Ugh....

[tigergrl74]

I am somewhat new to the whole MS lifestyle. I have only been diagnosed for 10 months, however in those ten months I have quickly moved on in my diagnosis to having a very aggressive form of the disease. Here's where it gets tricky, everyone around me treats me as if I am super fragile. Which compared to who I was a year ago, I am totally fragile. But sometimes I just need to feel like I can do something for myself, or for my kids. Nothing major, something like make them a surprise treat when they get home from school. Even though I would need help doing this, it's the being told that you shouldn't because it will wear you out that is really getting to me. This disease has taken everything from me, and I am trying to fight through it without caving into depression and such, but it's really hard to avoid it sometimes when so many decisions are being made for you and not by you anymore.

[MSSINCE09]

me too

I am very sorry to hear this. I as well have been told that I can't do things because they will wear me out. And guess what my husband is usually right. But over the last couple of years of this he has learned that sometimes I just have to try to do things and if I get to tired oh well at least I tried and he can finish it ( of course I always make sure he is up to finishing my task before i start) . I hope that you are able to do more things you enjoy sometimes and try to stay positive (easier said than done). Wishing you much better days.

[Cat Mom]

I am sorry that you see having such a horrible time with this awful disease so soon after being diagnosed. I do not have an aggressive form of ms but I do know how you feel with regard to everyone treating you like you will shatter if you do anything.

I had to gently point to my well meaning family and friends that I didn't like being fussed over before ms and I still feel the same way since my diagnosis... It also reminds me that I'm sick.

It's those small things like making your kids a treat after school that makes us feel like a human being and not a disease or long term disability case number. I hope you keep enjoying these small victories in defiance of ms.

[KatieDidNOT]

This disease has taken everything from me, and I am trying to fight through it without caving into depression and such, but it's really hard to avoid it sometimes when so many decisions are being made for you and not by you anymore.

I am so sorry that your MS is progressive.

People are making decisions for you because they think that is what they are supposed to do. Their heart is in the right place...but it is not in your best interest.

Here is a suggestion. Which one of them can you confide in most? Pull them aside and have a heart-to-heart. Tell them you know you need to rest, but you also want to do things while you still can...even if it means being a little tired afterward. Having an important role to play is therapy in itself. Also tell them you can't do it without their help. Suck up to them a little, get them on your side and let them be your advocate vs. conservator.

If you want to make cookies...make cookies. Let them help you.

Sounds to me like you have a somewhat positive attitude...and a little bit of spunk too. That goes a long way. Seriously don't lose that. Don't let this disease consume you as it has so many.

Best of luck--Katie

[michiganmsbiker]

I am somewhat new to the whole MS lifestyle. I have only been diagnosed for 10 months, however in those ten months I have quickly moved on in my diagnosis to having a very aggressive form of the disease. Here's where it gets tricky, everyone around me treats me as if I am super fragile. Which compared to who I was a year ago, I am totally fragile. But sometimes I just need to feel like I can do something for myself, or for my kids. Nothing major, something like make them a surprise treat when they get home from school. Even though I would need help doing this, it's the being told that you shouldn't because it will wear you out that is really getting to me. This disease has taken everything from me, and I am trying to fight through it without caving into depression and such, but it's really hard to avoid it sometimes when so many decisions are being made for you and not by you anymore.

Hi Tigergrl,
I am very sorry for what you have to go through. From a caregiver's point of view, the people around you don't know what to do and are just trying to protect you. I go through this daily with my wife. She wants to keep going and going and shouldn't because of the effect it will have the next day. It is very hard to sit back and watch her struggle, but she made it clear to me that she won't give up her life to ms, and I respect that. You may tell those close to you something similar and let them know you are going to do certain things simply because you are going to keep living your life as much as you possibly can. Each day is a challenge, but it's also another chance to get stronger and fight. I hope at least some of that makes sense. I seem to be rambling. Take care.