A lot of things are going on in my life right now, and I need to pick some brains, and who better than you guys?. I have found this message board to be the best resource out there even though I am not that active.
I have recently decided to apply for Social Security Disability, and much to my surprise, I was approved in about 35 days, and will start receiving payments in November (for October). I am currently in a very bad job situation, both mentally and physically, and cannot wait to get out of there. The place has definitely added to my depression, and every night I hurt when I get home as I will by then have been sitting in the same chair for 4-6 hours without getting up. My husband has to come and pick me up every night as I am simply to stiff and sore to safely move on my own by then. I have put them on notice and told them that by Christmas I would like to be down to no more than six hours a week, possibly no hours at all. I asked them to start cutting my hours as soon as they can hire someone to take over my duties.
I am only 34, so even though I could "retire" tomorrow, I am not done working, so I have decided that I want to go back to school. I have found some online programs that look very interesting. The first thing I want to do is get a new Bachelor's degree in philosophy/ religion solely for personal enrichment, I have been doing things for others for far to long. But after the BA degree I want to go back to graduate school and get a degree that will allow me to work from home either teaching,doing life coaching, councelling, or something similar. Do any of you guys know anything about scholarships or grants for people with MD? I have been searching, and it is a jungle out there. I have found a few that aren't disability specific that I can apply for, but my hope is that I will be able to finance my new education 100% to avoid taking out additional student loans (I am still paying for an MS degree in project management, that I never used due to my illness).
I have recently suffered a lot from low self esteem and depression, and I am on a cocktail of antidepressant and sleep aids. I hope that this will open a new door for me, to once again feel useful. Do you guys ever feel like you are just a burden to the people you love? Are you embarrassed when you go places? I find that I get very embarrassed every time I have to meet new people. I am really not concerned about how they perceive me, I just know how I perceive me, and feel ashamed. I project this shame onto my poor husband, and tell him that he should be ashamed to go places with me Do you ever feel guilty about having MD? As if it was something you should be able to make better? We live in a society where we are taught that if you just work hard, you will achieve. I think we all work and work and work, but really achieve nothing, at least not physically. I feel like a half person.
I have been rambling long enough now. I hope you are all doing well!
1) Yes I feel guilty. I always consider my wife and daughters are victims of MD every bit as much as I am.
2) Yes I USED to feel embarrassed going out. I've long gotten over that by now after 7 years of MD. I now take my scooter almost everywhere. There's no more fear of falling or fear of people staring at me getting out of restaurant chairs or up stairs. The scooter has changed my life even though I can still walk indoors. (PS - The Telethon will pay $2000 towards a scooter or chair).
3) My whole life I was the one who took care of others including my MD affected dad since I was 14. He died and my mother and sister both became ill with unrelated illnesses. I took care of them and drove them all over. Although I didn't mind, I never want to lay this burden on my wife or kids.
4) I left my civil engineering job in 2005. It required walking factories, large plants and undeveloped sites. I physically couldn't do it anymore and got out while I still could. I also was quickly approved for Soc Sec. I don't feel guilty. I worked hard every day of my life from age 16-45.
5) I always feel that depression is walking behind me tapping me on the shoulder. I fight it hard and try to concentrate on my blessings. That said I dearly miss the physical things others enjoy like golfing, bike riding, hiking, playing on the beach, intimacy (MD has ruined our love life), and just "running" into a store, etc.
Hang in there and vent anytime. We all understand.
Thanks for letting me "ramble". Unfortunately, the main cause of my depression is probably that I have a "mental" block when it comes to using a scooter or chiar. Whenever I think about it, I shut down completely. The rational part of my brains sees all the advantages, but I just can't (or wont....) do it. I have, unfortunately, become obsessed with fighting MD, and once again, the rational part of my brains loses, and my approach turns into something irrational. I think that if I use a chair or scooter that the disease has won. Rational me, says that I will get a lot more freedom to do the things I want, but irrational me, tells me that that is not true, and the price paid for the freedom is to high. The only thing I want in this life anymore, is for this disease to go away. Sometimes I struggle with the will to keep fighting, and think that I, and everybody else would be better off without me. My husband would be better off, he just doesn't see it, and as long as he ( and my awesome doctors) stand behind me I have no choice but to keep fighting.
I have found that I have become indifferent to a lot of things, I can't make decisions (what do I want for dinner? does it even matter if I eat dinner? etc), and often end up spending a lot of time curled up into a little ball at home. I know I shouldn't be embarrassed to go out amongst people, but my perception of myself, makes me terrified of meeting new people as I project my perception of myself onto them, and I don't want to bother them with my presense.
