I was going to call this my tips for living with MND/ALS but I think that this may help anyone. I feel that I've learned a few tricks in my 43 years and especially during my time with motor neurone disease. It's good to share, right?!!
1. Sometimes, particularly if you have an illness, you meet infuriating people. They are usually people in 'authority' who will use their position to intimidate you. The people who did this to me recently have been doctors and social workers. They think they know everything and talk at you, instead of to you. You know they are talking rubbish or avoiding the issue and they possibly know that too. My initial reaction was to show my aggravation, be rude if they were rude to me, or cry hysterically (mostly put on!)
That behaviour doesn't work. The way to flummox ignorant, power mad people is to stay very calm. Express your wishes slowly and succinctly. Only say what you need to say and don't engage in pointless conversation. It may get results and save your sanity...
2. Fear is the enemy. If you fear something, for example, an illness, it will feed off your fear. Dogs normally bark at the people who are scared of them. Bullies sense who are afraid of them and home in. When I lost my fear of my illness it left me alone. I fear very little (the dentist is scary) and that is empowering. Some people fear me, mainly the power freaks mentioned above, which works for me.
3. Every problem has a resolution. I've been in the depths of despair, wondering how I can possibly solve certain problems. I worried myself silly and couldn't eat or sleep. Especially if you are ill, everything seems to become magnified. My hospice doctor has always told me that and I agree with him. I try to remember that and remain nonchalant (not always successful). But problems do resolve eventually or naturally dissipate in time. And then new ones turn up!
I hope my thoughts will help some of you. I'm trying to be a peaceful warrior 'Life is what happens to you while you're busy making other plans.' John Lennon (1940 - 1980), "Beautiful Boy"