I'm sure not everybody with MD feels this way but I wonder if I'm weird or something.
The worse my MD gets, the more at ease my mind is about many things. I don't feel the embarrassment, shame or fear that I did early on. By early on I mean when I was walking pretty good and still expected by others to get around in a relative normal fashion.
I used to totally stress out crossing parking lots for fear of a curb, or be terrified I'd fall walking with a group, or fear that we'd come to a flight of stairs. I was stressed out and depressed every day.
Now that I basically am resigned to my scooter outdoors and everyone knows my legs are useless sandbags it's actually much easier emotionally. Also, I don't have to deal with the physical exhaustion. Don't get me wrong. I'm really bummed about having MD but not depressed. So am I weird or have others gone through this phase.
I think you may already know my answer to that question :-). I am in a different place than you are so this is mostly directed at other readers. My depression is slowly getting better, amongst other things through writing, who would have known that writing is the best form of therapy out there? my therapist has only suggested it about a million times, but I had to come up with it on my own (sounds like something a man would say!)
However, whenever I imagine myself on a scooter or in a wheel chair my mind still goes blank, it shuts down, and I immediately withdraw into myself! I become ashamed of myself, hate myself, and wish to just leave this world! I have come close a few times, and I have still not completely ruled out that option if I ever get to a point where I see no hope.
This does not mean that I don't ever have fun or feel sorry for myself all the time, I have a wonderful husband, who is willing to help me ( I am a fairly small person so if he needs to lift me and stuff like that he can). We have recently been fishing, gone to MLB baseball games, we went to the Daytona 500 and the Atlanta whatever Nascar races last year. We go to the beach, the movies everything everybody else does, but say the word scooter or wheel chair and I will be done having fun for that day and you might as well take me home! My life is as normal as it can be, and MD does not fill 100% of my mind, only about 95 ;-) The rest is full of life, sarcasm, and a good sense of humor!
I hope you will trust me on this. You will go through a rough phase when walking becomes almost impossible (indoors yes but outdoors will be out-of-the-question). That was my worst period. It lasted about a year. Unfortunately this may be the point you are approaching. Then I got my scooter and the world opened up to me again. I take it everywhere and ride around my neighborhood every day. The neighbors wave and say hi. I can cruise around my backyard. All that had been taken from me and was suddenly given back. You'll have to live it to understand it, I know.
I trust you, but until I am there, I refuse to do so. I am still unable to see myself using a scooter or chair, there is literally a black curtain that closes of that part of my brain when I think about it. I try to think about the things I do every day, and then picture myself doing them on a scooter or in a chair, the curtain comes down immediately, and on bad days it is a brick wall.
If it has to be, I do hope that I will come to the place where you are, you are a very strong human being, I'm just stubborn!
I totally agree with what you said. I too had those exact feelings and now I feel so free. I don't have to hide, I don't have to pretend that there is nothing wrong with me, I don't have to show off in front of certain people, I don't mind asking for help (sometimes, lol). I am just at a good point in my life. I know this situation will probably not get better, I have seen my father and my uncles go through this so I know what to expect for the most part. All of our situations are different and I don't know or care if I will go sooner or later than the next person. The most important thing to me is living life to it's fullest EVERYDAY!!!! Do I get down and depressed, Hell yeah but never for long because then I think of all the things I could have been doing while I was having a pity party. I want to encourage others because If I can get up everyday with a smile on my face, so can you...life is not easy for me at all but it is definitley worth living!!!!
NP, I also understand what you are going through unfortunately while I was trying to fight what was happening to me, I guess the higher powers had other plans for me, so basically I was forced to use a chair and ask for help. Knowing me I would have never gotten a chair, just like you. It was hard for me to get the handicap placard for the card....but who was I fooling, no one but myself. I'm stubborn and hardheaded, lol. It all worked out for the good, so when it is your time, it will be your time and hopefully you will learn to accept it and move on with life. Life will be different but it will not be over!!!
I know you are both right, and I know life is worth living etc. I just can't seem to get over the guilt, and I still blame myself and think that I must have done something to be in the situation I am in. I grieve for my husband and my parents, I really don't care about me, I am sticking around for them. Two out of the three of us sibling are disabled, my youngest brother had meningitis as a baby and was left severely handicapped both mentally and physically. I just want to make them proud of me. I hope that makes sense?
I try to spend as much time as I can doing fun stuff like going out on the Gulf on my friend's boat, going fishing, attending concerts, going to ballgames you name it. I do tons of things but I can't help to feel that I have an expiration date...