I noticed that I may have come across as a spoiled two year old who is thriving on self pity. I am not, I do suffer from depression, and other mood issues, but my personality is that of an insane optimist. The reason why I can't believe that I will feel better once I have transitioned from being able to walk, to using a scooter or chair, is that I refuse to believe that I will be using either until I am actually in it. Unfortunately I am one of those people who fear self fulfilling prophesies, if I think that I will be using a scooter in a year, I will, but if I say I won't I won't. I know it is a subconscious issue, but I have several times experienced thinking that I haven't fallen for a while only to find myself face first in the pavement a minute later!.
Right now I am working towards creating an acceptable future, where no matter what happens, I will be able to do something meaningful every day. I have an organization funding me, and the hope is that I will have a home based internet business within a year. For me it is a way to prepare for the worst without having to think about it every day, as many people have home based internet businesses.
I am getting better at enjoying the now, and I have started writing a blog, which is the best form of therapy I have ever experienced. It is hard to put myself out there, but knowing that people do not consider me a pathetic loser, has helped me a lot over the past couple of weeks. I was also recently put on a drug for ADD, and I have so much more control over myself, I am more optimistic, don't get overwhelmed as easily, and my physical strength has increased significantly (checked with my Dr who said that was possible). It is the best thing that has happened to me in years, I wonder how I could go 35 years without being diagnosed!
I did not mean for this to be so long, but I just really wanted to clear things up and let you know that I am not the pathetic whiner I come across as ;-) Have a great weekend out there in the big world.
Why do you mention you not a big whimp. Did someone tell you you are? I think we all one at some point of time and I don't think you have to defend yourself at all
Acceptance is everyones own choice and no-one can force you to accept their point of view
All your responses to us here didn't give any indication for you having to explain yourself.
I also went through the refusal part of acceptance and I don't have to justify myself to anyone. I had a scoother in my garage for a year without using it because I felt I will push myself untill my body and mind told me that I have to use it.
You are your own judge how detremental it could be to your "survival" but it's your choice and nobody has any right to tell you how to feel, think and react.
I also believed I will wake up and I'll be "normal" again but when I take that first step getting out of bed and my body works in slow motion I grind my teeth, get up and carry on as usual
Sometimes when I'm alone I sit and shout as loud as possible why me and try to find an explanation why God done this to me and I'm still to find an answer. After my lungs is cleared of all air and my vocal cords shout for a glass of coke I feel better.
I cannot count the times before I go to sleep that I ask God, beg God with tears in my eyes to please cure me and I will dedicate my life to spreading his word (I'm not a full on christian and I don't go to church) but I know I cannot live up to that promise as it's not who I am.
I don't believe that I will be cured but that is a part I've accepted a long time ago and anyway who the hell cares.
I didn't go through depression but anger and I cannot imagine how you feel. Vent your fustration, anger, hate etc all you want and there is always someone that reads this and "listen" to you
In my dreams I'm as normal as everyone else and I do the stranges things in my dreams and this is when I have a smile on face because I think this will at least last till I wake up.
I believe that a positive attitude gives your body a message that all is fine and you feel the strength building up and that makes the depression go to hell.
Keep up you positive attitude and be a 2year old spoilt brat all you want and throw those temper tantrums till you feel better.
Till we hear from you again and u must have a great wkend.
Thanks for your response. I think I needed to explain myself to myself if that makes sense? You all seem to be at a place where you are a little more at peace with yourselves and life than I am, and that makes me seem like a whiner.
I am not, I am a fighter, but my fight is fueled by my refusal to accept the way my MD will probably take me. According to my therapist I am the most stubborn person he has ever met, and I am the only person who can beat him in a discussion ;-)
The depression issues actually go back to way before my diagnosis, but they were never treated, so I think that is why they now play such a huge role in my life. I have also dealt with anger, I am actually on a mood stabilizer to help me not throw things around the house etc. My phone has not gone flying for six months now, so that is a good thing! The thing about all this is that when I am doing good I am flying high, but when the depression takes over, it is a tough ride getting back up. Right now I am flying high.
