I am so sick of this!!!!!!!

[mhopset]

I am so sick and tired of having this stupid disease!!!! Sometimes I think I can handle it and then I think, God it is going to be this way or worse until the day I die. I went to the mall yesterday to get my DW her birthday present. I had to stop and rest 6 times before I got to the jewelry store. I honestly thought when I was diagnosed with the Muscular Dystrophy it would never get this bad. Being 18 at the time I thought I could beat it. Now, I just don't give a crap. I am tired all the time. I feel my son and wife are so cheated. Then I go to the doctor and find out just how lucky I am. There are some people that are really bad. I feel ashamed that I am having pity on myself. I jsut get so sick of it at times. I guess I'm just a big baby. I get sick of the stares, the questions, the snickers, the sighs when I'm not moving fast like everybody thinks I should. If I could just have one day of having energy and strength. I think I would run up and down the street all day, pick up Seth and throw him in the air, go swimming, run up and down steps, take DW out dancing and then uh.... well never mind . Sorry to vent guys, but I just get tired of it ya know?

 

[mamajoan]

Tony,,, Life can be a real bite in the butt sometimes can't it?!
Just to make you smile bud.
Joan

 

[SueOKW]

So, did you manage to get the birthday present for DW?? I guess i would say, (and i know you agree), that no one who loves you is being cheated right now because you are still in their lives, active, (maybe not boisterously active, but active...), pretty cheerful, loving, and you sound pretty capable of handling things.... ummmm...

what else? How about the fact that Spring Training has started? any help??

hang in there!!

Sue

ps - my husband never gets me jewelry! What a great husband you must be.

 

[mhopset]

Yeah I made it to the store, I got her a wrap for her diamond, and a watch. Well, actually Seth got her the watch. Of course she talked me out of them soon as I got in the door. I wanted to give them to her as much as she wanted them though. LOL

 

[SueM in MN]

Great sounding presents and I'm sure your DW and DS like you any way they get you....
I saw a great bumper not long ago. It said: Life is hard, but it's better than the alternative.

Hang in there.

 

[SharonS]

Hang in there. Even though I am healthy, my Mom isn't. I know that there are days that you wonder how much more you can take. I know that I often feel sorry for myself and our situation for a while, and then the mood passes. I do realize every day how thankful I am to have her in my live.....realize that your wife and son feel this way also. Even though it gets rough sometimes, I know that I wouldn't trade a minute with my Mom.

It is definitely fine to feel down. I know I feel really guilty when you hear about some folks and you realize that you don't have it so bad.

Sharon

 

[sncbird]

mhopset - I know how you feel!!! I'm 33 and have Limb-Girdle Muscular Dystrophy. I was diagnosed at 25. Dh and I hadn't been even married a year yet. I have 2 children dd 6 & ds 4 1/2. At first this disease didn't really affect me that much which lead to several years of denile. But, having kids 17 months apart really laided me up and I lost alot of muscle strenghth. Which made denile no longer an option.

I have felt & thought everything you have. I felt dh and my kids deserved better than me. I was sick of fighting the disease, ignorant people, stuggling to get from one place to another, etc...etc.... The last year I began to use a wheelchair so we could out and do things and I began to see a therapist (which I'm still seeing). At first I was completely opposed to both ideas but, I'm telling you they are both life savers. My advice to you is you can't beat this disease (at least not yet). Don't put all your enegry into fighting it. You need to learn to live with it as part of your life. Second, my kids have taught me so much about unconditional love. They love me for who I am, not for what my legs can or cannot do. Plus, no one can love your children as much as you. Do not allow ignorant people get you down. They are the ones who should be ashamed for their lack of patience and ignorance. It's not your fault that it takes you longer to get from point A to point B. People in general need to be more tolerant and non-judgemental. Last but not least, it's OK to have a pity party for yourself every so often. What's happened to you and to me as well isn't fair but it's the card we were dealt and we need to make the best of it. Try to look at all the positive things in your life like your family and what you still can do. Maybe try using a wheelchair for trips to the mall. I'm still amazed on how fast we can get from point A to B. I think you're so tired because you're using up your energy in the wrong areas. Please feel free to PM me or e:mail me if you have any questions or want to chat.

Hang in there!!!
Christine

 

[Wheelsie]

mhopset...

Take it from me...I KNOW where you're coming from..I've had (especially lately) days when I have actually told DH that I'd told DH...I wish I'd had someone would have had the forethought to take me off life support when I was born...DH practically cries when I say that... he says things like "you'd actually do that? leave me without you?"

I'm sure even on days when you don't, your family feels the same way my DH does

Even on my "I hate my life" days....I realize that I do impact at least one person on this planet..that doesn't take me out of my funk...but it is something I just need to be reminded every once in a while

I said all that to say this....I have and am going through the same thing you are...
I have cried...I've screamed...I've thrown things (that part can be fun LOL) I've ran my chair into things in my anger and frustration.

I get so tired of people treating me like I'm from another planet....
I get so tired of being qualified for a job only to find "its already been filled" because people see the chair and not my qualifications. I'm a strong intelligent woman!!!

I think its safe to say we ALL have days where we hate who and what we are...but since we can't change us....we need to change THEM!!

If you ever need to talk you can always PM or email me *hug*

 

[danacara]

mhopset, I think you sound like 10x the dad that any kid could hope for. I really do.
-- D

 

[Puffy2]

Mhopset,
I understand your frustration, not really from personal experience myself but from my best friend's struggle with lupus. I know that there are many days that the illness and especially the "chronic...never ending" part of it really takes it out of her. It is a constant battle to keep her spirits up. I can't speak from her perspective, so I'll speak from mine - as someone who loves someone who is disabled.

