Admitting It Is Rough

[Guest tearose]

Okay, so I am still in the potshole. I have my warming vest, my prayers/meditations, my water bottle and electrolytes, some healthy foods and snacks, my compression and my seat cane, my diaper bag/tons of wipes, some nice music and a pink rose, some lace doilies and some tea, a comfy soft blanket and pillow...and made myself comfortable..but I do some activity so I do not get deconditioned...but that is all I can do.

It seems my life is all about just getting my body able to get washed, compressed, dressed, balanced enough to walk a little, feed myself do one thing and then my day is over and I try to go to sleep.

Are they really doing research into this? I swear I feel like it is like we must have a tiny kind of stroke and have to relearn everything and then after weeks or sometimes months...we can be somewhat human again.

I think it has been a new level of low for me because I recently have had major issues with both kinds of incontinence. I have felt the lowest self-esteem because of this. I think...well, do I have any dignity left? Pretty sad when the brain wants to do things, the spirit wants to give and do for others and the body just does it's own funky thing. I feel like my body needs to be smacked back on track...like it is stuck in the spin cycle and oh, well...just venting I guess...

I was meditating on the word hope. I came up with this...

H=Happy

O=Optimistic

P=Postiive

E=Expectations (changed)

Then I decided to change the E in Expectations to E for ENERGY. I think I am stuck on the word expectations. There is where I may be falling into trouble...I think it is unhealthy to have expectations...maybe it is more gentle to put energy there but not set myself up for not reaching a goal/ expectation.

Okay so ..

E=Energy

I do these kinds of things to keep my mind and sprit going.

thanks for listening.

Reporting to you from the lovely decorated potshole...

tearose

[pat57]

I think your on the right track but suggest Enjoy.

You can enjoy many things still, a breeze, a book, many things really. So enjoy what you can to the fullest.

You are as important as any "other" ,it is time for you to give and do for yourself.

I have 4 organs sagging and need surgery, so I understand the indignity also.

I said to my Dr. I'm disgusting. Poor guy- he did feel bad for me. I don't want the surgery for fear of more neuropathy.

[corina]

tea,

i know where you are and i know how you feel. even with the incontinence, you describe what i feel/have felt. do i have any dignity left was (and sometimes still is) what i've thought. i had to be very very optimistic to find it back. and then expectations, i don't know why i still have expectations and i struggle with that so often but i think it is in my genes (don't know the word for it, sorry i mean being optinmistic must be genetic or something). there are a lot of times that i have nothing to be optimistic about and then again: ther is always something to be optimistic about. i'm sure you know what i mean.

i think you need more time to get used to live at (again) a lower level. i am sorry you've come to this point. all i can say is: we are here with you.

love,

corina

[Guest tearose]

sure is uplifting to see the universe respond...thank you friends.

Pat, I do understand where you are at. I had to endure the whole pelvic collapse once already. (think they called it a six pack and I had to do other stuff too.) Yes, I did a 7 (seven) hour pelvic reconstruction surgery only a few years ago! I don't think I should be in such a state bad this soon! But I must just face it, I am. Do a lot of research before you decide too. Maybe there are better days ahead again for me with the pelvic muscles. That is one of my questions about POTS and muscle or connective tissue maybe we are more likely to collapse as we age with POTS? If not, why am I so fallen and neurogenic? I have never been dx with connective tissue issues but OBVIOUSLY I am one loose goose!

I like E for Enjoy much better. That is a good fit!

So it now is Happy, Optimistic, Positive and Enjoy.

yes corina, I have been learning over weeks it seems, to learn to incorporate a new level of function/dysfunction. I suppose it is healthy to be a bit glum and frustrated about it...I am only human... I guess I am sitting on the line, the very thin line between the spiritual acceptance of what is and the very physical awareness of another loss. I still think there is some muscle or tissue fatigue that is going on...oh well, thank you for reaching back to me.

tearose

[Mrs. Burschman]

Tearose,

We're here for you! So make a little extra room in your potshole for friends!

Amy

[morgan617]

Well, I peed myself for the first time yesterday....it was humiliating. It was just a bit and I didn't even feel like I had to go, in fact, it was after I had just finished going. I think there can be no mortification left and blammo, here's bummer time.....

Hubby has had to help me in the bathroom and I think, what else. Then the bank called today and said my signature had changed and I needed to come in and fill out papers verifying it was my signature (I also got a voter thingy back, saying the same thing)

I hear ya tea. I think my word has become resignation. A bit depressing I guess, but I don't get so angry and waste energy on it like I used to. I love the words you came up with for hope. At least it's not hope-less. There with you enjoying the tea and company.....hugs, morgan

[runningshoe]

Pots friends,

When your most basic functions, breathing, standing, peeing, etc. are compromised it undermines your whole state of being. Who am I if I can't breath, stand, walk, sleep, use the bathroom, etc....

I want to be free of these limitations and trust that my body will carry me through this life. This is a lonely illness because unless you have ever had trouble standing, breathing, (keeping blood flow to your head!), you just can't understand how basic these functions are. I see healthy people complaining and I want to say knock it off, at least you can stand in one place when you need to! I have three kids so I am grateful that I can still do as much as I can. It is never enough. I am realistic but still hope for improvement.

