Quote:
Originally Posted by robocar
It's not easy to move back home after you've been on your own as your parents still see you as their baby and because of your MG they want to protect you even more. Over 40 years ago I had just graduated from college, had a great job in a hospital and was on my own. After the MG hit I had to move back home with my parents until I got married. They drove me absolutely crazy - my Dad said I was lazy and my Mom said nothing but they kept riding me to do more. I had a thymectomy and 3 weeks later I called the hospital and begged them to come back to work - they were kind and let me come a couple of hours a week to do some charting - it was my salvation - I got away from my parents. I got married, got sicker after pregnancies and they still didn't understand - they didn't want to hear about MG and my limitations and need for a little help with the children or try to learn about what I had. It never stopped and I put up with it - I think it was their way of coping - if you don't know about it, it doesn't exist. My parents passed away a couple of years ago and I was cleaning drawers and came across an envelope - in it were all kinds of newspaper articles about MG - probably everything that was printed in the last 30 years(it was a small evnelope!!). They knew and they were just as frightened as I was. We all want the best for our children and we don't want to see them suffer - your Mom doesn't mean to be that way but she is going through her own grieving process and some people get stuck at a stage of grief and can't move on. I recommend you read Elizabeth Kubler-Ross's book on the stages of grieving and you'll know what I'm talking about. Things may change or may not change - remeber, your MOm loves you in her own way and it's killing her to see you hurt. Be well.
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The biggest problem is that my mom is in complete denial about my disease. Its gotten to the point that I'm barely able to walk anymore most days. Occasionally, I'll have a "good day" which means that my muscles are a little looser and I can walk a bit, as the MG is really only in my eyes at this point but the SPS is affecting everything and getting progressively worse.
I really need a wheelchair/scooter to get anywhere anymore, but my mom is trying to talk me out of getting a script for one, saying I have an occasional bad day when the complete opposite is true. Then even on good days, I'm in constant pain, but she doesn't want to hear about it.
I actually put off the sleep apnea testing for about a month because she said I had so many appointments, I couldn't miss more work (to which I agreed), until she mentions to me that its a good thing I sleep alone because they can hear me snoring between two closed doors.
Last night I tried to discuss with them the two options I was given by the urology team as to what would happen when they remove the catheter, if the problem isn't resolved. She completely shut me down and said I'd make a decision at the time, that I can't go in with a defeatist attitude. I don't see my attitude as defeatist, I think I'm being realistic and don't want to make a spur of the moment decision, the team obviously agrees, otherwise they wouldn't have given me my options four days in advance.
Anyway, I'm trying to keep my spirits up since I meet with the stiffness expert next week and hopefully get the BiPAP machine, as well. Maybe this last PLEX will go better than the previous one did, too. It just gets hard as things drag on with no end in sight.
