Looks like I may be getting some help, at least one afternoon a week, hopefully two, fingers crossed, my DH isn't really on board with this, but I don't know how to do it 24/7 without a little help.
Once again, I have well intentioned friends telling me I need to take care of myself, but even with help, there is so much to manage and no one else can/will do that part of it, as you well know. It is so difficult for people to understand when someone can't do anything for themselves, how time consuming it is to do it all for them. When I get a rare spare moment, all I want to do is rest. Friends tell me I need to get out more and they miss the 'old' me, but I am so exhausted, that faking being happy is just too much. Recently, when someone complained I was turning down invitations, I just burst into tears. Are they kidding? Really? I have a broken foot! Not to mention I would have to arrange coverage for my pals.
Someone actually dropped off some DVDs of a television show I could 'binge watch'. The last thing I want to do is watch more television as it is on a lot already for my husband, and even if I did, who has time to binge watch tv? I know they mean well, but I don't need the added guilt that I am handling this wrong. What do they think I am doing all day? I have been very proactive so far and one of the reps from an agencies who visited confirmed that. This might be controversial, but I think the hi profile pals we see in the media, who have a lot of help give a false impression of what this disease is really like for the rest of us. One friend told me of someone they know who had a private plane and was living life to the fullest with ALS, like its glamorous or something, sorry for the rant, feeling bitter today, I guess.