I don't make sense, to much coffee and adderall ;-)
Have a great weekend, it is hot and humid here, but I still want to be outside as much as I can! I went sailing last week and put to much sunscreen on, and came home without a tan at all!
I popped in and saw this thread and wanted to shoot you ladies a quick note.
I don't think any of us consider either of you whiners or wimps in any way, shape or form. I am speaking for myself as one of those that is in a different place with the MD. I think for me, I came from a different place. I was a weakling all my life, being teased and ridiculed over my weakness and inability to do certain things. I was told over and over again that I was lazy and if I just tried harder, I could do physical things. It was frustrating and depressing because I DID try, yet I was still unable to do things that my friends and family wanted of me. I became self conscious and withdrawn and started avoiding people and things and hiding my inadequacies any way I could find. Being told that I was sick and had MD suddenly made it not my fault any more. Because of that, acceptance of the MD was easier for me.
I have the utmost respect for anyone that finds themself in this situation and can come to a message board and share their thoughts and feelings. I find that strong and courageous --
I will send a little heat your way Mandy, I too hate winter, which is why I live in Florida. It does get cool (last year we had a cold winter with several nights below freezing and we had to use the heater for three weeks in a row, Kathy and Mark have every right to call me a whiner now ;-))
Actually my stubbornness has actually caused me to have a very strong and supportive medical team. Many of them started off with the usual you should just get a scooter blah blah blah speech, but the longer they know me, the more they support my approach to fighting MD, I have an amazing group of cheerleaders, who will now do pretty much anything I ask for. When I ended up with a concussion a few months ago, not a single one raised an eyebrow and said, maybe you should consider..... They just said sorry this happened, get back on the horse and to let them know when I need them. They are ready to help me when I am ready, until then they appear to be willing to stitch me back up!
Kathy, yeah we do come from different places I was never the fastest or the strongest or anything like that, but I was incredibly active growing up. I was always a go getter, a very independent person who did not need anyone's help, so whenever I had any problems I solved them. Before college I spent a couple of years just exploring the world. I worked for six months and saved every single penny and spent the money backpacking around the world with only my passport, plane tickets, and backpack. I probably should be happy that I got to do those things, but I am just so hungry for more! I am working on seeing my MD as a new journey, where I will get to explore different things, but it is hard, there are so many places I haven't yet been, and want to go.
Mandy, I have actually started blogging about my experiences, it is very hard, and I don't think I am allowed to post the link here. The blog would probably give you a better insight into who I am. It is only a few weeks old, but I have received a huge response to it, and I had no idea that many people cared that much about me. I have had over 500 hits so far!
Thanx for heat ladies but hell it's cold on this side. I think all the visitors to SA during the soccer world cup stole all the heat we had left. Summer plse arrive here!!!
I have to admit there are a few advantages we have. Parking close to shopping centres, sitting in front at shows (basically due to the fact I can't get up the stairs. People making coffee for ME when they visit MY place.
Being served at lunches at my mom's place. Having no excuse for cleaning services or garden services. Basically all outside cleaning like pool, etc
Not having to take the dustbin out ever Not having to stand in queue. My kids listening to me when I ask them to pick up stuff (not always doing it anyway) Getting good seats at movies.....
I would prefer to do all this myself but sometimes I like to be exempt" from all those duties
I would like to read your blog P but I have a secret and that is I don't know how to blog or read them. I know I know - me stupid
I've tried to find "blogs" of ppl but how on earth do you actually get there. I had facebook but that was also a mission to get things going on there. My teenagers hog this PC and the only time I get to spend on here is when they're at school.
