Re: Somebody put into words what it feels like to live with MS...take a look!

[Guest guest]

Remember the email I sent out on that women who was in distress. Well, as always, after I posted it, all came to the rescue. I just read the content below in connection with that email. She has put into words which I feel, if I might presume, how we all feel most days.

Cabbie

As said, and Trish then posted to her, I think that most, if not all, of us have our times when we just get sick and tired of MS and all that it brings in life experiences, pain, and medications (and their side effects).We all want to shout: "Stop the world"! "This is not the life I ordered."But we and the world carry on (and on and on, it seems at times).These are a few things I think we need to arm ourselves with, in noparticular order:* doctors who care, and who will listen to us and will explain things to us* a religious faith or a belief in something spiritual or the specialimportance of human life* a sense of humor* if at all possible, a pet........lots of laughter and unconditional love* friends.....be it those who have stuck with us or those on the Internet* a good outlet for venting......here is great!* A family who learns about MS right along with us....doing researchtogether, reading the same books about MS and talking about what has been read. This one is a toughie, I know, especially for some, but keep trying to educate them as best you can.* Getting outside in the fresh air each and every day.....even just for afew minutes down to the gate and back or sitting on the balcony for a bit; likewise, getting dressed each day, even if it is just into comfortable lounging clothing. (spending life in night attire isn't going to ever raise your spirits)....well......you KNOW what I mean and don't mean, necessarily, LOL!!* Getting the right help with pain control......get your name on a wait listfor a Chronic Pain Clinic (ask around for word-of-mouthrecommendations)...lists may be long, so better to be on it than not (can cancel if things improve)* A good pharmacist.....who doesn't mind answering questions, even if we have asked it from him/her before, who goes out of the way for us (e.g. when my neuro phoned in a Rx for the high-dose prednisone, my pharmacist phoned me right away and got one of the store employees to quickly deliver it to me so I didn't have to go out for it)* a stubborn streak that just won't let us give up; will make us pickourselves up and keep fighting the MonSter; a fighting spirit that always rises to the top

* a thickened skin so that the idea of others seeing us using mobility aids,or the fact that people may stare at us or ask us mighty strange andannoying questions, does not ruin our day* patience.....lots and lots of patience* willingness to do research about MS and to learn as much about it as wecan. We must be our own best advocate* advocacy for ourselves with doctors, or finding someone to attendappointments with usThis is getting too long for me to keep at it,......maybe some of you canthink of other things that give us the strength and courage to persevere.All the best,Look for joy in some part of every day!