Illness Whine & Cheese Thread.
 

If anyone needs to biotch, complain, whine? This is your thread.

I'll start....Although I have lived with this putrid, hateful, mean
disease for 50 yrs..DX for 40 yrs.:eek:, and am still going strong,
I don't want to miss an opportunity, to tell the world what I
really think!!:mad:

Especially now, that MS has taken away the fun of being an active
Grandma.....grumble.....I try real hard to be a part of their lives,
both for their benefit and for my DD's.

I hate this Disease and all chronic illnesses that take us away
from our loved ones and friends, places where we want to be
and places we need to be.:(:mad:

Your turn....:grouphug:

Nobody wants to whine with me?

I haven't been diagnosed with ms yet but.....I hate that there isn't one single test to give you a yes you have ms or no! I hate being a human ginea pig and pin cushion. I absolutely hate needles since I was a kid. I feel that most of the run around game most drs play is only about money. Ok I am done for now lol

How much time do you have? How many words can one post be? Is there a limit?:D:D

I get what you are saying Sally! It's so hard for me to not be able to do the things I used to do and/or at the speed I used to do them. Since being dx, I have seen and decline in my abilities and it's so hard and frustrating. My mind still wants to go, go, go but my body says no, no, no. The two are just not coordinated.

I know I've said this before but, I miss working. I miss doing fun and exciting things as well as the mundane things at work. I miss the social interactions that one gets when they're working. I miss the income and get so tired of being so strapped financially. I miss get dressed up for work everyday.

Passing the whine and cheese . . .

I'm with tkrik--how much time do you have? :rolleyes:

MOST of the time I really try to focus on the positive and not dwell on the downside. That said--I think it's a good idea to have a thread like this once in a while where we can come and dump the trash. Sometimes you just HAVE to dump it! There are days when it all builds up and you feel like you're going to implode.

And my family suffers enough from what I DO share with them. Not because they're sick of it, but because there's nothing more they can do than what they're already doing. They already feel bad. Reminding them every single day how lousy I feel isn't helpful.

What my family/friends do tend to forget is that it's not always "just" the MS. Like most of you, especially those of a certain age, I have other stuff going on that's often just as debilitating as the MS. Nothing life-threatening, just more stuff piled on to increase my whining misery.

Like MS isn't enough without arthritis, IBS, chronic infection/rash, sore toes, anxiety, and all the other complaints du jour.

My body doesn't want to do anything, and my brain doesn't either. I'm doing the best I can coping with the ever-lengthening list of things I'll never do, or never do again. I'm trying to adjust to changing the way I do everything (cook, clean, run errands) and then, just when I get used to the "new" way, having to change again.

Currently my whine is that I've been dealing with several weeks of pain. Not blinding, excruciating pain but day after day of having it hurt to sit, hurt to stand, hurt to lie down--never able to find a pain-free position for more than a few minutes--it's getting really old. I'm thankful that I CAN find a few minutes of relative comfort, but it sure is whine-inducing.

I hate the uncertainty...of not knowing what is going on internally, and what will come next.
I am angry-I am withdrawing from talking about how I feel, what is going on both physically and emotionally. I just feel like I want to go away, be by myself.
Now that I'm off of Copaxone, I don't even believe I have MS, so i just try to ignore the stupid symptoms...but they keep tapping at the window, bothering me. Grrr.

So sorry, Sal, for what MS has taken from you. We love ya...:grouphug:

I hate having 'MS days'. My body tricks me into thinking that my new normal is going to work after all. I can do a lot of things I want to, I have found I can exercise and enjoy it and even park way out in the parking lot on a cool evening and walk into a store instead of fighting for one of those 6 handicap spaces. Then I have an 'MS day' and I'm knocked on my feet and can't do anything at all that day and most of the next. No, I can't do a lot of the things I used to but I can still drive, enjoy my grand kids, go on vacation with a scooter. I'm not sure I would enjoy nursing with what the medical field has become.

I hate the unpredictability of the whole illness. I hate worrying, that as I go into my 40's that I am going to reach menopause and I have to not just deal with that aspect as just a woman, but the wondering!! What is menopause and MS going to do to me!?

I hate worrying, that if I get a lousy cold, is my body going to want to just lay around in bed all damn day! I hate that colds settle in my eyeballs, and I have a little blurred spot to deal with!

I hate, having a hot day, and the moment the AC goes on in my home, I am ready to just take a nap! Sorry kids, mommy isn't feeling good right now.

