanks very much. I do use an in dwelling catheter overnight simply because my three paralysed limbs are splinted and it would take ages to get up and go during the night.

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Crownandheelshigh · 31/12/2018 23:10

@Seafour

Sorry that was baby brain speaking haha,

Nah I don't blame you. They offered me a in dwelling one aswell but I refused as I'd rather do it intermittently then explain why at 21 (a year after I was officially diagnosed) I was walking round with pee attached to me.
I will eventually have to have one for good tho but I'm not worried as it's improving the quality of my life and now my sons.

Wonderful things tho and the work place I was in before/during my pregnancy were amazing with it, even when it got harder when pregnant.

Mini crown did decide to steal one from the bathroom the other day and I found it in his toy box. 😂

yawning801 · 31/12/2018 23:14

I had a catheter when I was in hospital for my fusion, and that was really when I realised that I had 0 dignity intact. I really feel for you both, they're certainly... interesting, at times.

Costacoffeeplease · 01/01/2019 01:21

I had a catheter post spinal op - have to say I loved it and would gave kept it forever if I could

Seafour · 01/01/2019 11:37

Costa, trust me you wouldn't have wanted a catheter forever! Being able to take a piss when you need one is one of life's most underrated pleasures.

Well dh still can't bend, move, walk without grimacing and is using the lift instead of the stairs. So I'm facing another day stuck in bed with no physio. Roll on tomorrow and the carer arriving, I hope she's prepared to hit the ground running.

Happy New Year Buslings

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Schuyler · 01/01/2019 11:45

Hi Seafour, firstly, happy new year. I hope2019 is kind to you. I know it’s not going to work now due to your DH’s back but you can get bags which attach to the catheters which means you don’t need to transfer. Some mobile people even self cath on the bed because it’s easier. Also, you should def continue to self cath if you can but if you did reach a point where you need a suprapubic cathter, you don’t need a bag. You can get a valve and just empty on a schedule or when you want to. I’m awaiting the op for a suprapubic and I’m gutted but my urologist said I can have a “flip flow” valve. I can recommend a really great Facebook support group if you want? :)

Seafour · 01/01/2019 14:03

Schuyler thanks, definitely pm me with details of the fb group.
My biggest problem with catheterisation at the moment is being able to reach!! Because my body is so much longer than it was and with my spinal brace on I simply can't reach.
Anyway I've actually taken the indwelling catheter out this morning as the site was looking a bit sore, so we will see how things go.
Luckily DH is a dab hand at catheterising me so if I can't manage he will do it.
I do have some catheters with bags that I keep for using in the car.

I'm pleasantly surprised that there are a number of us with major bladder issues on this thread, it's something that so many women suffer in silence with.

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yawning801 · 01/01/2019 18:15

Sea Was your spinal surgery for scoliosis? If so then there's a facebook group for that too, if you want to join then let me know.

Seafour · 01/01/2019 21:00

Yawning yes it was for scoliosis, it came completely out of the blue after I had spinal surgery in 2015 to stabilise my lumbar spine and untether my sciatic nerves. I developed a double curve scoliosis that was moving rapidly. It was probably caused by the connective tissue disorder that I have but that was only diagnosed a few months ago.

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yawning801 · 01/01/2019 21:19

Join the club! I only had the one curve but it was increasing very fast (think ten degrees in six weeks) so they were eager to get in there ASAP. I think mine is genetic on my father's side though. PM me if you want the link to the Facebook group

redastherose · 02/01/2019 00:38

Happy New Year @Seafour and everyone else on the bus.

DMCChristmasCakes · 02/01/2019 11:23

Happy New Year buslings!

Get well soon @thefabulouspa

How's the new carer doing? Do we get to meet them?
I'm sure I have some leftover panettone round here somewhere...

bexcee · 02/01/2019 15:19

Happy new year everyone. Hope 2019 brings us all happiness, good health and peaceful lives.
@Thefabulouspa sorry to hear you're not well not you soon make a full recovery
@Seafour hope your new assistant is proving to be an asset. Hope your Dh's back is soon better and that he listens to you in future!

bexcee · 02/01/2019 15:19

Not = hope!

Seafour · 02/01/2019 15:52

Hi Buslings, New carer arrived today, she is no fabulous but she's a supplement not a replacement although right now she is it, Dh is still suffering with his back, so much so that he's going to the doctor this afternoon, although he could only get an appointment with the nurse.

I've had a day of peeing in a commode next to the bed, it was just the incentive I needed to get me transferring from bed to wheelchair and into the bathroom to use the toilet. I can almost get myself back into bed independently which is the next piece of the jigsaw.

The difference having a carer here will make is going to be to speed up my rehabilitation, at least I have a second person here now who can help me mobilise although I do worry about her fitness level because it's always an unknown with someone new. She's very nice and very experienced especially in rehabilitation so I have high hopes. I don't think she will become part of the inner sanctum immediately but maybe in time she will.

