Health Organization for Pudendal Education

Sunil,
You sound very tired and I understand that. Fighting for survival is what makes us human and adds an element of strength to our characters and souls. I think it would be fair to say that none of us expected to be chronic pain people. To have our lives drastically altered to the point where we now have new and different lives. Dwelling on the past; what should've been or could've been isn't helpful to adapting to where you are in your life right now. You can't move forward as long as you're stuck in the past.
I've noticed that you speak of your ex-wife a lot. She seems to be another regret you carry around with you. You mention her in almost all of your posts:

sunil wrote:I think of how my wife who I married whenI was in my 20's not knowing what was wrong with me apart from me being told I worry to much etc. I think of the suffering of my wife and how we parted what has happened to me.

I remember your post about meeting up with her last year and for some reason, I thought the two of you had come to some kind of peace. You're obviously still very much in love with her. So, I'm wondering if this is really about your physical pain, or the pain and heartbreak at having your marriage end so poorly? Would it be possible for you to contact her? Try to explain you really did and still do have a serious medical condition with which you are still struggling to obtain proper medical help? Perspectives and points of view can drastrically change when you're older and wiser than when you're in your 20's. It may not bring the two of you back together as man and wife, but it may bring you back together with some form of acceptance and understanding. Maybe even friendship?

sunil wrote:I think I will die with this injury I have very little money left for treatment, so I will give this one last try then bow out and say good bye to you .. there is no point fighting any longer.

No, Sunil. There will be NO bowing out or goodbyes. I'm surprised and disappointed to hear such a cowardly statement from someone I've come to admire for his strength and courage.
Is there nothing that makes you happy, Sunil? Nothing that draws your attention away from yourself? Some kind of hobby? A beloved pet that depends on you and loves you unconditionally? Or a place? The beach with it's soft sand and salty air? The sight and smell of delicately colored flowers and lush green foliage? The HOPE community? And here's the last one I've got up my sleeve: Have you ever tried "Happy Glasses"? They advertise them as "HD Vision Glasses" and when you put them on, everything is a bright, (sunny) yellow. Even when it's raining out!
There's ALWAYS hope, Sunil. I look forward to your reply.
Warmest of regards,
Karyn

Sunil

i have to agree strongly with Karyn, we have many of us been through what you have and have lost not only spousal support but also whole families in the process. This is a very difficult condition to explain to anyone and even people who are close to us it seems harder to explain that we are not the people we were once in previous times.
There are many positives however, and like Karyn there must be many things that can take your attention even for a few minutes like wonderful elements provided by nature, flowers, plants, sunsets etc. We really do have to search into our souls and take comfort in the simpler things in life....to look back is not good we all have to enjoy today and look forward to tomorrow as it may hold many wonderful experiences...who knows.
It is not hard to look forward but it is easier to enjoy now as it is each day...one day at a time...and you need to enjoy each day as it happens.

Please talk to us!!!

Amanda

sunil wrote:Is there happiness?

You must take responsibility for yourself and create your own happiness.

sunil wrote:Most of you have far more then I do so you are ok.

How do you know? What are you basing this statement on?

I am sorry you are suffering! You sound depressed and should go see a therapist to help you. I have a therapist and she has helped me cope with PN. I pray you get some help soon. God Bless, Missy

Sunil

Happiness is a very broad term, it covers many aspects of wellbeing. As a PN'er for over 8 years now I have had my times when I was not happy at all, however once I reminded myself that it was as easy to smile as frown, and only then did i take control of my own happiness.
For every negative there are always positives.....there is no magic formula or pill, but very simple things which can make anyone happy whether they have pain or not.
On grey cool windy days of which we have many in Ireland, even the plants are thriving and once the sun shines then you can watch the growth - that makes me happy; listening to birds chirping as they eat, breed and rest is a wonderful sound and very calming for me. None of these things help with my pain but i have accepted that at times i have to rest and these sounds and sights make it all worthwhile and I feel im recharging while resting.

So have you got sunny weather or grey today?

Dear Sunil,
If there are any people in the world who can appreciate what you are going through, it is us. Everyone here tries their level best to help each other.
You may hold the record for pn suffering, maybe we can only partially understand what you are going through, but reading through the posts that people have sent directly to you there is so much time, trouble and care in them, I hope you understand the wonderful sentiments in those messages. People care so much.
I know it is difficult to be open to just about anything, when your mind is clouded with pain and resentment.
Some days are worse than others . . . . . but that also means that some days are better. . . . . . . .
Here's to many more better days,
Cheers,
Helen

Sunil,

I am praying for you .

Hugs,

A's Mommy

Sunil

I was not trying to be patronising at all in my post, i was trying to make you see some brighter moments in every day.
Whether you have PNE for 1 year or more, it is a terrible condition to live with and has bad consequences in daily life; believe me i have lost so much and so many people who i loved dearly but who couldnt handle the limitations that PNE has made to my life.
I am hurting badly from this but now its my life and i have to get on with it for ME....only I can make it tolerable - living on ice most of the day and all night, taking some pills and not doing anything too strenous and being prepared for a flare up without reason.
I asked you about your weather as i find i feel much better when the sun shines and its warmer...today in my south facing garden it was 34C....a little too hot for even me but nonethe less it felt good to be outside.

We are all your friends here and are trying to help you.

Sunil
Hi there. I haven't been on for quite awhile due to moving and all kinds of bad stuff. One of those times, that if it could go wrong it did.
You live in a beautiful country that unfortunately does have a lot of clouds and rain. I get that. Here in Vermont USA we have 9 months of winter. The weather can sure bring you down, BUT you can get through it. PNE sure isn't easy on us and our families. Try looking at it this way. You're still here fighting the fight and she left. So you tell me who is the stronger of the two? YOU ARE!!
Now I know what you mean about the money being gone. We've learned to like eggs a whole lot more than before just to keep up with the medical bills. We are in the process of selling our home and renting with our son. That is NOT easy. Doesn't your country have some sort of help for the disabled? We have disability, which is a battle to get, but if you do get it, it helps. There are so many people on this site that have lost their homes because of the med. bills.
There have been some good days, pain wise, that I think I'm going to cancel surgery, but mostly bad pain days, like today, that tell me I've got to keep trying to find a way to live half way normal.
Sunil, please try to find a friend to call from this site. I'd give you my number, but the phone bill would be horrible. There must be another PN person on this site from Ireland.
Try to hook up and chat. Sometimes just having someone to talk to helps you get a positive outlook. Of course, you could always watch the news and see people from war or accidents, laying in bed as a vegetable. One day last year, I had a really "poor me" day and I stopped into a convalescent home to see a friend that's 15 years younger than me that had a stroke. She doesn't know her own children or friends. When I left, I did not feel quite as bad. Actually, I was kind of embarrassed with myself when I at least could get up and leave, even though I needed to take Tramadol to drive home.
Please hang in there. Look around for some financial help. Ireland must have something.
I'll be thinking of you.
My very best for you;
Doreen

Agreed Doreen, we all have our "poor me days", which is understandable when feeling sad and insular but there is a much bigger picture as you say.
I visit my Mam every other day in a care home, she has Alzheimers. She hasn't a clue who I am as the disease has stolen every memory and her speach from her. Onset was at least 10 years ago. There are several 'last stage' residents who can only lie, spasmed in their beds.
One new guy is only 4 years older than me, everywhere he looks there is a picture of what he will become. How sad is that. This disease costs an absolute fortune in care fees, because we can no longer cope with my Mam at home. There is no cure.