indigo,

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

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

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

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.

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.

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.

Hello Indigo,

I just to want to jump in to add soft hugs and healing thoughts. So much wisdom and love has been shared. Thanks fellow members for the deep kindness and practical tips! This is a wonderful place to get support from people who truly do understand how hard this can be day in, day out. I had a devestating nerve injury, lengthy operations for such and have chronic nerve pain. It does take coming up with a whole new tool box and grieving for what has been lost. I too found therapy extremely helpful, as it got me out of a dark place and into one where I still have pain but manage it much better. You will find a new way to be and find parts of yourself that may have even seemed lost to you. You are still in there underneath it all.

I am so glad you have a caregiver for help! It is wonderful that support is set up already.

Please keep in touch as you can. I know forums exist in the "virtual world" but the emotions and caring here are as real as it gets. You are not alone in your struggle.