Never feel guilty about your posts. I can only speak for myself but I could have written that post. I am now 60 and have been where you are so many times but then I think of my kids,grandkids and now a g-grand sometime in April so even through the bad times just think about all your blessings. That is what will get you through.
My sister told me that my parents feel guilty for “giving me MD” and they think it’s their fault for robbing me of a normal life.
My mom turns away when someone helps me to get up from a chair or when I fall. She gets angry and upset with the person that helps me get to my feet again. The anger is more directed at my dad when he helps me.
My dad gets nervous when he has to help me get to my car of help me up from a sitting position. Sometimes when he struggles he actually starts shaking and I can see the stress in his eyes
We do not talk about the MD but I need to tell them it’s not their fault but I’m not ready to have that emotional discussion with them
My younger sister tries to make a joke of the situation if I fall and her husband needs to help me up. Sometimes it’s ok and sometimes it angers me. It isn’t always an appropriate time to laugh esp. if she can see that I’m getting tearful or angry. I suppose it is her way of coping.
My elder sister treats me normally but told her 2 year old daughter that I’m “sick” that I constantly need help. Her daughter also knows when I walk to a door holding onto someone that she mustn’t get in the way where I walk.
Lately she comes and holds my hand and tries to walk me to the door or even to my car. How can I tell a 2 year old not to do that because she throws me off balance?
I hate seeing my family “suffer” because of this and sometimes I think it is harder on them than on me
Even my ex constantly asks me about my health and how I’m coping and even wants to take me out with the boys for a day of "fun". He is a married man and I feel in a way “sad” that he thinks he needs to treat me differently
How can I let my parent understand that I’m ok (even though I’m not at the moment) without having the discussion of feelings etc. etc.
I’m going to lie to them anyway.
The following user gives a hug of support to mandy37: Dreaman (04-12-2012)
Maybe weather you are ready or not you and your family need to have a discussion about this.
My mom also had MD but she hid it from me while growing up. It would have made my life so much easier if we could have had a heart to heart about it.I could have understood why I was diff from other kids. I never ever blamed her for it. It just is.
My daughter also has it and we talk all the time and it helps both of us altho she hides it from other people. She is 37 but she is still doing really good.
Don't hold back. You will feel much better for it.
Mandy Heidi here my mum and dad feel guilty too as we know of no one in the family that has had it so there is just me! THey lived in a house that had 7 steps to get in and I found it SO hard to visit as it took me ages to climb these steps and if they heard me coming and came out I could just see in their faces....strange looks...not understanding...angry...guilty ...sorry for me... and I would rather they didn't stand and watch, yeah I may look strange and awkward and it takes me ages but I'd get there ...and visiting always reminded me of my condition and would always make me teary...so when I got in the house I wasn't feeling in the best of mods so there was always a funny atmosphere..anyway needless to say my visits over there got less and less. But they too are getting on in age and this year downsized to a retirement village so no steps and easier for me to visit....so now I can get into the house but it doesn't stop there does it now you can't sit down because all the chairs are too low!! so a couple of cushions and the phone book!! phew sometimes I wonder why go out it is so much easier not to bother and stay at home!!
I find when I am home the 'condition' doesn't seem so bad but as soon as you want/need to go out it is like planning an expedition so many things to think about.....
life isn't easy but I guess it is what we make of it today I am feeling teary and fed up and am crying now but really what is the point of being upset because that isn't going to make my md go away is it????????????? so pull yourself together Heidi and appreciate what you still have x keep in touch x
I feel paranoid all the time. I walk with my head low so I can see the ground with every step I take. I'm so scared of falling.
Sometimes I think I can't wait for the time I get to have a scooter that way I won't have to worry about falling or the fact that my legs and feet feel like they are on fire also so people won't stare at me when I walk or waddle.
Do any of you guys limp? Sometimes I limp and sometimes I don't. I don't know why but I can't help it when I get in my limp moods. Also have any of you experienced falling and trying to get back up and putting weight on your knees. Then when you get up to walk your knees feel like they can't hold any weight? It happens to me when I feel. It's very scary.
Hi, I have Myotonic Dystrophy 2. I am 67 years old and do not look disabled. People don't understand sometimes. I do have difficulty with steps and when there is a steep curb need to ask for help. I am told I need to do more exercise and basically blame me for my inabilty to do certain things. I can see where walking with a cane could be like wearing an alert bracelet and maybe people would be more understanding.
A cane definitely helps people realize and understand that you have a problem. It hard accepting and using a cane but take it from someone's who's been through all of the stages from cane to walker to scooter. Now that I'm on my scooter there is NO DOUBT that I have a problem. Most people smile and open doors for me. In the old days, I got the impatient "what's HIS problem" that you are getting. Hang in there!
I'm feeling depressed. I keep gaining weight, and all I want to do is hide. Hide from my family and hide from the world. I don't know how to shake this depression off, I've been depressed for many years now. I find myself bitter and jealous of "normal people." Some people day-dream of being rich or having the perfect body or sleeping with your favorite movie star. I day-dream about being able pick something up off the ground, or getting out of a chair easily, or being able to hop in and out of a car. I feel like everyone is staring at me whispering "Ew look at her, what's wrong with her? Why does she walk like that?" I think about the fact that I'll never have kids, and I think about my future. What kind of future do I have? I picture myself morbidly obese sitting in a night dress all day laying in a bed and in an "home" at the age of 45. I hate myself alot sometimes.