Am feeling a bit fearful...

[timer lady]

this morning. Just need an ear or a shoulder to lean on if you have one available.

I spent since Friday evening dead asleep. I've had my moments of being alert - never quite awake. husband told me that he's worried over the level of confusion I present along with the weakness. My hearing seems to be worsening as well - even with my aids in I struggle to "hear" what is being said.

He's researched the Susac's syndrome & apparently there is dementia listed as a symptom; he's concerned for me. I purposely avoided any research until I felt stronger.

In the meantime, I remember little if any of the past, what is it, 36 hours. More than likely it's the sleep with the medications thrown in....

I told husband that I didn't want to know the details of Susac's at this point. I'm angry & frightened this morning. I want to live in the "cocoon" of treatment letting the medical professionals & husband take care of the details.

My brain cannot seem to handle details. They hurt my head. I need a paintbrush for the moments I'm awake; a decent pillow when my body is pushing me to sleep.

Thanks for listening to my early morning ramblings ~ my HMJ is freshly brewed & it's time to pour a cup.

 

[meowbunny]

I won't go into details about your illness, but I did do some reading on it. From what I've read, your symptoms will go away. It will take time but you do recover and get more of the old "you" back.

I am so sorry you are suffering through this. It is hard to be a wife and mother when healthy, to do it when ill makes it feel like a truly impossible mission. If anyone can get through this and make us all stronger with their courage, wisdom and humor, it is you.

Give husband as much comfort as you can. It sounds like he could use some extra hugs, too.

Enjoy your HMJ (by the way -- what IS HMJ?). Take your naps when needed.

(((((HUGS)))))

 

[1905]

((HUGS))))So sorry you feel so bad. When you have a serious illness, you need to take care of it. Listen to your body and don't feel guilty. Everything will be handled by husband. I know the feeling of wanting to be a wife and mom like you always are, but in order to get better- go with whatever your body tells you. Meowbunny said it goes away. Can you hold on to that? I was on chemo and spent 6 months in bed or laying down. I wasn't able to be a parent or wife, and the guilt of that -I had a 1st grader, 3rd grader, and an 8th grade difficult child- was the worst of it. I didn't want anyone to see me like that. But others stepped in. husband will help you.(((hugs)))Take care-Alyssa

 

[Lothlorien]

No words of wisdom, just gentle hugs.

When are you supposed to start the injections?

 

[Big Bad Kitty]

How about I give you just the biggest hug that I can. For as long as you want.

 

[donna723]

Linda, I don't have any words of wisdom either ... but I do have lots of cyber-hugs and a shoulder to lean on if you need one. Getting a diagnosis is the first step towards getting you well and back to your old self again. It WILL get better.

I can't even imagine how difficult this must be for you. But the strength and determination you've shown in dealing with your kids will get you through this too. ((((Hugs)))

:flower:

 

[crazymama30]

Just vent away. This is a safe place to just get the feelings out. You will get through this. Just try to rest, if you are tired it may be what your body needs.

:flower:

 

[TerryJ2]

Oh, Linda, I am so sorry.
It does sound temporary, though.
Try to hold on to that thought.
Take care.


:bath:

 

[Star*]

Linda,

I can't possibly imagine what pain you are enduring. I do know that when our bodies sleep - it's a natural way of recouperative healing. Since you are used to be energetic and youthful, active and all - this seems very abnormal.

I would like to think it's just your bodies way of saying "HEY Linda - we're going to fix some stuff now - and you just can't be here to negate anything we do, nite nite."

Hugs for you today my friend - Always in my prayers
Star

 

[hearts and roses]

Linda, sending some more hugs and support. Like everyone has said, sleeping is not necessarily a bad thing - your body regenerates itself. And once treatment has commenced at least you know you will feel better soon.

Let husband take care of you; tell him you aren't ready to hear about the changes going on just yet. I'm sure he understands.

Be easy on yourself, it's okay to not feel like "you" for a bit while your body heals.

Hugs~

 

[Steely]

Just wanted to tell you I am thinking of you, and praying for strength and healing to be sent your way. I am so sorry you are struggling with this, but you are a fighter, not just a warrior mom, but a warrior person - and you will come out on the other side of this stronger, more able, than ever before.

 

[Hound dog]

Sending you extra warm gentle (((hugs))).

 

[nvts]

Linda, don't worry about the sleep - you seem to sleep in snippets for weeks at a time, you shouldn't worry about what I call a "crash and burn".

You're smart not to research too much until you're feeling up to it. If your mind is truly scattered right now, you could possibly fixate on something that might not be correct. Let the pro's handle it for now!

Many hugs!

Beth

 

[totoro]

I am thinking of you.... I hope you can spend some time creating some beautiful pictures out of this pain and release some of this. Hugs to you also.

 

[Wiped Out]

Linda,

Sending many gentle hugs your way. I wish I had a magic wand to make you instantly feel better. Prayers for your healing are being said daily. :angel:

 

[busywend]

Linda, fear can do funny things to us. I am glad you recognize it. I am sure I would be fearful as well in your shoes.
I think you are wise to let the docs tell you what to do and not do. You just keep it simple and relaxing around the house. Still frustrating, I am sure. But, less to worry about. Let them worry.

Sending hugs and strength your way!

 

[Suz]

<div class="ubbcode-block"><div class="ubbcode-header">Quote:</div><div class="ubbcode-body">I want to live in the "cocoon" of treatment letting the medical professionals & husband take care of the details. </div></div>

Linda, this sounds like a very good plan to me.

Gentle hugs,
Suz

 

[KFld]

Sending hugs. I hope this goes away quickly.

 

[timer lady]

I'm no longer trying to make excuses for the emotions I'm feeling - they are emotions & happen to each of us. I do know that I'm more emotional of late.

And - I'm sorry 200 cases of this syndrome doesn't give me a great deal of confidence. And that may change tomorrow along with my mood. Neurodoc told husband that I would be one of the oldest persons to be diagnosis'd with this syndrome & that what may work for others may be a different monster for me. Again - not feeling the warm fuzzies.

But I do have a diagnosis - a treatment plan. The sooner I get into Mayo the better.

And thank you for tolerating my ever changing emotional situation. I know it's getting to me - I appreciate you letting me get it out of my systems safely.

Suz, husband & I discussed the cocoon idea - he's willing to a degree. husband promised me that he'd kick my butt out of there when necessary. I agreed to come out if necessary.

 

[Marguerite]

Like a lot of the others said, sleep is how our bodies heal. When we have a lot of healing to do, we sleep a lot more. It works. Let it happen. I also did some reading - "self-limiting" are lovely words to read, when you're worried.

Marg