I can't do this anymore
 

I became seriously ill nearly 3 years ago. I live with very severe neuropathic pain which has been utterly debilitating. Within 6 weeks I could no longer work Drive or walk. that was in 2013. my life has been non-stop crisis sInce. I am treatment resistant and very few medications affect the pain which is over most of my body.

I have a neurological disorder as well. Both developed at the same time. I feel like I have had my life destroyed. There is little hope of returning to wellness and access to appropriate medical care has been very difficult. I live in a small country and have had to fly to 3 other hospitals to get help. There have been some very good health professionals along the way and also some appalling ones. I'm continuing to worsen. I've worked so hard throughout trying to rehab myself, exercise, diet, and much more. I've educated myself about my illnesses and been proactive throughout but the illness has ploughed on no matter what. I now have no specialist care having been discharged from a pain clinic who had phone appts with me for 10 months. There wasn't anything else they could do although I believe pain care here is very conservative. Reading what's available in the US makes me realise how limited it is here.

As I said I can no longer work. I had to pull out of university and 2 volunteer jobs I was passionate about. I'm housebound and in a wheelchair. I live alone.

What do you do when you have nothing left to try. When your resilience comes to an end? When there's no more hope?

Dear indigo,

I'm so sorry you're having such a difficult time. Do you have any friends or family in areas not too far away who can help you at all?

It sounds as if you need some support urgently. Are you living in a small rural location over there? Have you ever thought of moving so that you are closer to health services.

ahhh, so many questions. I'm sorry.

How do you get on for essentials like food and cooking and cleaning and social support?

There must be support services available to you in such a dire situation. Maybe you could call someone like Healthline and ask the nurses. - Call Healthline on 0800 611 116 for free advice from our trained registered nurses - although looking at the gov website, I think it's more of a health hotline where the nurses ask your symptoms and then offer advice on what you should do next.

What about Lifeline?
Lifeline NZ

Support Services

I think that when you get to the point that you describe, you really have to ask for help. Who can you get to help you? I don't mean only medical help, I mean true support and guidance to help you day to day. Someone who can put in place some practical solutions to your needs. What about a social worker?

You need an advocate. They may not be able to help you with pain management or with your illness but they may be able to help you in other ways so that your life is less of a struggle and that in turn may help with you pain. :hug:

Dear indigo,

This statement alone indicates a very difficult situation and to add to that, the inability to access the needed healthcare is more than I can imagine.

As Lara inquired,... do you have any one for support and help?

I am glad to see that you have reached out to NeuroTalk and I hope that we can be of some assistance. If nothing more, we are here to listen and sometimes that is of some help when we are feeling so defeated.

You may be living alone, but you are not alone, ... you have an entire community here to be by your side whenever you wish to talk with us.

Wishing you better days and better access to needed healthcare.

Hi indigo,

Lara has made many practical suggestions and Hope has beaten me to what I would say - by reaching out here you have gained the ear and support of the Community we all belong to. That small connection can mean the World when all you feel is emptiness and despair. It may not be the physical help, nor the answers, you desperately need, but know that you are not alone, nor will you ever be alone as long as you come here.

I understand the frustrations, the inability to function, the isolation. Even though I have family and my Ex in my life I can go weeks without an adult conversation. Disabilities, by their nature, are isolating at some level to many of us, being geographically isolated as well makes things much harder. I live in a rural area and since the brain lesion which caused the vision problems that stopped me driving, I have felt stuck. My Depression has worsened in line with this.

My release is struggling to read and reply, where I can, here on NT. The acts of thinking and Posting have done more for me than my last 2 Therapists. Please try to alleviate your mental issues, in the interim, by talking to us - you really should pursue Therapy as an option. As for the physical side, try to follow Lara's suggestions.

Wishing you comfort and ease,

Dave.

