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Old 08-15-2009, 03:13 PM   #1
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How does everyone else do it?

For those of you at my state of progression (barely walking, barely getting out of chairs, etc), how do you manage to do things like:

Go to the dentist?
Get your hair cut?
Visit peoples homes?

Stuff like this is just getting to be a real pain in the butt. I start worrying 1 or 2 days before these events because it's just so hard. I don't even want to bother going to the dentist anymore. it's all rather depressing, despite my overall positive attitude. Mostly I worry because in a year I can't picture myself still doing those things.

My hair cutter DID offer to do it at my house and I know she was sincere.

Anyone else with these issues?

Mark

 
Old 08-16-2009, 12:19 PM   #2
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Re: How does everyone else do it?

Mark,

A pain in the butt it is. The things you mentioned are all causes for frustration and depression in my life. I am fortunately a fairly little person, and my husband is big and strong, so he can help me wherever we go. The fact that he can help me makes things easier physically, but it is still embarrassing to have him along everywhere I go to help me.


Whenever I get invited to a "girls'" night, I try to come up with excuses for not going as I am embarrassed. Deep inside I know the girls wouldn't invite me if they were bothered with my husband bringing me and picking me up etc, and I do try to go as I don't want them to stop inviting me.

Right now I am actually really depressed and struggle with picturing an acceptable future, I feel worthless, useless, and helpless. All because I can't do as much as I used to, and because I know things aren't going to get any better. I see a therapist once a week, and I am on antidepressants just to function mentally, and even then I barely make it through the day.

Do any of you guys ever blame yourselves, and feel that if you just try harder things will get better?

P

 
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Old 08-17-2009, 07:18 AM   #3
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Re: How does everyone else do it?

Mark:

What a very appropriate discussion topic. Thanks for posting it.

Everything you mention is problematic for most of us. What I have found is that even with my powerchair, any outing whatsoever requires another person with me to help. That person can be one of my children (both teenagers) or my husband. I have come to accept that my muscular dystrophy has progressed to the point that I need help with any activity outside of my house. That includes even the basics of life -- like grocery shopping or a trip to the drugstore. The ONLY time I go by myself is using a drive through. If a trip requires getting out of the vehicle, I do NOT go by myself anymore.

I have learned to avoid going to other people's homes. Most people that I know -- their homes just aren't accessible for me. I would absolutely love to visit my sister, but her home is a split foyer (meaning you HAVE to go up or down once entering the house). Plus, her bathrooms are just NOT accessible at all. So, IF I decide to visit her (a 4-hour drive, which again, I can't do alone anymore), I stay in a hotel in a handicapped room. It stinks because that's an extra cost that I shouldn't have to pay, but her house just isn't accessible at all.

And I think this all leads to what NP74 is saying. I think at any given time, all of us probably suffer from serious frustration and depression over how muscular dystrophy is affecting our lives. I know I do.

 
Old 08-23-2009, 01:55 PM   #4
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Re: How does everyone else do it?

Mark, this was a great thread idea!!!

I feel everyon's pain. I stay in the house most of the time. I haven't been to the dentist in over 5 years. I always disliked going to the dentist, so now I just feel like I have an excuse not to go, lol. I know I need to go and I will probably make an appointment in the near future along with a gynecological appointment ( I haven't been in 2 years). I had the strength to get up on the table back then but I don't have it now. I also need a mammogram---and I don't know how that is going happen since I can't stand straight up.

My main appointments (neuro and pulmonary) are in a medical college facility, so I know that I could probably go there for my other appointments, but I just need to find the appropriate doctors. I usually take my transportation van there.

I don't visit any friends or family anymore because it is so stressful and my anxiety gets the best out of me sometimes.

We I do get out, we have an elderly/disabled transportation service and I buy the tickets for the ride and they pick me up and drop me off. This service is so great! I love it so much. It does get on my nerves we have to wait to be picked up, but it is so worth it.