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2018SoFarSoGreat · 02/01/2019 19:28

Happy new year Buslings and dear Sea

Returned to work, and the kitchen is just full of the most ridiculous array of good stuff - chocolates (enough for the buslings, the street and two small villages), cookies, cake, croissants, candy. It is too much for us to get through, so shall bring it on board once I secure a wheelbarrow :)

Seafour · 03/01/2019 14:23

Hello buslings, all around us the world is returning to normal, people are going back to work, visitors are going home and a new year has begun.
I feel as if dh and I are in a bubble, a kind of altered reality, dh is rarely ill he has a couple of bouts of man flu a year but to see him suffering so much pain from his back is hard for me and he isn't getting any better. He has done an online food shop for the first time ever and has agreed to me posting a request for dog walkers on our village fb page. Meanwhile the new carer has had to hit the ground running and I think it may have come as a shock but she's coping admirably thus far. I really miss the easy friendship of my relationship with fabulous, she really is one in a million.

I hope my buslings will drift back to the bus now that Christmas is over for the next exciting phase of my recovery, my physiotherapist came to visit today. It was lovely to have someone who is as excited about my new lumbar curve as I am, she said she really wants to do some work on my bottom, which would sound so wrong from anyone else but she thinks it has huge potential.

Today I'm feeling very optimistic.

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Retreatbynameretreatbynature · 03/01/2019 15:30

Hi Seafour - Happy New Year to you and your DH. Let’s hope that 2019 sees you getting stronger and able to enjoy life without so many struggles that you are facing. I hope that the physio can help you, it’s good to hear she shares your positivity about “bottom potential”!!

I’ve been following your thread and have been amazed by your courage, humour and determination. You are amazing. 🌸 My life is stressful in a different way, I have chronic pain, SN children and a DC with MH problems so life is far from easy. But I wanted to take the time to say you are often in my thoughts and I wish you and your family all the best.

2018SoFarSoGreat · 03/01/2019 15:48

Oh yes. Work on your bottom could be taken off so very wrong 😁

It is a cold and sunny day here. There are amazingly few passengers on my train, which makes me very jealous of those still on holiday. I find I miss my lovely DH, after spending 11 days together. It bodes well for retirement if we can get along just fine, him doing his thing and me mine. Thank goodness we each have interests that mean we can occupy time alone yet enjoy each other when we like.

Sympathy to your DH. Have been there with the bad back and never want to go there again 😟

Seafour · 03/01/2019 17:27

Retreat thank you for delurking, you're life sounds every bit as challenging as mine, everyone is encouraged to share their problems, frustrations and pain on the bus.
I always say that if you took ten people with challenging lives and gave them the opportunity to exchange problems with each other they would choose to keep the problems that they know. We just adapt don't we and then get on with it.

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WheresTheCoffee · 03/01/2019 22:39

Happy New Year all, glad to hear you've got some support at home @Seafour. Sending get well wishes to your dh and Fabulous!
My office went back yesterday but I'm off with the DC's until they go back next week and I'm trying to make the most of it whilst also recharging a bit. We went geocaching for the first time this holiday and had a blast. We're going to make one to add to the local route. Have you tried it?

Andro · 03/01/2019 23:29

Optimistic is very good, but an excited physio can be a very scary creature indeed - I'm not sure whether to be pleased or worried on your behalf!

I'm firmly back on the bus after dealing with hospital incompetence; everything has been resolved to my satisfaction, but there are few unhappy suits because the cost of me ensuring that their screw up doesn't get back to the CQC is some very expensive (but imo necessary) training. Sometimes it's useful to be able to have your solicitor on speed dial!

You have had a very cute, but very naughty, ginger and white cat perusing your posts...she must have snuck onto the bus and noticed me sneaking lola a few lots of treats!

NancyWho · 04/01/2019 11:36

I'm still here sea, I've been out of action with the lurgy for a few days.

Sounds like your spare carer will be good when she's trained up and it seems you're making excellent progress.

I'm off to soft play with a friend's DC today. Can't wait to see them but aargh it'll be noisy.

gruber · 04/01/2019 15:09

I’m still here Sea. Glad to hear you have some help finally. Hopefully if she is experienced she will be a useful pair of hands. How is fabulous doing, hope she is ok. Thinking of her (and you). I had an incentive to get up and mobilise, baby clinic was yesterday afternoon. Even though I felt awful on a few hours sleep and had to take DS as well as baby Rupert I managed it! Walked 1km there and 1km back. I am pleased to say Rupert is getting bigger, up to 8lb 13!
Can anyone pass the panettone/croissants/tea please?! Night feeds are exhausting. If you’re up in the night I’ll usually be around! Not usually with it enough to post though.