help please

[diguilio]

i need some advice.....how can i get my parents to support me with this horrible disease....i know they know that i have it but they are still treating me like i can still do everything the way i use to......how can i get them to understand

[marti]

I get this from some of my family too. I don't have an answer for you except to say that I have learned to just let it go. I do what I can do when I can do it. You can't please everyone or educate everyone. Take care of yourself and let the rest of it go.

[Seasha]

Educate your parents!

So sorry you are faced with this diguilio. I think the most important thing that lacking for many people without MS is knowledge of this disease.

The NMSS has many brochures to download and print out to share with your parents. There are many topic for you to look over and decide which ones pertain to your situation.

For instance, if you are suffering from fatigue, here's a link - https://www.nationalmssociety.org/Na...hould-Know.pdf

If you have walking problems, here's another link https://www.nationalmssociety.org/Na...acts_FINAL.pdf

To view the complete list https://www.nationalmssociety.org/Re.../All-Brochures

Time to print out what you need and share them with your parents!
Another good way to educate them is have them come along to your next neuro appt. if that's possible.

Good luck!

[pennstater]

Not sure what issues are surfacing or type of relationship. Seesha pointed to some good educational material.

Is it a potential option to take them to a neuro visit with you where issues are discussed? Maybe hearing it in that setting would make it more a reality for them and to face your issues.

I had actually purchased a MS for dummies book when first diagnosed. My Mom read it and shared highlights with my Dad.

[Jules A]

Or maybe family therapy?

[rdmc]

i need some advice.....how can i get my parents to support me with this horrible disease....i know they know that i have it but they are still treating me like i can still do everything the way i use to......how can i get them to understand

I don't mean this to feel harsh, or seem like I'm a Debbie Downer...but IMHO, there are people, even those close to us who will never "get it" no matter how much you try to educate them or explain.

I think some of these folks (especially those close to you, like parents) cope with your diagnosis by
acting like everything is the same. I've been going down this road for almost 20 years, and
I have close relatives who seem to "forget" I have the disease, or act like I can go on doing things
I've long lost the ability to do. And when I might mention it, they seem so surprised.

To save my "sanity" I've accepted the fact that some people don't get it and may never get it, and
I'm okay with that, and accept the person where they are, since they will probably never be able to accept what you're going through.

BUT, along with that attitude, you must "get your no" and be able to tell them you can't do, or are not able to do, if they act like you're able to do something you can't. Even with your "no" they may not come into reality, but at least you've given yourself the permission to bow out of things you can't do, and not feel guilty about it, and worse than that, pretend like you can do it and spend days (or weeks) doing more than you ever should because people don't understand it.

I totally understand your situation, and it may not be applicable in your situation, it's just what I've come to terms with for me.

[ladybug162]

I completely understand and can relate. It kills me and I feel guilty enough not being able to do the things I used to. But to add on the extra guilt you feel from family not understanding the reason you being less active is just too much at times.

Just tonight I had to turn down going to a Halloween event with my cousin, brother and his girlfriend. I have had issues with my back for a few years now which has caused me not to be able to stand or walk for an extended period of time without excruciating pain. I went to this event before and it was tough having to walk around everywhere and then standing in long lines. The combination of pain and weakness in my legs is just too much and if I don’t find a seat fast I feel like I’ll just fall over. I hate not being able to go to these things because it’s something I really enjoy. My family didn’t understand why I chose not to go. Sigh....I don’t know how many more times I can explain it.

Even my own mother who is so supportive doesn’t seem to get it sometimes. She’s always trying to get me to get out of the house and do things with her....shopping etc. She tells me it will do me good to get out. She doesn’t like it and doesn’t understand when I turn her down because I’m just too tired and want to rest from the long work week. It’s all I can do just to make it through a full week of work. My weekends are reserved for resting. Whenever I do give in out of guilt I always have to find the nearest bench to sit down and I usually remain there until she’s finished shopping. She gets a little pissed off when I do that, but I can’t help it. The pain is just too much. And trust me, I don’t enjoy sitting out the whole shopping trip either. Sometimes she makes hurtful comments to me by saying it’s just laziness that I’m not able to do certain things. I wish she knew just how much I wish I could still do these things!

Most of the time I feel like a 35 year old stuck in a 95 year old body. I should be more active. I miss those days when I could get around better and do the things I once enjoyed. Wish I hadn’t taken those days for granted. Sometimes I wish I could wake up and have my old life back...the life before ms and realize this was all just a bad dream.

[Boudreaux]

People are narrow minded, that is their shortcoming, not yours. Do what you can and make deceisions that have your goals, well being and best interests in mind. I've learned that accepting other peoples short comings can do good things for you.

You cant get them to understand that is something they have to do. Just let them know you have limits and dont be soft with the lines.

[Mamabug]

Most of the time I feel like a 35 year old stuck in a 95 year old body.

Lol. I sometimes say that my dad is younger than I am.

I'm 56; I can walk a block and a half it two. With a cane.

He's 83. He still sometimes takes the stairs instead of the elevator to his fifth floor apartment. He often walks half a mile to the food court at the mall to have coffee with his buddies.

[MyGirlsMom]

Lol. I sometimes say that my dad is younger than I am.

I'm 56; I can walk a block and a half it two. With a cane.

He's 83. He still sometimes takes the stairs instead of the elevator to his fifth floor apartment. He often walks half a mile to the food court at the mall to have coffee with his buddies.

Same here Mamabug! My father is 86 and just biked several 20?-‘s 30 miles rides. I am 57 and I am exhausted if I walk 1-2 miles. This definitely isn’t the “me” I thought or planned to be, but at the same time I am so very grateful that I can still walk unassisted and there is still more that I can do than can’t.😉