life on my own terms

Happy Halloween friends!  I know my post yesterday was a lot off the subject of Multiple Sclerosis, but I needed to get it out and this is the best forum for me.  In my defense though I don't think it's so completely off as you may first think.  Much of what I wrote about was centered around guilt that I carry on a day to day basis.  I think that my friend's death hit me so hard in many different ways.  Sadness of course because she was a great person and leaves behind a family that adored her.  The other thing was that she did live her life to the fullest.  She was raised by her father and older brother so she had to find her way in love, life, and survival on her own without a female influence to help guide her.  She did things on her own terms.  Were they always what society would deem as "right", no.  They were right for her though.

I think all of us, no matter whether we have a chronic illness such as M.S. or other life situations we are not happy about need to learn how to live on our own terms.  I have often expressed my guilt of not working. I am nervous about even looking for something part time because I don't want to lose my benefits and then lose my job, like has happened so many times in the past, because of  my illness.

I recently was on the recieving end of some SSDI hate.  A person made a comment to the effect that she's tired of paying for someone else on disability to buy new cars and take vacations when they don't need it.  I felt froggy and decided to leap into the conversation to educate this person that not everyone on SSDI is using her money, many of us have worked fulltime and  paid into the system for enough years to earn enough credits to cover our own costs. Sure there are people out there who abuse the system, but there are a lot more who need and deserve these benefits.  I went on to say I am tired of having to defend myself to others uniformed opinions.   I was told that if I really wasn't taking advantage of the system then I wouldn't have to be so defensive.  I ended the conversation at that point.  I was not going to change this person's opinion because they didn't want to learn.


My question here is, why are we not allowed to have lives and live to the fullest if we are ill and not necessarily dying?  Why people that do not have a medical degree think it's alright to judge a person's worthiness for assistance?   I have many of the invisible symptoms every day.  My right side and genitals (sorry TMI) are numb. I am tired much of the day. I have cognitive issues that get worse every year.  I don't advertise these things though.  I shouldn't have to walk around with a checklist of my symptoms to prove to some one that I'm sick enough for them.  Yes, I run.  I run as much as I can.  I'm even training for a half marathon in November.  My neurologist is on board as long as I take precautions against overheating and dehydration, which I am doing.  When someone says "well you must be doing really good if you can run that much"  I just smile and say "yes I am".  I am not going to tell them that I have to nap for hours after each run.  That my house is a disaster because I am too tired to do anything. Hell, my poor dogs are not even being walked as much because I'm too tired, and they are too old to run with me.  They throw off my pace, yo! (runners reading this feel me on that one)

I'm just doing my best to live life on my own terms right now. I want to live to it's fullest and have experiences that motivate me to keep going.  It's hard.  I have a lot guilt that I am slowly letting go of, but it's still there.