Originally Posted by JoannaP79

Hi all, Im a regular in the Peripheral Neuropathy group but am struggling with severe anxiety and overwhelming sadness over all of this so have come here to say hi and will probably depress you all even more in the process

I have full body small fibre neuropathy, so it is in every part of my body causing awful pain, changes of sensation and all the horrible horrible feelings that come with this. I am on max gabapentin for it. I also have an autoimmune arthritis, uveitus and awful tinnitus (relates to nerve damage). I have had a low level depression over this for the last 2 years but now and again it hits me really hard and I feel extreme despair. This has got so bad I sometimes struggle to function through the day. This has happened this week. Alongside the awful pain and discomfort I am really struggling with the changes to my appearance - my legs, bum and hips have lost all bulk due to muscle atrophy and the skin has changed significantly and continues to do so. I have to keep trying new clothes to disguise it and I find the continual adapting to change that I dont want to see happening exhausting and exceptionally depressing.

Do members on this group have a great deal of emotional support? Does it help to deal with the health issues and subsequent depression better? I am a lone parent to a 3 year old boy. He is my only reason for keeping on top of day to day life and I do live through him and try savour the things we do together. I have to be very strong to hide this from him and he can be a challenging child behaviourally as well. This adds to feelings of isolation.

I have spent this week thinking about people who go to Dignitas (just because of feeling so low) and I actually felt pangs of relief thinking. I won't do this as I cannot and don't want to leave my son who needs me. But, I sometimes feel like Im trapped dealing with this for years because I have to be here for my son and can't leave him.

I am 36 and wish desperately beyond words that I was in my late 60's. I dont want to die immediately but I wish so much that my son was grown and happy and I had say 5 years left. I'd feel so happy knowing that.

I would love companionship, emotional support from a caring parner who placed minimal demands on me and accepted what comes with this condition. Someone who wanted to take care of me and accept I dont have much zest to do the things others my age do. This is virtually impossible and too much to ask I know. I use every ounce I have to hide this from my son and look after him. I couldn't find the strength to put on a facade for a partner but I am feeling so so isolated and alone and afraid and just want to feel a bit safer and secure if that makes sense.

I feel extreme grief over the life I had. I felt young, I loved going out, dancing, music, great career. Hopes of a lovely family life. I feel extreme grief and it is so overwhelming that I would give anything for my past life to be erased from my memory.


I hope I havent made you all feel more depressed!