[Corbybird]

I have Axonal Sensorymotor Neuropathy and bladder problems. Yesterday I received training in ISC (intermittent self cath) after going through many other options.
I was okay with this when the specialist told me last week as she'd spoken of it as a possibility since I first saw her a year ago. I knew I'd tried everything else and was prepared. Until I came out of the training. It had gone well and it is not really any big deal but afterwards I, quite suddenly, went into a strange, low and flat, I guess depressed, mood. I'm still feeling that way today. I know it will lift because I am always a cheerful person but I want it to go now!
I haven't spoken to anyone since as I live alone. I know there are people I could talk to about it, and I want to but I guess I don't want to share my sad side and pull others down ..
I don't know whether to tell my adult sons about this. It's something they just wouldn't want to have to imagine lol. They would definitely make me feel better with their warm irreverence and constant joking but I'm not sure whether to go there.
I don't know whether this is part of the PN. I think it is and my urologist says she thinks so but can't say for certain.
Does anybody out there have to do this too? The nurse yesterday said I'll end up with a bag! Better be wrong about that!
Thanks for reading this. I probably just need to get it out.

[inspirations]

Good morning Corbybird.

I am so sorry you're having to deal with this. I, too, have Axonal Sensory Motor Polyneuropathy. However, it is new to me, though I've had PN for about seven years. I also have some bladder issues, but in my case, I'm pretty sure it's because I had four children.

This is only my take: I think you should talk to a friend about this, just to get the burden off your chest. And, having three irreverent and fun-loving boys myself, I would hold off telling them. My boys would always bring it up at the most inopportune (for me, anyway!) times. Instead of bringing others down, they might just bring your spirits up.

I know nothing about self-catherization, though. God bless you.

Originally Posted by Corbybird

I have Axonal Sensorymotor Neuropathy and bladder problems. Yesterday I received training in ISC (intermittent self cath) after going through many other options.
I was okay with this when the specialist told me last week as she'd spoken of it as a possibility since I first saw her a year ago. I knew I'd tried everything else and was prepared. Until I came out of the training. It had gone well and it is not really any big deal but afterwards I, quite suddenly, went into a strange, low and flat, I guess depressed, mood. I'm still feeling that way today. I know it will lift because I am always a cheerful person but I want it to go now!
I haven't spoken to anyone since as I live alone. I know there are people I could talk to about it, and I want to but I guess I don't want to share my sad side and pull others down ..
I don't know whether to tell my adult sons about this. It's something they just wouldn't want to have to imagine lol. They would definitely make me feel better with their warm irreverence and constant joking but I'm not sure whether to go there.
I don't know whether this is part of the PN. I think it is and my urologist says she thinks so but can't say for certain.
Does anybody out there have to do this too? The nurse yesterday said I'll end up with a bag! Better be wrong about that!
Thanks for reading this. I probably just need to get it out.

[Corbybird]

Originally Posted by inspirations

Good morning Corbybird.

I am so sorry you're having to deal with this. I, too, have Axonal Sensory Motor Polyneuropathy. However, it is new to me, though I've had PN for about seven years. I also have some bladder issues, but in my case, I'm pretty sure it's because I had four children.

This is only my take: I think you should talk to a friend about this, just to get the burden off your chest. And, having three irreverent and fun-loving boys myself, I would hold off telling them. My boys would always bring it up at the most inopportune (for me, anyway!) times. Instead of bringing others down, they might just bring your spirits up.

I know nothing about self-catherization, though. God bless you.

Thank you, Inspirations. Much appreciated. Your boys sound like mine. It's great to be able to laugh at yourself. And be laughed at by family! They are what keeps me sane. Well, and a few other things!

[inspirations]

My boys, especially (not my daughter so much), tease me unmercifully, but I love that they feel they have the freedom to do that. We all laugh about it; it's what keeps me going. I love the fun-loving interaction I have with my boys. I give it back too.

Originally Posted by Corbybird

Thank you, Inspirations. Much appreciated. Your boys sound like mine. It's great to be able to laugh at yourself. And be laughed at by family! They are what keeps me sane. Well, and a few other things!

[villier]

Originally Posted by Corbybird

I have Axonal Sensorymotor Neuropathy and bladder problems. Yesterday I received training in ISC (intermittent self cath) after going through many other options.
I was okay with this when the specialist told me last week as she'd spoken of it as a possibility since I first saw her a year ago. I knew I'd tried everything else and was prepared. Until I came out of the training. It had gone well and it is not really any big deal but afterwards I, quite suddenly, went into a strange, low and flat, I guess depressed, mood. I'm still feeling that way today. I know it will lift because I am always a cheerful person but I want it to go now!
I haven't spoken to anyone since as I live alone. I know there are people I could talk to about it, and I want to but I guess I don't want to share my sad side and pull others down ..
I don't know whether to tell my adult sons about this. It's something they just wouldn't want to have to imagine lol. They would definitely make me feel better with their warm irreverence and constant joking but I'm not sure whether to go there.
I don't know whether this is part of the PN. I think it is and my urologist says she thinks so but can't say for certain.
Does anybody out there have to do this too? The nurse yesterday said I'll end up with a bag! Better be wrong about that!
Thanks for reading this. I probably just need to get it out.

