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Good and bad news

Hi all

Hope today is being kind to you all.

The postie has been and good news I have been awarded PIP enhanced rate for an ongoing period whatever that means.

Had an appointment with the continence nurse and have been informed that now I must do ISC and she will come beginning of June to show me. Can any of you ladies please reassure me as I am slightly panicking here just thinking about it.

Pam x

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Hi Pam, The weather’s still glorious out there but I’ve just got out of bed “again” as that foe of mine fatigue hit me hard earlier :-/ That’s great news about you being awarded PIP, and the enhanced rate too. I think by ‘ongoing period’ that they mean until next time you’re assessed. Sorry but I can’t help you with ISC but I’m sure one of the other lovely ladies on here will help you :slight_smile: Take Care Twinkle Toes x

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Hi Pam,great news regarding the PIP award,cant help you regards the ISC,but im sure there will be some that come along to help you. J x

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Excellent news about the PIP Pam. Well done.

ISC is so much easier than you fear. A tad embarrassing when you first start. Being shown how to put a plastic tube into your urethra is not something you want to do everyday!! But actually doing it is not so scary. Be prepared to throw plenty of catheters in the bin when you start as you miss the correct spot!

If you can, have a look in a mirror ‘down below’ in advance of the nurses visit just to familiarise yourself with where everything is and what the urethra looks like. It’s shameful to admit that I had no idea where I was aiming for and what it might look like when I started, a bit more than six years ago.

Good luck.

Sue

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Hi TT

Yes our weather has been so lovely, but like you, the heat makes me feel washed out and the fatigue plays havoc.

My neighbours love it and are out in the garden while I am watching through the window, but I still see the flowers and hear the birds, which is great.

Take care

Pam x

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Hi Mrs J

Yes it is good news and I am so relieved to hear, it’s been awful keep watching and waiting for the postie.

Take care

Pam x

Hi Sue

Thank you so much for your reassurance, much appreciated. Like you my biggest fear is not knowing where the right place is and not being able to find it, especially with a tremor, but this option sounded better than having a permanent one. I will take your advice and try to discover it before they come, doesn’t it sound silly to get to my age and not know what it looks like!

Anatomy wise it must be so much easier being a man.

Thanks and take care.

Pam x

Yay, that’s what my las PIP letter said, a relief in many ways.

I can’t offer any help on ISC, the thought still scares me as with poor eyesight and tremors… but I’m curious to know how you get on so please let me know.

I randomly discovered a new position that seems to help voiding my bladder, so I’m hoping that’ll help for a bit. Good luck

Sonia x

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Hi Sonia

Thanks, will let you know when I have tried, I have been struggling with retention for quite a while now, so I have to give it a go.

Take care

Pam x

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I always thought that men have an easier job anatomy wise, but I’ve been put right. Not only do they have further to thread the catheter (which actually sounds worse than it is), they have to kind of ‘force’ the catheter past the prostate. So easier and yet more difficult.

What I do think makes life more difficult is that we just don’t know our own anatomy. So it doesn’t sound silly at all, it sounds utterly normal to me. I remember having two nurses here when learning how ISC was done and I was trying to poke a catheter somewhere in the right area sitting on the loo. I had basically no idea what I was trying to do, no idea what it would feel like if I hit the right place, and adding to my discomfort, 2 nurses who I didn’t know well watching me.

Eventually, we moved to doing it on the bed and even the nurse trying to thread the damn thing in took a good number of catheters (I suspect she was a bit rubbish as I’ve had other nurses thread a catheter into my urethra with no problem).

I then had a couple of months of attempting to do it sitting semi recumbent on the bed with a mirror, using a catheter with a bag attached. Sometimes it was easy, other times harder. At that point I was capable of doing it sitting on the bed with knees bent and looking into a mirror (there’s no way I’d be capable of that now). Eventually, I decided to just sit on the loo and give it a go. By that time I knew what it looked like and felt like. And was amazed that I got the first catheter in straight away. Ever since then I’ve been able to do it without looking. Sometimes I still have to chuck a catheter or two away as I slip with my hand and touch the wrong spot. But generally it’s OK. And I’m mostly infection free.

Shame really that I’m having a Mitrofanoff procedure this summer. So I’ll be using ISC in a completely different way. Future proofing my bladder according to my MS nurse!!

Sue

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Hi Sue

Thanks, the nurse coming I have been seeing for quite a while, as I have been putting this off for as long as I can, so I do know her, which I am pleased about.

She said she would bring different ones to try and has said we will try different positions, so we shall see if I can do it or no not.

Take care and I wish you well with your next procedure.

Pam x

Hi Pam , it’s easier than it sounds. I had to use catheter after my last botox procedure . I felt embarrassed at first and my continuance nurse wasn’t great . I was basically left to get on with it. I got my advice from here. One of the members private messaged me. I also rang the continuance line and received a brilliant mirror . It was very small a bit like a miniature side mirror on a car , it was weighted by a ribbon and a stone at the end . The idea was you positioned it on your thigh and it meant that you could sit on the loo and wee instead of the shower floor. This gave me freedom to go out. I have a radar key and disabled toilets are usually a bit cleaner as no Tom, Dick or Harry can use them. It’s very important that it stays clean and usually you are provided sterilized wipes and bags as well as the cathertas. I’ve had a couple of infections it’s just unfortunate that as clean as you are you are more likely to get infections. Don’t be too worried ,just remember what it was like using tampons as a teenager I thought I’d never master that one. Take care Michelle and Frazer xx

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Hi Pam,

SO very pleased re your PIP results!

I had several sleepless nights before my appointment for the continance nurse to show me how to catheterise but in actual fact it was easy, they are very good at putting you at ease! Hope it goes well for you Pam.

Biotin has actually improved my bladder and I no longer need to catheterise.

Take Care,

Nina x

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Oh thanks Michelle I am going to try really hard as this has got to be better than a permanent one.

Hope all is ok for you and the mri was ok, take care.

Pam x woof to Fraser

Hi Nina

Yes I am pleased that pip is finished, well for this time anyway.

I am going to try hard with a catheter as I feel it is the best option for me, just hope I can do it, fingers crossed.

Hope you are doing ok Nina, Dr. Martin said he would talk to me about biotin at my next appointment, interesting to see it works well for you.

Take care

Pam x

Hi Pam,

Still lovely weather here but totally draining :frowning:

So glad to see that you got a number of replies with lots of support and good advice from others on the forum either going through or been through the same thing.

Take Care

Twinkle Toes x

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Hi TT

Thanks, this forum is fantastic, always help, support and advice, good to be on a forum where we are all in the same boat.

Pam x

Ive ended up with a supra pubic catheter probably for about 4yrs now it although scary at first it is so much better for me.All though ive had a few water infections touch wood ive been fine for the last couple of years. We have to have whatever helps us even in small ways. I hope you manage your isc ok with practice. Take care jo xx

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Thanks Jo I am going to give it a good try and see.

Hope all is ok for you, take care.

Pam x

Hi Pam,

I totally agree with you about this Forum being fantastic as I’ve had some great advice off some lovely people who know what I mean, or what I’m going through I just wish I’d plucked up enough courage to join sooner.

Twinkle Toes x

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