I know that I am at the point that I can not go out in public alone, and it does suck!!!!!! I try to make the best out of all situations. People still invite me to events, even though they know that I'm not going to come but it feels good just to know that they thought about me.

 
Old 09-13-2009, 09:49 PM   #5
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Re: How does everyone else do it?

Yes, I struggle with the anxiety of "outings". I can still do it, but it depends on the day and how I feel. Even good days I can't do a fraction of what I'd like to. The pain and fatigue take over. I can feel myself pulling away from my friends as I lose a little more of myself everyday. I miss who I use to be. I miss what I use to do. I often feel those "helpless, hopeless, worthless" feelings. I feel sorry for my husband and son who pick up my slack. They are wonderful and loving but I use to do it all and it hurts so much to ask or need help. I think I need to see my doctor about possible antidepressants because lately I get mad and or sad inside at about just about everything little thing and that is not me. Not who I use to be any way. I still have so very many blessings in my life, I can't stand feeling down on myself all the time.

 
Old 09-14-2009, 04:55 PM   #6
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Re: How does everyone else do it?

Cologal,

Ditto, ditto........

I need not say more.

 
Old 03-27-2010, 03:37 PM   #7
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Unhappy Re: How does everyone else do it?

I am so glad to know that I'm not the only person with these problems.I'm nervous about outtings ever since I went into the mall and couldn't make it back out alone.I also fell in a parking lot and couldn't get back up and when somebody helped me up I lied and said I was pregnant so they wouldn't think that I was drunk or on drugs.I usually don't go anywhere alone anymore unless its 1st thing in the morning thats when I tend to be the strongest.I have a cain and a walker but I would rather stay in then use them,they really don't help because I usually fall and holding onto them doesn't make a difference.I now walk with a waddle so most people tend to think that I'm pregnant.My only friends consist of my son and my fiance,I tend to ruin friendships by not answering calls and just not wanting to leave the house.I'm alone throughout the day while my son goes to school and my fiance is at work.I miss going to the mall and taking my son to the park.I notice people staring at me when I walk,and teenagers making fun of me my self esteem is at an all time low.I'm happy I found this site I feel like I have a place to vent.

 
Old 03-29-2010, 11:19 AM   #8
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Re: How does everyone else do it?

skyla,

I cannot express enough how profoundly I understand and have been through everything you just mentioned. All of us on this board are going through the same thing at one stage or another. Post anytime. We of all people understand.

Mark

 
Old 03-29-2010, 01:18 PM   #9
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Re: How does everyone else do it?

Skyla,

I can only second what Mark said. First of all, vent all you need, there are a bunch of great people in here.

I understand everything you said. Are you getting any help from some kind of a counselorr? If not, it may be a good thing to look into, talk to your Dr about how you feel. Also, next time you see your Dr, ask for a prescription for physical therapy in a hot water pool if there is one in your area. I go and work out nearly every morning, and it gives me more energy and makes me feel less like a sitting duck. The good thing about a place like that is that everybody has something wrong with them, so no one will care that you waddle or that you sometimes feel said etc. I started out as a physical therapy patient, and then continued on as a fitness member working out on my own, but with guidance from a PT when needed.

I am mentally, in a pretty ugly place right now. I am also going through some of the same things you are, being embarrassed, missing going to the mall etc. I don't have any words of encouragement other than you are not alone. Remember you have a child that needs you around!

P

 
Old 03-29-2010, 07:55 PM   #10
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Re: How does everyone else do it?

Thank you all for your words of encouragement.Hot water makes me feel worse the doctors say it does something to my body I feel so much weaker after hot showers that I have to sit or lay down because I'm too exhausted.I went to physical therapy but it weakened me so much I needed help to get to the car and had difficulty driving.I'll try therapy again who knows maybe it'll be better this time.Sorry to be such a downer but it's just frustrating.I use to enjoy going out in the early mornings because this was when I felt my strongest,I just don't trust my legs anymore so everyday I go home and just sit in my room I barely go downstairs anymore.I know I probaly need to talk to a counselor but I get nervous about what they'll think of me.I feel sorry for my fiance for getting stuck with me.

