Being disabled is making me selfish. I can’t help it as everything is always about me. Is where we’re going accessible? If not, will I be able to get in and once in how easy is it to get to the loo and out again when it’s time to go home?
Then there’s the scooter; is it charged enough? Can we get it in and out of the car ok? Are there stairs where we’re going?
Long gone are the days of spontaneity, everything now has to be planned and thought about well in advance and every decision revolves around me and what I need.
It gets me down as I wish it wasn’t like this. I wish I could put other people first and not care about myself all the time. People around me must be sick of it too. I long for my family to go out for the day without thinking about me. How refreshing it would be for them to pick a restaurant without disabled toilets or go to a pub with upstairs seating! They make all the right noises and insist they don’t mind but I bet they long for a day off as much as I do.
That’s the thing about MS; it’s always there and I never get a break from it. I was worrying about how I was going to get out of someone’s house the other day and was told to relax and not worry about it but I find this impossible. When I go out all I want to do is come home again as the effort is immense! This, of course, is selfish and forces me to look inwards all the time.
I don’t always feel depressed about MS and I usually don’t allow myself to let it get me down but sometimes I can’t help it. My husband warned me this morning not to let the black hole of misery swallow me up! I’ll snap out of it but I get tired of having to lug myself about all day! Sometimes it’s hard to face it and I’d rather stay in bed with the covers over my head.
How do you combat the blues and put other people first? How do you snap out of depressing days?
5 thoughts on “Being disabled is making me selfish …”
Hi Abigail, and I am sorry you are having “an MS day” which is what I tell my husband when this stupid disease is getting me down! You ask what I do to try to get over those days of struggle and self-pity? One thing I do is to read your columns.
To say that I think you are doing a great service to others with your columns is an understatement. When I was finally diagnosed after feeling as if I was headed for the asylum for years was a feeling of power and control. Since I am an admitted control freak (others don’t always see this as an asset), this was a “biggie” for me and I began my journey with MS with complete confidence I could handle anything MS would throw at me. I have always met tragedies head-on but after a year or so of doubt, pain, extreme sadness and self-pity , I found your column. By then, I had ended my career in the newspaper business, retiring as an Assistant City Editor because my cognitive skills were affected, and I could no longer get up and go spontaneously.
As I began reading all of your columns, you made me realize I wasn’t the only one feeling like I was riding an emotional roller coaster (Did I mention I hate heights?). While cheering you on through your bouts of depression, mobility struggles and even your victories over constipation and diarrhea, I have found I actually get an emotional boost and realize that yes, I have MS but I won’t let it have me! I thank you for that!
When you need to fight the self-pity party, please try to remember that as you share your journey with us you are helping people fight the same battles as you. These are folks like me who won’t judge you when you’re down and will genuinly celebrate the small day-to-day victories you conquer. I appreciate you and pray you won’t have a “bad MS day” anytime soon. Of course, I may feel differently tomorrow, depending on my mood swings, but I know you’ll understand… Marti Camp
Thank you so much for your comments! That’s the loveliest thing I’ve heard in a long time and I’m so happy my ramblings are helping other people as much as me!
I have a huge smile on my face and am ready to fight another day!
Thank you for allowing me to put a smile on your face. Your reply to me also put a smile on my face!
Needing help isn’t being selfish. The fact that you care about their feelings shows you are a considerate person. You shouldn’t feel guilty. You appreciate what they do, that’s enough. By appreciating them you are giving them a gift. My little sister has SMA and needs round the clock assistance. I don’t mind helping her with things because I know she would do it herself if she could. I do wish she appreciated what I do though. I love her but she is a truly selfish person. Having someone make her a special dinner that is easy to chew or waking someone up in the middle of the night to roll her over don’t make her selfish. Just because a lot of time and energy is spent on her doesn’t make her selfish. It’s the fact that she never attempts to help anyone but herself. I once asked a favor of her and she said no instantly, before even thinking about it. It wasn’t a big favor and she could’ve helped me but didn’t want to in case it turned out to be inconvenient that day. Saying no was just her instant reaction and when I asked why, that’s the reason she pulled out of her butt. I doubt you would ever do that. You are not selfish. You require assistance. Trust me, those are two completely different things.
Thanks. It’s good to hear your perspective