NP, I too know exactly how you feel. Depression is smacking me on the back of my head everyday. Some days are better than others but I do get over them. I want to do so much more than I do but it is so hard. Sometimes I don't even want to try and I have a great support system. I know these decisions you have to make are hard ones but you will see when you make the right choices your "quality" of life will improve. I look at it like this, I know my situation will not improve so as long as I have people who support me and are willing to take me out, I try to make the job easier for them which in return takes a lot of stress off of me. The aids are your friend and they help you to be comfortable in your new status. Yes, it does feel like you are giving up in a way but are you really? I think not, they will help you do things without stress and your world will begin to open up again. Keep fighting and It does get better!!!!
Thank you for your reply. I am happy to know that things will get better, it is just hard to see how. I know I need to look at what I have and can get, and not on what I will no longer be able to do. But as I am sure you already know, that is easier said than done....
I am sorry you had to give up teaching, ,that must have hurt a lot. Anyway, making all these decisions right now do help me. It feels good to research schools again, it gives me a slight feeling of empowerment. But I keep looking for online programs that will not require me to leave home, and where I will be able to work from home when I am done......
When I read your second post, I was just nodding my head in agreement. I think all of us have experienced your emotions to one degree or another. I totally agree with what Mark and DKBlaze had to offer you. But I'll add a few more things to the mix --
One of the things I've had to come to terms with is that Muscular Dystrophy is a disease. It's no different from a person with Diabetes or Cancer. The symptoms and how it affects a person are different, but Muscular Dystrophy is a disease just the same. While I understand why you feel embarrassed at times, it's something that we all have to come to terms with and cope with. I have long since stopped feeling shame or embarrassment.
While my doctor is very positive and upbeat, saying that he really believes a cure will come in my lifetime, I have stopped living like one is coming. I focus my life on adapting and compensating for the ever increasing weakness. When I found the ONE place in my house that I could sit was no longer workable (I couldn't get off of it by myself anymore), I purchased a lift recliner. When I got stuck on my toilet and couldn't get off of it, we bought a frame for the toilet.
I have my power chair and use it pretty much any time I leave the house. Where a year ago I could do light grocery shopping by myself, holding onto the cart for support, I am no longer able to do that. I must use my wheelchair for any shopping trip. Plus, I really can't buy much of anything because I can't hold it -- say a gallon of milk for example. I could probably manage a loaf of bread, but milk is too heavy. And since we go through 2-3 gallons of milk a week, somebody needs to either go with me or I send one of my children in while I wait in the car. Or, I just ask my husband to go.
Does this make me sad and depressed at times? You bet it does. Do I sometimes get really down, thinking my family is better off without me? Yes, but when I feel like that, I talk to my husband and share those feelings with him.
Despite my ever increasing weakness and disability, I am still a contributing member of this family. Even when something I've done becomes too hard and I need help or need to delegate, I'm still here to love and share my thoughts, emotions, life experiences, etc., with my husband and kids. They love me and need me, weakness and all.
And I'm sure that your family feels the same way.
And I'll share one more thing. I told my husband a year ago that breathing problems CAN occur in some forms of Muscular Dystrophy. I also told him that I would NOT use any form of respiratory therapy and if came down to this, he had to let me go because I didn't want to live that way. I said this to him, expecting that to be years off.
It's happening sooner than I expected. I'm having problems at night, especially, where I have trouble breathing. And despite what I told him, I decided I'm not ready to give up yet. So, I told my neurologist and he referred me to a pulmonary doctor. I had a sleep study done last week and will take whatever action they recommend to alleviate this problem.
It's not giving in to the disease -- it's accepting the disease and finding ways to live as normal a life as possible.
NP -- I hope you can find a way to come to terms with this. Please write/vent any time. We really do understand what you're going through and how you feel. We've all been there -- and sometimes are still there.
I understand completely!!! I too sometimes (only half joking) say to my wife "You'll be way better off once I'm gone". She doesn't like it when I say those things. And it's my way of say" I'm sorry I'm doing this to you". I guess it's just human nature for us to react that way.
Please consider a scooter! You won't believe how good it feels. I took mine camping this year with the guys from work. Without the scooter I would've stayed home for the first time in 20 years. Had that happened, the MD would have won. Also, I showed up for my 30 year class reunion this year. Embarrassment almost kept me home but I knew if it did, I would never go out again, and again the MD would've won. The awkward moment lasted 15 seconds then was gone. I had a blast and forgot I was even on a scooter.
<<I am so happy that you all seem to have found some kind of peace with yourselves and the condition. I hope that one day I will be able to do the same.>>
I hope you can too. It's not easy to get to that point and even if you do, you'll still have bad days where you just want to give up. We all do.
One of the things that has worked for me is using the logic that as bad as things are, they could be worse. And I know that there are a lot of people out there worse off than I am, so I'll try to count the blessings I do have. Sometimes, I have to make a conscious effort to think of or find others that have it worse than I do. For example -- I'll watch TV programs that illustrate some pretty severe or unusual medical problems. It may not work for everyone, but it sometime helps me get more focused and less down about myself.
We're here for you and if you really need to "talk" to someone that gets it, please feel free to send me a private message through this board if you want. I don't work anymore and am on the computer a lot during the day.