I don't know if she feels like a "burden" or not - I presume that there are days that she does. She can't work anymore and her husband is struggling financially. It's difficult for her to even help at home. Nevertheless, I'd absolutely do anything to keep her in my life (as her husband would) - I would be devistated if she wasn't with me anymore.

When her illness gets worse, I get worried. I get worried that I will lose her to the disease and I get worried that becasue of the incrediable discouragement that she feels, she'll leave me (and her husband and children) on purpose - that really scares me. She is funny and smart and a beautiful spirit and she is my soul mate. I don't know what I would do without her - I'd be lost. So, when I go to her house and clean for a couple of days, or send gifts in the mail to make her smile, or take her to Disney once a year so she'll laugh- my time, effort , and money - that is nothing to me. It is worth ten times that to have her with me, in my life, making me whole. So, if she says "I've had enough, I can't do this anymore." I tell her , "Suck it up. I need you....and I love you. You can't leave me." Is that selfish of me? Maybe, but she has great value to me and I won't let her think she has lost her value as a person - because it's not true.

I guess what I'm saying is that, yes you have legitamate reasons to vent - and you should vent from time to time because no one could keep that inside and still be healthy (and personally I think this is a good place to vent a little)-
but don't give up, because you have a purpose in life and that purpose is to help those close to you learn to love - give love and receive love. And most importantly, you are a model for your son. From whom else would he learn what it is like to be a man with true character? And to be a man even when faced with challenges.

Boy have I ever said enough....especially to a complete stranger! I hope this was helpful. It was meant to be. I hope I did not overstep my "internet boundries" (?) or whatever.

Have a better day,
Puffy2

 

[mamajoan]

ms puffy, that was just lovely. Thank you soo much

 

[mhopset]

I really appreciate all the kind words. I guess I was having one off those days. It does get very frustrating at times, and to know in my heart it isn't going to get any better, just makes things worse.

I really like the days when im really cocky and saying screw them it is there problem they are the ones that are disability phobic not me. But then there are the times when I'm alone and just feel sucky.

Anyway I'm fine, I know I'm loved. And I just bought a Hot tub. LOL This last statement is for you momojoan. LOL

 

[mhopset]

Thanks for all your concern guys, I really appreciate it. I guess I was just having a sucky day, plus I have a Doctors appt in a couple of weeks and am not looking forward to it. I know he will try and pressure me into quiting work, but I am not ready for that, plus I like my job and the company I work for.

It just gets frustrating at times. I know I'm loved

Seth and Becky went to the store today and Seth brought me back a present, He seems to know when I feel sucky. He brought me a "n-sync' guy and his head wobbles. Don't ask me why! Everytime I look at it on my computer desk I have to laugh.

Thanks again guys!!!!

T.

 

[Wheelsie]

hehehheh how cute! be sure to let us know what the DR says...and don't take any guff.. if you feel you can/want to work you tell him/her that...

Working for a company you love and people that are good people to work for/with is key in having a good life

*group Hug*

 

[Puffy2]

For my birthday one year, my husband took the children (about 8 and 5 then) out to buy me a gift. When they came home, "Dad" had an annoyed look on his face and two gifts. When I opened them I discovered to my children's delight that my gifts included a lovely "ball" and an "enormous purple bunny". I laughed and laughed and thought they were wonderful gifts from my dear children.

Bet you keep that N Sync guy around for quite awhile...

 

[Mskanga]

mhopset;
I'm sorry that you are feeling this way, although my disability was only temporary , I spent 6 months in a wheelchair when I had surgery on my feet one at a time and I can tell you I found some rude people. I cannot imagine how I would feel if this was permanent but let me tell you something, those who don't have the patience to wait for something have a serious problem, I always say we are all going to end up in the same place when we die, what's the big rush? Don't bother with the impatient people , they will never change but please make your life as best as is suits YOU , if you feel you can keep working do so, you know yourself better than anyone else, and DO speak up.
I thank God everyday that I don't have to face the same situations some of you people do , at least not for now, we don't know what tomorrow will bring. Overall I have been very caring of disabled people all my life but since I started coming here you guys have tought me a lot of things that I could have never learnt any other way. Thank you guys, you are the greatest!

 

[SueM in MN]

The NSYNC guy would be my DD's idea of a good gift (she's 16 and would figure that I would let her have it).
It's really especially nice to hear from people like Mskanga and Puffy who come to our little board because they like it here.

I sometimes just sit and cry with frustration for my DD. There is so mcuh I want for her, but she's not cooperative. Some days, like, this morning, she didn't want to get up for school. She knows just when to make herself totally stiff so I can't put her into her wheelchair. But, once the bus came, she was Miss Sunshine and ready to go.

 

[oshun]

mhopset,
Seth is so lucky to have a wonderful dad like you!! Becky is also very lucky. It sound like they both know this too.
My son, who is 10, was diagnosed with Muscular Dystrophy when he was 3 years old. He walked very late and toe walked. He is still walking.
I'm sure it is very frustrating at times when people are rude to the disabled. I get very angry when I hear rude comments myself. Just remember that is what they are "RUDE" and remember you are loved and very special.
Once, my daughter asked why her brother has MD. This is the word I spoke to her right from my heart. He was to be born with MD and God had to pick a family to give him to. He chose our family because he knows that we can handle anything that may come and will love him with all our heart. Hope for a cure is in our hearts as I am sure it is yours.
If you feel you can continue working and love your job then you should continue. I believe that you know what is best for you. Best wishes to you and remember the old saying - "When the going gets tough, the tough keep going."