Sorry to hear you are feeling the way you are, I know exactly how you feel I have been catheterising for aout two years now I have small fiber sensory gaglionopathy with a few autonomic problems going on one being the bladder, if you need someone to talk to that understands feel free to PM me I am a good listener and I know what you are going through xx

[Corbybird]

Originally Posted by villier

Sorry to hear you are feeling the way you are, I know exactly how you feel I have been catheterising for aout two years now I have small fiber sensory gaglionopathy with a few autonomic problems going on one being the bladder, if you need someone to talk to that understands feel free to PM me I am a good listener and I know what you are going through xx

Hi Villier,

What does PM mean? Thanks for your response.
I've just been on 2 weeks hols (I work in a school) & work started back today. Everyone was asking each other about their hols. What was I to say? Seven of the 9 working days I had were spent doing medical stuff and I learnt how to self-cath? Lol. Yeah, I wasn't in a laughing mood and my foot pain was so bad I barely made it home before bursting into tears. And that was a worry because the kids aren't back at school yet. I just sat on my backside all day!
Just now I went to take my evening meds & realised I hadn't taken any this morning! Problem explained. I hope. Though every working day is a huge struggle.
How long did it take you to come to terms with the catheterising? I think my neuropathy has autonomic aspects as well, though that's not diagnosed. I have dry eyes, dry mouth, I don't sweat, have heat/cold problems and the bladder problems. Some dizziness. So tired now...

[villier]

Originally Posted by Corbybird

Hi Villier,

What does PM mean? Thanks for your response.
I've just been on 2 weeks hols (I work in a school) & work started back today. Everyone was asking each other about their hols. What was I to say? Seven of the 9 working days I had were spent doing medical stuff and I learnt how to self-cath? Lol. Yeah, I wasn't in a laughing mood and my foot pain was so bad I barely made it home before bursting into tears. And that was a worry because the kids aren't back at school yet. I just sat on my backside all day!
Just now I went to take my evening meds & realised I hadn't taken any this morning! Problem explained. I hope. Though every working day is a huge struggle.
How long did it take you to come to terms with the catheterising? I think my neuropathy has autonomic aspects as well, though that's not diagnosed. I have dry eyes, dry mouth, I don't sweat, have heat/cold problems and the bladder problems. Some dizziness. So tired now...

Hi Corbybird

PM means private message, it was just in case you wanted to ask any questions that you didn't feel comfortable asking on the thread. It probably took me about six months to come to terms with the cathetering and remembering to carry them with me, it was such a bind to start with but now it is a way of life and I don't really think about it anymore well not very much.

You say you have dry eyes mouth don't sweat and dizziness, have you been tested for Sjogrens Syndrome? all classic signs of it, I also have the dizziness and have just started taking steroids for it apparently it is down to a hormone which I haven't got all the details yet as there has been a mix up at my doctors surgery.

I also get the heat/cold problems, I can't stand going out in the wind or having the sun beat directly on me as it flares everything up, I only have IVIG every three weeks as all the neuropathic meds I have tried in the past either didn't work or they gave me horrific side effects it keeps my pain bearable at rest, result is I now can't work, even dressing myself or standing on my feet exacerbates the pain, I hope at least the meds you are on is helping with your pain.

If there is anything else you want to ask I will gladly try and answer you, I am surprised though that your neuro hasn't sent you for tests for Sjogrens if I was you I would maybe ask him what his thoughts are on your symptoms.

I hope you have managed to get a rest and are feeling a bit better...........tc............xx

[dac122]

Hi Corbybird,

Sorry you are feeling down about this subject. I hope you feel better soon. If you feel the need to talk to someone do whatever feels most comfortable but please do find someone.

I have a daughter with Spina Bifida and we have done the 'cathie' with her since birth. She is 5 and is super proud about doing it herself now. We even wrote a kids book and published it up on Amazon and we are donating the proceeds - what little there is. My wife is the expert but I have learned a bunch about it. If you want to learn lots of technicals on this subject you should go here http://spinabifidaconnection.com/ for more.

As far as the nurse's comment about a 'bag'; it sounds like she is referring to a colostomy bag. If that is the case that is old school and rarely ever used anymore. Unfortunately most medical professionals are hopelessly out of date on this subject, so just ignore that comment.

Feel free to PM me.

[Corbybird]

Wow, Dac, that's amazing! Thanks for the info and link. I'll check it out. Your daughter sounds like an amazing little girl and you must be proud of her and all you have done, not just for her but for others.
I'm starting to feel a lot better now, a week or two later. I knew I would but it was a terrible feeling. I know now how it feels for those with depression, it gives me more understanding.
Villiers: I have been tested for Sjogren's. Multiple negative blood tests over many years and 1 1/2 years ago, a negative lip biopsy. My neuro sent me for Sjogren's testing then mentioned neuropathy -no tests- and spoke of middle-aged women who come in with these complaints. Suggested I see a psychiatrist and chronic fatigue specialist! My new neuropathic neuro (haha!) said that's called seronegative sicca syndrome which, when googled, usually comes up as Sjogren's, so it's confusing. And when you research neuropathy, the same symptoms come up under autonomic neuropathy. More confusion. But that's the story with neuropathy...

[dac122]

Thank Corby. I see I made a mistake above. I meant to say *urine bag* which can be used after surgery but not typically day to day unless you are wheelchair bound perhaps. Definitely check that link. There are so many helpful folks there.