 
Old 03-30-2010, 08:16 AM   #11
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Re: How does everyone else do it?

Skyla,

I wish I could do more for you. I am sorry that the hot water is not working for you, to me it is like a magic potion, I work out for two hours most days, one of the two hours is cardio, where I jog in the water. It makes me feel energized, isn't it strange how the disease affects us all differently? My fatigue is 100% mental, physically I am weak, but can keep going forever like the energizer bunny.....

Do not worry what a counselor will think about you, if you go to one and he/she makes you feel uncomfortable go to another one until you find one you are comfortable with. I have been seeing my therapist for nearly two years, and I could not imagine not going any more. If he ever retires, I will be showing up at his door with bagels once a week! Sometimes we just chat about what I could do to make my life more interesting, easier, we will talk about the best kind of fence for the back yard, or which river is better for kayaking, and but mostly we talk about my depression, and how the MD is affecting my life etc. He is kind of my best friend even though I have to pay him ;-)

You may also look into getting some kind of antidepressants, I know there is a stigma attached to all of this, but there is no shame in admitting that you need help dealing with this awful disease that is robbing us of our lives!

Hang in there!

(((((((((((((()))))))))))))))

P

 
Old 03-30-2010, 08:46 AM   #12
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Re: How does everyone else do it?

Quote:
Originally Posted by skyla76 View Post
Thank you all for your words of encouragement.Hot water makes me feel worse the doctors say it does something to my body I feel so much weaker after hot showers that I have to sit or lay down because I'm too exhausted.I went to physical therapy but it weakened me so much I needed help to get to the car and had difficulty driving.I'll try therapy again who knows maybe it'll be better this time.Sorry to be such a downer but it's just frustrating.I use to enjoy going out in the early mornings because this was when I felt my strongest,I just don't trust my legs anymore so everyday I go home and just sit in my room I barely go downstairs anymore.I know I probaly need to talk to a counselor but I get nervous about what they'll think of me.I feel sorry for my fiance for getting stuck with me.
Hi again skyla,

I am at the point where I can not walk with a cane. I switched to a rollator walker. I was very vain at first but I got over it quickly. It was that or I just couldn't walk. About a year ago, the walker started to feel unsafe. My legs just aren't strong enough to hold me up. Neither can I even pick them up and set them down safely. I only walk around indoors hanging on to counter tops, cupbaords and door sills. And i walk sideways because I can't lift my feet off the floor anymore. Here's the point of what I'm telling you.....

In October 2008 I got a scooter. A pride Victory 10. IT HAS CHANGED MY LIFE! I do not care if people look or stare (which they really don't). I can go out on nice mornings like I used to do when I could go for walks. My neighbors all wave and say 'hi'. I can go to the pharmacy, the grocery store, the post office, anyplace within 2 or 3 miles. If my scooter died today I would buy one tomorrow. My whole life and attitude are better with the scooter. Sometimes I'm out for hours. I've put 8 miles on it on some trips. PLEASE consider it!!!!

I do still drive. I have a Dodge Nitro with hand controls. But getting in and out of the car is tough. I'd much rather take my scooter to the store. Thank goodness the Michigan weather is finally sunny and warm. Hang in there with everything.

Mark

 
Old 05-27-2010, 01:44 AM   #13
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Re: How does everyone else do it?

Oh yes I certanly do have these issues. I have 2 teenage boys and sometimes I am forced to do these things. I have severe problems walking and the fear of walking anywhere is a huge problem in my life

I'm the same as you and I stress so much going anywhere ahead of time that I don't even go and give some rather pathetic excuse not to go.

Because I cannot get out of a chair at all by myself my teenage boy has to go with me wherever I go (single mom) and well being a teenager doing this is not the coolest thing to do.

I suppose we all go through this "insecurity" and I myself do not know how to get out of this - I myself need help

Then again I do have a positive attitude even though it's at home

 
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