Surgery planned for May...

[catkline]

Surgery is going to be planned for May – not sure on the date yet based on the doctor’s schedule.

** I have a question though:  does anyone have any idea why we are so tired from this Chiari?  I am so tired no matter how much sleep I get.   I was at the NS yesterday and so whipped out after we were discussing the surgery.  Too much info for this brain to handle at one time.

[niki3350]

I just love this answer its fab and sums it all up in  great way, kind of makes you remember that this is happening to our bodies and that it is not all in our heads after years of fatigue arms and legs getting weaker and weaker doing the most easy of tasks like washing yr hair, hoovering, cooking a meal, walking the dog, for a nl to try and put it down to mental illness is just absurd.

But we ave to plod on on this neverending rollercoaster to get belief.

[*Stormy*]

Glad I could help...it was a really good question!!

I have had surgery, I am 1yr 3mos post op but I still deal with the effects of fatigue. Now I have come to the conclusion that I need to include the fact that it is there and incorporate it in my life. For instance...if I have a tiring day and know I need to run the kids around that night, I make sure I lie down for at least 30 mins. I find that revitalizes me enough to get through the day. It's just one of the lifestyle changes I had to make and it is worth it!! The worst is dragging yourself around feeling like you can't last one more second on your feet but yet you still have hours to go. I remember holding back tears as I pushed myself on and with it came bitterness towards my family who really didn't understand. Giving yourself rest when you need it is huge...my kids just understand now that it's a fact of life. Speaking of...have you ever read the spoon theory? Someone directed me to it awhile ago and I googled it and it sent chills down my spine. Here is the Youtube version that I watched but there are others that are great too.
http://www.youtube.com/watch?v=xT-89ro75KM

You are not imagining the weakness, the thing is that it sneaks up quietly. I remember having to leave the gym during a step class because of sudden loss of power to my legs. Then, when I was running I started to notice that my legs were moving slower than my brain was telling them too (almost like stuck in mud). I thought I was imagining it all!! Until it got to the point that I couldn't deny it anymore..

Take care:)
*Stormy*

[catkline]

Wow....thank you for a wonderful response.  You gave me a great amount of information.  Have you or are you planning on s surgery?  I thought it was my imagination that walking up stairs was exhausting and hurt my muscles.  Even picking up my 4 yr old boy is hard and he's only little once!  My arms hurt just holding my iPod typing this!  Thanks again for the wonderful response!

[selmaS]

  Hi....great that u got surgery planned...please be sure to post the date on the surgery thread!!

Stormy did a great job answering ur question on the fatigue...pain causes us to be tired regardless of how much sleep we do get.And, many of us have periods of insomnia.

It is all a vicious cycle.....

  "selma"

[*Stormy*]

Hello

I'm glad to hear that you will be getting a surgery date soon..hopefully they will gave you a date soon so you can begin planning.

My theory on the fatigue: First, I am fighting chronic pain everyday to go on with my normal life, that in itself is tiring. Second, Chiari weakens your muscles and other soft tissue (ligaments, tendons) which causes you to have to work extra hard just to walk, do housework ect.. Third, most of us don't sleep well at night so we are constantly sleep deprived causing daily fatigue. If you add medications we all take for pain etc (most of them cause fatigue) then that just makes it worse. I know for myself, it feels like I hit a wall every day around 1pm...if I can't sneak in a nap (I have 3 kids) then I really function just on pure will.

So when you take all that account...I would be surprised if we weren't fatigued!!

*Stormy*