Ya know what is completely doing my head in? Figuratively speaking of course. Because I am on Ty, I have to have an MRI every 6 months. That's fine. I had a brain aneurysm clipped in 2004, and have had numerous MRI's on the local 1.5 tesla machine since. That's fine.

Problem is, now the local radiology place has upgraded their MRI machine to a 3 Tesla - and my Neurosurgeon's office doesn't keep records that far back, to check whether my clip can take that much magnetism. That's not fine.

Radiologist says 'can't take the risk - out come if we get it wrong is death'. Once again, not fine - although I applaud his honesty and duty-of-care (he was the one who found the aneurysm as an incidental finding nine years ago - lovely guy).

They can do it on the old machine for the time being, but what happens when that is superseded?

Face it. I am only 44, and technology is moving FAST - what happens when the machines get too big - and how long will that be - five minutes at this rate???

In the meantime, I am scouring the 'dar-chives' of my filing cabinet, trying to find something that will tell me what I have in my head. I am sure I remember my doc telling me that I was safe up to 4-5 Tesla - I just have to prove it.

I'm with you there! I am so sick to death of being passed around with no answers. My PCP says if he could diagnose me I would be on medication already. The first neurologist basically told me I was crazy and overreacting. I am not!! If anything I let symptoms and such go too long. Which is probably why I've gotten so bad without a diagnosis. So, now some days I'm stubbling, falling down, and slurring like a drunk sailor... but no explanation as to why other than some crappy neuro telling me I "Had a stomach bug and got a little neurotic after googling symptoms". :mad:

I also hate that it takes so LONG to get into a neurologist for an appointment! I have an appointment with a new neuro the end of July, but have been waiting over 2 months for that one. I don't understand it really... it isn't like people go to a neuro for things that are minor or can just 'wait and see'.

REALLY hoping this next appointment is The One and I get some help.

Also, hate that I have really great days where I feel "normal" again and start to think maybe I am crazy or maybe it's over then wake up the next morning and it's "haha ... Iiiii'mmmmm bbbbaaaaccckk!".

whine & cheese continued
 

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.)

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

I want to biotch about something else today.:mad:. 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.:eek:

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..:rolleyes::rolleyes:

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.:cool:

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!
:mad:

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. :hug:
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. :rolleyes: (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!

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!

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. :(:mad: 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.

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. :(

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:(:(

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.:mad:

:grouphug:

Please look into wrist cock-up splints, something like these:
http://ak.buy.com/PI/0/500/230299401.jpg

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

had the carpal tunnel surgery already...I do my wrist exercises occasionally to keep everything loosened (when I remember to:rolleyes:)

I'm trying (when I remember) to think of what I CAN do...not what I CAN'T do. I've been reading (and finally finished) "the Power of Now" by Eckhart Tolle. He states that acceptance of what is can release you from getting enmeshed in it and prevent you from becoming a victim. I totally agree with him. He doesn't dismiss the pain and suffering; also says if you can change the situation, go for it; he just states to not get enmeshed in the wrongness or unfairness of the situation. It's difficult to do, I admit, but I agree with him.
Making the best of a bad situation is what it's all about..."deal the hand your dealt", "make lemonade out of the lemons you've been given"...all of those edicts are part of the same advice...otherwise, our misery is quadrupled by our enmeshment in the situation.
Now I am one of the best "Why me-ers" around...so I don't often walk my talk...but if I can remember even for an hour to practice this philosophy, I feel so much more at peace...at least until the next spasm hits, or I mess my pants uncontrollably:rolleyes::rolleyes:

LOL @ Debbie!!:D

I hate feeling a noticeable change that makes you feel the disease is indeed there and working to make your body slower and slower and nothing you can do about it.

I hate the injections and the meds I have to take. I hate the amount of time MS takes every day and working around crap, because of the MS. I hate looking like an able bodied, young guy walking with a "old man" cane and/or riding power scooters in the store and now feeling like a little child always reminding myself to go potty so I don't have an accident, but even then you never know. I miss doing centuries on my bike and now reduced to 20 milers and if I am lucky....a good 32 miler.

Craig, who used to be on here a lot, is a wonderful example for me of how to look for the good in life...he is struggling mightily now, but still finds things to be grateful for...he's a true inspiration for me.

I miss Craig. I looked forward to his posts. They were so uplifting and inspiring. I hope he's getting better now. I hate to hear that he's struggling. :(