Saturday, September 29, 2007

Lovely weather - sucky body

Hello all,
I love this weather! I love the start of fall and the sunny and 70 degree days. I am working hard and trying to spend as much quality time with my kids and its kicking my behind.

Yesterday I spent the day with my daughter doing fun stuff, walking a lot and the we went bowling. I was so sore. Then today, I got a burst of energy and said, "Let's all go bowling!"
By the time I was out of the shower I was so tired I wanted to back out, but the family was counting on it, so we went bowling. We paid for an hour - but my son only had enough attention to bowl one frame (he's 3 - what did I expect) and my daughter was trying so hard that I think she got tired, and my husband just can't bowl, so after the first game they went to the arcade area and I stayed to bowl a game and a half by myself. My legs are mean to me. My right hand betrays me. Of course I thought I was just sore and tired from running around the day before. So after bowling we bought some Halloween decorations for outside and then I cleaned off the porch and pulled weeds and got all yucky sweaty again.

During the Halloween shopping I had a couple moments where I would turn to my left and get dizzy - but it was like that electrical shock feeling too. Very disheartening. :-(

I went to take a bath (yes a hot bath because I love them even though they hate me) and as soon as my body hit the water I felt every pain every where. While in the tub I got dizzy again and again. To the point where I felt like I couldn't even move. It took more energy for me to wash and rinse and get up out of the tub as it did to bowl today. Then I just sat and cried on the side of the tub when I got out. My husband came in and asked what was wrong. He was actually pretty supportive.

Every time I have a "symptom" I would rather write it off to being something else. So I of course looked up MS and Dizzy on Google and of course can make you dizzy. I'm so sick of it.

My sister told me about The Secret... not sure if you've all heard about it... mostly just how to change thinking from negative into positive affirmations. I think I'm able to change my thinking in some areas of my life to be more positive. But it's really hard when it comes to other things.

I still get so sad. I know it's hard to beat depression. Maybe I am just depressed, maybe its not a hormonal thing. Today I felt great - until I got dizzy... and it's not like just a "stood up too fast" kind of lightheaded dizzy thing - it's just different - it comes with the shock feeling, through my body, in my arms, around my neck behind my ears. I lied back in the tub after I felt that and just tried to relax and all I could "feel" was like that feeling of exposed nerve. It's just that same feeling I get when I get that shock sensation when I bend my neck forward. That feeling is the one that just depresses me. I think that maybe its because if that is on the inside of me, I can't control it. i can't massage it out, I can't do anything about it.

I'm sorry, I'm rambling now. Before I started this blog I went through and was looking at how some of the other MS bloggers are doing. Looks like some of you are still having issues too and I'm so sorry.

On Mandatory Rest Period she has this blog on Stress... http://www.todmaffin.com/blogs/ms/2007/08/27/what-does-stress-to-someone-with-ms/
I really think it adds so much to this disease. But one of the aspect of stress and MS that will just never go away is dealing with the disease. None of us give up... so that adds an element of stress in just dealing with the day to day. I'm not unable to function, for which I am grateful, but I worry about the "when" of that. This is when I need to use "The Secret" and tell myself that "when" will never take place. I want to work and be successful and exceed at everything I do. If I forget something, I stress "oh my God, I forgot about that, is it MS?" If an hour after I wake up and start working I suddenly get so overwhelmingly exhausted I need to lie down and "rest my eyes", I freak out... I shouldn't be exhausted from working for an hour just using my brain and my fingers from typing and my eyes from freaking reading. All of that adds stress.

Then relationships - oh my GOD - I try to trust and that's stressful... I try to have a conversation with my husband and that's stressful (remember, he doesn't even read this blog - how supportive is that?), my relationship with my parents is stressful - just because I don't want them to worry about me and I worry about them. And finally - two kids, 7 and 3 constantly screaming... oy vey!! The other day I put ear plugs in just because I think the screaming is screwing up something else in my brain. Maybe I have a lesion on the area that is sensitive to sound and it makes loud even worse. Who knows.

Oh - and I just bought a new car. Our old protege was going to cost so much to repair just for end of year plate renewal and all that I went and bought a new car and now I'm trying to get money to pay the taxes to get it registered. And of course a new car payment. :-( SIGH... I could go on and on. So... yoga anyone? :-) I know - the whole time I've been writing this I keep thinking, I should do something about this stress.

Well, I'll stop now... I really hope you're all doing much better and taking care.

8 comments:

Unknown said...

Pamela,

I've recently received a CIS diagnosis and as you might imagine have been doing a lot of MS research.

I just found your blog today (can't remember how) and have been mesmerized by your candor and your conviction. It's very early in the 'journey' for me – and, of course, I don't know where it's going to take me – but your forthright documenting of your MS is a welcome 'real voice' to complement all the other information I've been exposed to.

You mention in a very early post that you don't know if you're helping anyone else – I can assure you that as of today you've helped at least one other.

Thanks for sharing your experience.

Chris

Pamela said...

Thank you Chris,
It's great to hear that my ramblings do help. Please take care and hang in there.
Also, please don't read too many of MS blogger "bad day" blogs. They can be tough and scare you a bit.
I need to be more affirming in my blog that other than my invisible symptoms, the ones that remind me I have the disease, that I'm also doing really well and I just need to continue to be positive.
Please take care.
-Pamela

Anonymous said...

Hi Pamela! I don't think I ever gave the credit stress in my life is due until now. I'm in a situation where the stress is the highest I have ever felt and it continues to grow despite all my efforts to change it. I can feel MS symptoms when the stressful situations hit and I know its feeding my MS. I just can't wait for more time to go by as I know my situation will be changed forever so I can live in the way I know I need to, to protect my life with my disease. But it sucks just the same! Hang in there... when the stress eases I know my symptoms do to.

Anonymous said...

Hi Pamela: I was browsing the MS blogs and came across yours. There is a group of us lately blogging on being positive and all that crap. You can have a bad day and still have a positive outlook....the bad day goes away with the next dawn and the positive outlook is still deeply embedded. Stop by my blog and take a look at the links - over 20 MS bloggers there.....and I've included you. Feel better soon,
Anne
http://disablednotdead-anne.blogspot.com

mdmhvonpa said...

Perhaps, you are burning too many of your spoons? Been there, done that.

Stephen said...

rant on. this is a great place to do that - we ALL hear you, understand, and accept. that's what we're here for.

Anonymous said...

im new im yolanda diagnosed 5 years with lupus although my primary swore from the beginning that it might be ms i dont know where to begin the pain the tiredness the burning sensation i thought i finally learned to live with it but last month i was on the treadmill and my rightside went numb and tingly after a few weeks i went to the e.r. told them it feels like im being shocked with a stun gun but only on 1 side my right side and when i bend my head forward.they didnt know what it was and seemed so disinterested but next week i get a mri with contrast .i am so scared because so many ms sufferers say they have had this same shocking feelings it is the worst. but these blogs were very helpful if not just to let me know that im not crazy i will post again after i see the neurologist and hope i get answers keep doin what ur doing because your comments is helping me get some sleep tonite. If you have any further advice or help feel free to email me 2154318952

Anonymous said...

Sorry nervous blogger..please email me at yepersonaltouch@aol