Living with care

1

Living with care is something of a necessity for some of us, a lot of the time it can be really nice if you happen to stumble across the right people.
But, as with most things we can’t live without,living with can also be difficult. I get asked on occasion about how I approach this and an example question is below :

“Hello , I need to talk to you Tom about how you deal with your PA’s I’m finding it more of a nuisance, hassle and just the whole thing brings me down. I seem to be much lower mood than usual but this has been for a while. One of the biggest issues is giving me my space and own time. Furthermore when I am visiting family giving me and my family bloody time together alone lol. Any wise words of comfort or even better assertiveness!”

“I think that as you say it is a nuisance getting time on your own and for most people having time to themselves is an underrated necessity. I struggle from similar issues and being so dependent on people who have to be close to you to do their job can sometimes test us. We will have other complexities that are specific to our situation that affect the ability to spend time on our own and to do that comfortably may not always be possible. As you said, family time is so important and my family and friends often get frustrated that we can’t spend as much one-on-one time together as we would like. You have also highlighted one of the solutions which is to be assertive. Explaining to those who work with you that being alone with friends and family (and yourself) is something that you need is critical. Once people understand this they are less likely to be offended when you say, bluntly, “I’m okay now.” Or “I’ll give you a shout when I need something.”.
I try not to be bothered about asking friends and family to go and ask a PA to come and help in it nature. One can meet me when I need something. They sometimes are embarrassed about going knocking on a PA’s door but only the first few times.
There is a very good website by an American tetraplegic lawyer that I have been reading, I think he gives strong and useful advice and has a good attitude towards presenting himself and tackling problems just as you do. There is a section on these kind of issues which you may find useful, I really like the article on “attitudes”.
The link to the article on assistance is:  http://www.wheelchairlife.net/Assistance_And_Assistants_For_People_In_Wheelchairs.html
this may not be particularly relevant because it’s US oriented, I think you could probably skip the first few chapters and around the middle there might be something useful. There is definitely some good advice about how to deal with the more general issues of close working.”

Minor OP

1

operation went well today in terms of no complications. They were not able to remove the stone and will have to use PCNL on around 1 may to remove whole thing. hopefully back home tomorrow. (PCNL is a method of creating a small hole in the back to remove stone directly from the kidney)

Positive Mental Attitude (but not cringeworthy)

http://www.wheelchairlife.net/Positive_Attitude_Most_Important_For_LIFE_In_Wheelchair.html

FANTASTIC article which manages the delicate balance between patronising, overbearing advice and firm, useful guidance. Great observations on positive attitude when “inconvenienced” by disability. It definitely reflects significant portions of my belief with respect to attitude and additionally refers to attitudes that I strive to enact. Congratulations to the author and I hope many people benefit from this writing.

As an afterthought, I would assume that many people in a position to appreciate much of this reflective writing are already pursuing the mentioned ideals whereas people with a tendency for depression and negative thinking may not be in a position to heed the advice. It is nonetheless very good advice for most of us.