Hi all this is my first post (aspergers makes me ramble a little so excuse me for that) on here I have read so many posts that match the pain I suffer and I relate to so many yet rather than an issue regarding the pills or cause of the pain I hope to connect regarding the psychological effect the pain rollercoaster has on us all. I am looking for peoples advice and experiences to help rebuild my self worth and outlook on the future after a real tough time caused by the pain.
As stated in my bio since 2007 I have been on a rollercoaster of pain that never ends. As bad as dealing with the pain is the depression that accompanies it and also the feeling of worthlessness, helplessness, uselessness and general feeling of no longer being able to be a father or husband. My ex split with me when she didn't want to be a carer only (our son is autistic) and on top of our son's condition I was an added burden to her so I understood her frustration.
It has taken me until now to realise I should not be feeling guilty for the assistance I need from time to time. I will no longer feel I should appologise if I have to ask people to help when in supermarket etc because I did not ask to be infected by this debilitating pain.
I just hoped I may be able to see if others have felt like it is like a rollercoaster of pain and ability/mobility v lack of?
Do others feel the guilt of needing to impose yourself on others to help?
Has it caused others marital issues such as wife/husband not wishing to be carer?
Do you feel a failure as a parent as pain stops joining in so many activities son/daughter wishes you to join in with?
How do you balance the what know how to do with what are able to do now?
My whole support group is now at zero due to ex, How would one even begin to build a new support network that will help feel safe again?
What other ways has the pain impacted on your lives and how have you overcome it?
So sorry for being deep with my questions but to know I am not alone in the struggles physically and psychologically as they do go hand in hand. The mind still knows how to do all the activities I could do prior to injury yet body says "you have got to be joking if you think you can do that again" the acceptance of the new limitations placed upon us is harder than even the doctors accept. Luckily my GP is a member of my church so I got to know him socially and he is far more open to how my health has a hold over me. This is a big help yet even he says the options are very limited for any available help. He knows I was offered surgery with as high as 10% chance of success and higher chance of further spinal cord damage and nerve damage will never be able to be fixed. he knows the damage and issues are progressive so I will only get worse and as such I am able to just phone him directly and have medical reviews or tweak meds if side effects are too much. I was taking : tramadol, dihydrocodeine, gabapentin, amitriptyline, oramorph, buprenorphine and sertraline and could not handle the feeling of everything seeming like a dream so asked if dropped dihydrocodeine would it help and if would reduce pain management and we did cut it. I felt clearer and pain remained at same level so did help.
Please contact me with your experiences and advice but please be positive I do not wish to have people be negative towards me unless in constructive way. My ex did enough negative talk to last a lifetime and I am looking to break free of it even hopefully go on a mini cruise to belgium paying for someone to travel with me as a carer/travel companion and rebuilding social activities as have been stuck indoors for over a year.
God bless you all and I prayer for a pain free day for you all