If that be all I have to offer
 

Dear friend
So sorry
As many here I relate
My life too changed over night
Just lost my municipal job this past April
Dear Father knows what a sweet job it was
Today I have to settle for much less in healthcare
as my insurance I am still grateful for does not pay
anywhere near what my private jobs insurance covered

Back to you
We have some like you I and many others who are
medication resistance it's a blow hard to take
You even in a rural area
Is there not a system in place for persons like yourself
have help come to you
It may not be as often I would imagine
And imagine is all I can do
We all suffer in our own ways
But are united here
A place that has never let me down
Rather lifts us up
Your status like Lara suggested
Can you move your whole entire life
closer to medical help
Or move to Canada
There are med my son needs to get
from that country
It is quite difficult to get decent doctors
That take on medicine as a challenge
But when it comes to the poor like me and my
family it blows big time
And it's now wonder we feel many times like the latter of your
story
And if I may
Thank you for sharing
Please your return is something we look forward too
To know how a fellow sufferer who life has been changed
forever

My pain is something I do not welcome
But it's bad
consumed my entire morning
Waiting for my med to come over me like a wave of a blanket
over my body
Until then
I come on neurotalk
and talk my life away as it once was
and what my struggles are today

Please let someone become your advocate
As mine were my older children
Not in my life right now
But I always try and bring someone in my life
My oncologist
Whom I was just at pays such close attention
even the absence of my immidate family

Are you estranged from family and friends since becoming ill

Like Lara says
So many questions

You take care as best you can
God be with you Always
Amen
Love
Me

indigo,

I'm wondering about you and how you are feeling.

:grouphug:

Dear Indigo,

I'm so sorry that you are having such a difficult and painful time.

I was wondering if New Zealand has any clergy in various churches and social services agencies there, that would come to your home, due to your circumstances?? They would give you support and maybe some suggestions to help you .

My heart and prayers are with you every day XO

:hug:

thank you so much everyone for your kind and thoughtful answers that has meant so much to me. Sorry I haven't responded until now. You're right English Dave, I felt a lot less alone when I read what people had written. I'll answer a few of the questions that people have asked me to clarify my situation. I live in a town rather than a city but health services are still rather Limited particularly in the case of care for people with pain. hence the need to travel to 3 other regions to get basic care. by that I mean 3 weeks in a rehab Hospital and seeing pain specialists elsewhere as my own region does not even have any specialist services. as far as family goes I have frail parents who I was caring for before I became ill. My siblings live overseas. sorry I will have to leave this message as I am mainly using voice activation because my hands are very painful and I have photosensitivity, part of my neurological illness. Just gets too difficult to write. thank you so much to all of you. It means a lot to me that you took the time to reply

(((((( Indigo ))))))
 

Hi Indigo,

I am sorry you have been experiencing such a severe pain exacerbation again.

I apologize for my delayed response. I have been attending medical testing and have not been able to sign in here daily.

I love the many responses given to you here, as they are so genuine, so full of love, of thought and of concern. :hug:

I have responded to your PM prior to seeing this post. I will cut this short for now, since we have been in touch via PM. Redundancy is boring. Lol.

I hope there is more for you, in the way of care, comfort and companionship.

Please know you are loved.:grouphug:

DejaVu

just to finish answering the questions and ideas people raised I am very fortunate to have a caregiver who comes in in the morning and in the evening as well. She is lovely and I know how lucky I am, if I did not have her I would not be able to live here at all. And thank you Lara for the suggestions about Lifeline and Health line. I have used both of these numbers in the past Everytime I ring Healthline they want to ring an ambulance and in 2 cases have done so. However the emergency department is not the place for me now and the hospital does not cater well for chronic conditions.

EnglishDave I agree getting my mental health in a better space would be helpful but that would be no easy thing. I've had very serious depression since my teens and am now in my late 40s. All my adult life I've worked hard to manage it and was what they call 'high functioning ' but many of my helping tools were around being able bodied. So I walked in the hills, ran on the beach, just got out in nature. ....it was always where i felt best. I have to develop new tools I guess. Anyway thanks again for everyone's thoughts.