[Bethsca]

What a great idea for a thread! I can relate to the frustration and uncertainty of not even knowing if you DO have MS. It took more than 5 years to get a definitive DX. Now I'm on Copaxone and doing well for the most part, so today I'm not really here to whine, but just to appreciate the thread (and the whole site.)

[SallyC]

Welcome Bethsca, glad you found us. Pull up a chair
and stay awhile.

[SallyC]

I want to biotch about something else today.. I don't know
about the rest of you over 60 somethings, but I feel downright
abused that, none of the new miracle drugs are being offered
to us.

Like it or not, we are living longer and I demand to live just
as well as anyone else. They even upped the retirement age,
so it's not as though this is a big surprise or something..

Some of us may live for 100 years. I'd like to think that the
quality of our lives matter. We can still vote at 100, ya know.

[AynaDee]

Touche SallyC!

It's wrong and unfair. Everyone's quality of life should be a concern and matter no matter what age! We all have the right to a longer, happier, comfortable life!


And I am sure your grandchildren do understand/will understand some day. I would almost bet they're more concerned about Grandma and how to make her feel better than Grandma not playing with them.
Still so unfair..

I hate constantly adjusting to the 'new normal'.

I hate wanting to go out and do something but the energy's not there.

I hate how slow I have to do everything including walking.

I hate being trapped inside every season because of heat/humidity/extreme cold.

The pain, I can deal with. Not being able to get my words out smoothly sucks. Not being able to think of words sucks. The energy it takes to get a simple sentence out sucks.

Walking like a zombie sucks.
The feeling of loss knowledge sucks.
Not making it to the bathroom in time sucks.
falling sucks, but I can laugh it off.

I hate the vertigo, the electrical shocks in my brain. I hate it when my eyes get so bad that inanimate objects are moving or wiggling, the floor swirling, the walls breathing. Or when I get the spots where I can't see what's in front of me. Or when I am looking at my boyfriend and all of a sudden he has 2 faces (although he is super handsome so having two is kind of nice )

The changes and adaptions made makes me stronger and more experienced than the average joe, I feel. (theres another positive!)

Like what DebbieD said.. not knowing what's going on internally is scary and not comfortable.

The issues the lesions cause in certain areas is scary.

I want to drive myself around.
I want to work again.
I want to be me again.

What makes me most mad is my independence it's taken from me. And how, with my age, people think I am just being lazy even though that person hasn't a clue how my insides feel and what I push myself through on a daily basis and still put a smile on my face and say I am doing good.

None of us deserve this wretched beast.

As far as a cure goes.... I would much rather figure out what MS truly is first.

How can you cure something if you don't even know what it is?

End Rant.




Thanks Sally, that felt good to get off my chest!

[used2party]

I think one of the biggest things that bothers me is not being able to work out and weight lift like I used to.

Not being able to sit outside, go to the beach and being stuck indoors on a nice sunny day while everyone is enjoying the weather sucks.

Having to pretty well isolate myself from all my friends because I can't do all the stuff I used to do with them is a downer also.

Feels good to vent!

[tkrik]

I hate the fatigue and fatigability that comes with MS. I started PT this week and I'm so saddened by the changes in my abilities. He did some testing and I wore out so quickly. Simple things like standing on one leg and lifting myself up and down wore me out in less than a minute. It was so difficult to do it on my left leg and I couldn't even do the 10 reps he wanted me to do. I had to stop and rest and then try again. My right leg was much better. We talked about how quickly my muscles fatigue and he said he's not sure if it will get better as it's neurologically based.

I am going to work on it though and he said that I will see some improvement but overall I will always have muscles that fatigue rapidly. This is so frustrating and irritates me so much. I see a wheelchair in my future and losing more of my independence.

I can no longer drive more than a mile or two as my leg gets tired. I can't stay in one position for too long as it hurts too much to do so. And, I get so tired of all of this and it really makes me mad sometimes.

I hate that I can't go out and have a normal job. I am fortunate to have the medical background and skills to be able to do some medical transcription from home. But, sometimes it is too much for me to sit for that long typing and sometimes my hands have a mind of their own and the tremors cause me to hit wrong keys and my cognition sometimes makes me type completely wrong words. It's funny and yet it's not.

That's my whine for the day.

[Kitty]

Originally Posted by tkrik

I can no longer drive more than a mile or two as my leg gets tired. I can't stay in one position for too long as it hurts too much to do so. And, I get so tired of all of this and it really makes me mad sometimes.

I stopped driving a couple of years ago. Just felt too vulnerable and apt to cause an accident. I miss it terribly.

Sometimes I just want to be able to go somewhere alone....without having to ask someone to drive me.....and just be able to look around without feeling like I'm on a timeclock.

[Debbie D]

OMG Trish-my legs have begun the same thing They get stiff and begin hurting so much if I drive any distance that I end up in tears, trying desperately to adjust to give them release, but they won't let go...I'm worried about losing driving privileges...at least those further than the grocery store...

My hands have also begun waking me up during the night. The ring and baby fingers and the outside of my hands both tingle really strongly, and my wrists are bent funny and take a while to relax. Plus the muscles off of my knees spasm during the night, and it's difficult to stretch those out. Nights aren't what they used to be

[SallyC]

Yes, yes, I know, I know, me too, me too, is what I can say to
you all. It's like, I'm reading your posts and my head is shaking
vigorously up and down.

I find that exercise helps to keep me strong, but only so strong
and I must do it every day to keep myself ready, or I go right
back to weak again. It's a vicious circle that I must stay in,
for the rest of my life, if I want to keep moving.

I miss jumping in my car and taking off to wherever I want
to go and whenever, by myself, without worrying about the
what ifs.

I hate this disease, for all of us.

[lefthanded]

Originally Posted by Debbie D

OMG Trish-my legs have begun the same thing They get stiff and begin hurting so much if I drive any distance that I end up in tears, trying desperately to adjust to give them release, but they won't let go...I'm worried about losing driving privileges...at least those further than the grocery store...

My hands have also begun waking me up during the night. The ring and baby fingers and the outside of my hands both tingle really strongly, and my wrists are bent funny and take a while to relax. Plus the muscles off of my knees spasm during the night, and it's difficult to stretch those out. Nights aren't what they used to be

Please look into wrist cock-up splints, something like these:


I sleep in splints every single night now. I have bilateral carpal tunnel syndrome, but hope to avoid surgery.