Tom, looking at the responses from the Christmas blog, one realizes how just being able to write a few lines about situations that pertain to living life to the best you are capable of; blesses and encourages others immensely.
You know that when you experience such a life changing situation, you can either accept it and do all that is in your ability to do as much as possible to regain the independence you are capable of; or you go into a depressive state, shutting out everyone and everything.
Every day living becomes a challenge. The unexpected becomes the normal routine. You and your caregiver can try to establish a set routine, because it is drilled and reinforced to keep consistency in your care and lifestyle as much as possible. Between the necessary equipment, doctor appointments, and just mundane activities, circumstances arise that alter your routine and this becomes the norm.
You know everything in life requires you to contribute something in order to obtain something. In other words, what you put in is what you get out. Living life with a disability is no exception. How you deal with your situation and the people around you directly impacts how you are approached and treated. You can be positive, informative, courteous, and those around you will try to do anything possible to help in any way they are able. Or you can be negative and no one wants to be near you or assist you with anything. You should not take anyone for granted, especially your caregiver. This took me a year or more to realize, as my wife is my caregiver. But a simple thank you or I appreciate you can go a long way. Another learned lesson is to call for your caregiver only when it is something that cannot wait, (the expression “patience is a virtue”), is possibly the best thing I have learned from my disability. Many benefits, equipment, and even assistance has taken some time, effort, and persistence to acquire. But, it has reaped many dividends, including some items and equipment that we never would have even known about.
So hang in there, keep pursuing your goals and needs, (respectfully, but persistently and determined), and it may take time; but you will more than likely receive more than you ever expected.