Too late
 

I feel pretty vulnerable posting this but what the heck. I want to live so much but not like this. I feel like I've messed up my whole life. I thought I had more time. I was only 45 when this illness hijacked my life. I feel like I've messed up everything and now it's too late. The pain from the illness i have has been completely treatment-resistant as far as medications go. Everything else I've tried (exercise, diet, etc) has barely dented it. It's just marched over me steadily progressing no matter what. And now my life is pretty hellish most days. This isn't a life, just existence. I'm so tired now, I haven't got any fight left in me.

:hug: for you.

I second Lara's :hug:.

I'm sorry you are dealing with so much pain and struggle every day. That would wear anyone down.

Know that you are in our thoughts and prayers.

Never too late
 

Never too late my friend....writing this with one finger while laying on my side on the bed :eek:

Switching pain meds is not fun at all.

Did u find someone to talk to about your feelings?

Wish u were here and we could find someone to see back to back and then figure out how to get there !

There has to be something out there to help with your pain. What does your Doctor say?

I am so sorry you are feeling so badly.

Here are some big hugs for u ! :hug: :hug: :hug:

Your friend,

Debi

For one suffer
 

To another
I know exactly how you feel
YOU are NOT ALONE
Coming here is my only comfort
There are awesome beautiful emphatic people here
Keep sharing
Let us hold you up
As I need it also
Love
Me

You are never alone on the NT forum. Usually matter what time someone somewhere in the world is there to reach out to. I hope you are on track to finding some answers for your pain. Sometimes it is relentless I know, but sometimes, rare as it is, it lifts a little. Those moments are treasurable and something to look forward to.:hug: I'm sorry you are feeling this way, please let us know if we can help.

hi thank you everyone for your thoughts and your support. it means a lot to me. I felt a bit silly the next day when I read what I'd written. I seem to say the same thing over and over I guess I do feel really frustrated. I, like many of you, have invested so much time and money trying to get better or at least improve and no matter what, things don't seem to get better.

I like the quote that you remember what life was like before. I find it hard to remember. But one moment for me this week was I went and swam at the local pool and the moment I'm in the water all the pain goes and I can even swim. Even though I'm very weak now I managed to do 6 lengths and I felt the way I used to and my body was free. I can only go fortnightly because of the chemicals but every time I came up for air I had a grin on my face ( :

It's good to hear back from you.

Water is wonderful therapy that's for sure. I'm glad you were able to get to the pool and feel that calming relief even for a moment. Take care there.

Like yourself
This is when my body feels its best
I am so looking forward to the pool
Members we always are
BUT YOU ARE RIGHT
YOU HAVE BEEN THE ONLY PERSON
here to mention that
It is the weightlessness
I am still very careful
As I enter slowly
I can feel the pressure crushing
But it is the BEST feeling for this broken body
All the best in you search for your relief
Love
Me

I am so glad you got out in the pool! Having that bit of time where you are without pain and feeling free is so very restorative. 6 lengths is great.

If you get tired of laps you can get a buoyancy belt and just swish around too. I found this both relaxing and therapeutic for working out little grievances my body had with me when I was on crutches.

Are you swimming inside or outside? I find the chemicals noxious too and do much better in an outdoor pool when available since there isn't the fume build up.

It's nice to hear back from you. I'm happy to hear you're feeling better. :hug:

Hi Littlepaw. Thanks for your encouragement. I've been swimming indoors. In New Zealand we're heading into winter. The chemicals are proving very problematic. Two years ago I went to a rehab hospital and we were taken to a 7 foot deep pool 3 times a week. it was heaven and was not treated in the way the pool where I live is. unfortunately it's too far away for me to go unless I went and stayed there. the staff used to have trouble getting me out ( : I'd love it if we had a pool like that here.

The other thing I'm determined to do is get back on a horse. The medical people don't like that but too bad. I'm in a wheelchair and can walk only a few steps but maybe they could tie me on! My hands and feet are where the most severe pain is so it will be very challenging to do it but when I think about it it makes me feel happy. I found a place that do therapy work with horses. I'll keep you posted. ( :

Hi indigo

You inspired me to go to the pool today - first PT in two months - just a short stint - like you the chemicals set my PN off but still glad I went.

i'm so sorry you are suffering so much on a daily basis. i also have a very painful chronic illness too with no cure called rsd/crps. i've had it for five years and one month now and i struggle every day to just get out of bed shower dress and eat. its not the active life i used to have prior to rsd, but i figure there is a reason this happened to me and i try to use the pain i feel every day to help educate others on this rare condition as well as try to help others who are suffering with chronic pain by just letting them know i am here if they need a shoulder to lean on. it is never too late to live your life over again. it may be different then is was before you got sick but you still can have a purpose. the mere fact that you get out of bed each day and are reaching out to others on NT shows that you still have a purpose and you still matter in this life we live. making the most of what we have and helping others one day at a time is what gives me the strength to keep trying. you can do it too. you never know how strong you are until being strong is the only choice you have. i read that somewhere and it helps me keep going. i hope you feel better soon both physically and emotionally. i hope always remember that you matter in this world! soft hugs my friend.

A second time
 

Daniel was approached a second time in his life
While lying on the ground exhausted in his endeavors in his life
and then an appearance when he could no longer move forward
He was so weak
And was told
"You are valued"
"Peace be to you"
Danial thought how could this be possible
He could speak

He was told
"Be strong"
"Be really really"

And was replenished
In his strength

It is not easy
We must not give up ever
Especially like what my father did
This I so do know

Sometimes all one needs is
just to have some to just listen
Not say anything
But just listen

My 18 year was on the bus with her older sibling
My child
Granddaughters mother

This morning
My mechanical woes kicked in
All weather related
It's cloudy and thick with clouds
Humidity killing me
Barometer pressure
Some get it
Oh so can't wait to the pool
And dry days
She said as she came in with a hot water bottle for my back
She was thinking on the bus as her one foot began to fall asleep
Bad circulation
She said it was so painful coming back
Said if I could take one of the pains you suffer from
She wouldn't know what to pick


It is what I have to offer
Hope it helps
As it was given to me
Love
Me