So, Tearose, from my home to yours I send you understanding and healing wishes.

Lina

[Maggy]

Hi Tearose,

I have just written one long reply , went to send it and the computer crashed but here goes again.

I just wanted to let you know that i understand what you are going through.

I am 37 and for the last year i have also been suffering from both types of incontinence.

I was offered a full time carer for domestic,personal and social care which i accepted gladly but i still struggle to ask for help with personal care, i would rather struggle, Pride just seems to get in the way.

One way of trying to come to terms with this happening was to think of many other people who are a lot worse than me and many of those can not choose to do their care themselves at all ,they don't have a choice.

The second way was to choose good protection so that if or when the inevitable happened at least it was not going to go through to my outer garments and at least it gave me a bit more confidence that every body else in the world didn't have to know about this.

It also enables me to be able to still go out on the odd days i am well enough and my carer can take me.

It is easier said than done to look on the positive side, but from reading your previous posts i feel you are a very strong person deep down, i am sure after a bit of time you will pick yourself up again and fight back to enjoy the many things you are capable of enjoying.

Hope you feel a bit better soon, take care...Maggy.

[Guest tearose]

Yes Amy, join the group. Maybe we can cry and laugh and catch that moment of peace together. I don't want to feel alone in this.

morgan, sorry you had the accident. I hope it is only temporary loss for you/us. I do still hope that in time our pelvic muscles will grow stronger again. There is that hope word again...

I think resignation sounds firmer than acceptance. It sounds harder for me to become resigned than to learn how to accept. Well, I can't seem to do either right now. I am ruminating. I think I have a fearful edge and I better stop it before I irritate my husband to the point of no return.

Thank you lina, Do you ever fear that your family, husband especially will become so tired of you and your issues that you will loose something there too? I am in such a weak place right now. I think what is he going to do with a broken wife like me?

That is good you have help to care for yourself when you need it Maggy. Bless you for trying to be independent and bless you for being able to reach out and get help when you must. I don't know if it is bad to have pride, it is close to dignity. We must just redefine the way we think of ourselves. I'll meditate on pride and dignity today. You gave me more to think about. Thank you. Do you have a partner? How do you deal with your loss of womanly independence and your spouse?

I have started to fear and probably foolishly, but it is real...that my marriage will suffer if I loose anymore of me...it is now time to do some serious growing and figuring stuff out.

Anyone have any ideas or reading suggestions?

I know on some level I will have to sit and have a long conversation with my husband about my fears. I am far from being able to do this now. I have to figure myself out first.

I need the living with chronic illness and maintaining a healthy marriage helpbook.

tearose

[Gena]

Tearose,

I am sorry that you are in such a deep place right now physically and emotionally. I understand completely about the FEAR part and worrying how the illness affects the marriage. I live that every day. I hate to express any of my fears to my husband.

In regards to your statement about "I need the living with chronic illness and maintaining a healthy marriage helpbook. "

I have not read any books specifically on that topic, but I'm sure someone on the board has.

Maybe after we ponder, meditate and read some books to gain further understanding and insight about how to deal with this, then the "E" can stand for "enlightened!"

I hope you have a blessed day.

Hugs,

Gena

[Maggy]

Hi Tearose,

I had to respond just to let you know that i do havea husband and four teenage children, we have been together for twenty years and yes this was the hardest part for me to deal with, athough my husband could not have been any more supportive if he had tried.

As you can probably imagine that made me cry about things all the more because it seems harder for me to deal with anything when somebody is being nice.

I still feel that the incontinence makes me less of a woman and yes it has come in the way of our close time together, but that is down to me.

I agree with what you are saying it is very hard to deal with, the only thing i will say is you do learn to accept it and work around it, it does take time and even now there are many days especially when I get low that it is still very hard to deal with.

I know in time you will focus on all the good things that you do have in life and that will be enough to overide the fact that you are struggling with other problems.

I hope you feel better soon and feel free to PM me if you want a chat.

Take care.

Maggy.

[Guest tearose]

So just when I was ready to give in and sit in a corner to pout....

My dear husband, obviously more intuitive than I recall, , walked in the door from work last night, with a bouquet of flowers for me!

How did he know? All my wild imaginings seemed to melt in that moment I saw his loving smile.

I feel very motivated now to do what I can to preserve all I can and to vow again to just keep doing my personal best. Knowing, we are in this together. He is not going to trade me in for a "better" one...he continues to choose me. I think the "enlightened" part is to remember that fatigue and struggle do bring out the worst of fears and that with time, work and support...it can be turned around.

I truly am blessed.

Thank you dear friends.

I will still work to adjust to the challenges but my heart feels light again.

I think I would change the meaning of hope again now....

H is for being HERE in this moment

O is for being OPEN to new ways of viewing or thinking about things

P is for being of POSITIVE frame of mind and reference

E is for the moment of ENLIGHTENMENT ...from which all true reflections emanate.

Thank you peeps...

lovingly, tearose

[pat57]

That is great news.

And I really like the HOPE acronym.