There are certain aspects to AMN where you suffer.
I need crutches to walk, otherwise I can;t move. I can't go far even if I can move. I can only walk on solid ground. Grass or sand are out of the question.
I suffer in the bathroom. The toilet is a nightmare and taking a shower is the most dangerous thing I do. Often I need to get to the bathroom quickly.
Going out is just hard work. And its kinda dangerous to drive a normal car.
I can't really do anything I wanna do and have to settle for "second best".
I closed my bar/restaurant in 2015 as my AMN became too much of a hindrance to continue.
Since 2015 I have quit working to concentrate on me and my handicaps. I never got a diagnosis of AMN til 2017, so I was only working with visible symptoms for a long time. I have tried to live a normal life as possible. And so based on visible symptoms of what I was suffering I went out and got certain things. Its a process and you have to amass certain equipments to be able carry on normally.
This is how I did it personally. Take from it what you will.
I fell over at work and had to have 7 stitches in my leg. This prompted me to get my first wheelchair, borrowed from a local pharmacy. I moved out from above my bar/restaurant and I got a bungalow and a dog. I got an automatic car, nowadays I have hand controls too. I set about relearning everything I know but to accommodate a wheelchair too, this took roughly 2½ years. I did this alone.
After like 9 months, I upgraded and bought my own wheelchair as there is a vast difference between entry level and top of the range. Don;t get me wrong an entry level chair works just great. But your potential and independence is so much higher with a good bit of kit. I literally upgraded my chair again this week (3 years later) and my 2nd personal chair, 3rd chair overall, will be arriving in 3 months as its currently being handmade to my exact measurements. This time I went for a frame that weighs under 4kg. Its roughly half the weight of what I got right now and it will make me faster, stronger and make getting about that much more easy.
Nowadays I hope I am almost 100% independent and I suffer a minimum. I am capable of looking after myself and dogs with no help. Surely this is what we strive for.