I know excell, word, Pastel and basically everything to do with bookkeeping and browsing the net but I do need help
I'll ask my boy to help me "find" this but to find yours without you mentioning it on here (I know you are not allowed to)
Well everyone out there enjoy the rest of your day (don't know the time differences)
If that's the case I will absolutely suffocate as in Cape Town we go to about 34 C and then we call it a heatwave.
I found an online F to C converter -- yes, 100F is like 37.77777C. Despite predictions yesterday for around 98 or so, we hit 101 again. Yuck. I took my kids to see a movie.
Mandy, I think you're right that a lot of people view areas based on what they see on TV and those aren't always accurate. I know what you've said about S.A., but please know I've also seen some programs that show S.A. as an absolutely gorgeous place.
I've lived in Virginia my entire life. Virginia tends to have the full spectrum of weather. This has been one of the hottest summers on record and last winter was one of the coldest. That's one of the things I DO like about this area -- it can get both hot and cold and you have a full set of seasons (usually anyway).
I have family in Florida and because I don't care for the hot weather, I've never wanted to live there. My daughter would love it, but my son would prefer to move north where it can be colder.
I respect and look up to all of you. We wouldn't be human if we didn't get scared, frustrated and angry once in a while.
P, I've said many times that you'll fear the scooter or chair until the day you get it. Then, on that day you'll realize the freedom and enjoyment of having it and no more fear of falling or keeping up with your hubby. And no more exhaustion. Don't dwell on the future. Enjoy your legs for now and let the future come at you how it may.
My situation was just like Kathy's. I was a weakling my whole lfe. Teased and ridiculed by my schoolmates. My adult life was easier. I must've met the right people. Still, my friends and coworkers must have silently wondered what was going on with me. The MD diagnosis finally explained it to them and made life emotionally easier, not harder on me.
I am so much more at peace than I was when I was wondering and trying to hide the weakness.
That's my two cents. You guys (gals, actually) are the greatest and you all help and inspire me.
I have always been a little bit of a Geography geek, and SA is actually one of the places I would really like to visit. I followed everything carefully when Mandela was released etc. I truly think it is a very interesting place. Right now I don't see how I will ever be able to go, we simply can't afford to. I live in the way northern part of Florida, so whatever you have seen on TV with palm trees and blue water etc, is not correct. I like it much better here as we have four seasons, and tons of stuff to do.
Let me quote Mark and let you know that you all inspire me! I learn a lot from you, and can only hope that one day I will find the same peace you have!
Well when you get that money tree one day and come visit this place you are more than welcome to stay with me - disabled friendly house (I think - LOL)
For me Geography is my least fav subject and my kids always laugh at me when I try and figure out where places are - I know I should actually read a world map and make sure when I mention a place I actually know where it is .. hehe
Now to be totally honest all I know about Florida is the palm trees and I'm going to check the net to see where you stay and to check up the other parts of Florida (have to find this first) - aaggg me a little bit stupid
I'm in Cape Town and we have the ocean and mountains and we Capetonians live a very slow paced life.
People form Johannesburg alway complain what we have all the time in the world without a worry to get anywhere faster than a snail.
The only worry we have is the petty crime commited (house break-inns and smash and grab) incidents but otherwise we are relatively safe.
When I win the lotto (yea like that's gonna happen) I would love to visit but SA's exchange rate compared to yours is actually sad as we pay about 7x more for everything
When and if you come visit I'll give you a lift on my scooter that I'm gonna pimp out with 4 wheel drive and crazy sound system..
We are 57.2 F today and yet again I'm burning myself in front of the heater.
Q: How does your kids feel about your MD or are they like mine and don't even notice it anymore?
mandy, I'm not sure who your question was aimed at but my two daughters, 18 & 21, take it in stride. it's just part of their everyday life. Fortunately they've never acted embarrassed or frustrated by it. Once in a while they ask me "Am I going to get MD someday?" All I can say to them is "I hope and pray you never will. And there are huge advances been made to treat it and prevent it someday".