Processing on a Good Day

[Guest]

Today I had the first "good" day that I've had since the beginning of December.  There's no rhyme or reason to it. 

I got thinking this afternoon...."good" for us really doesn't have the same meaning as it does for everyone else.  

My "good" doesn't mean I feel normal.  For me, "good" means a day where I have a personality again.  It means that (as long as I don't do too much) I can laugh with my 6 year old son, and answer hours of his questions without being completely leveled after.  It also means that I vacuumed the floor AND had a shower in the same day.  

I really hope that when my little guy gets older, he remembers these "good" days, even though they're few and far between.  I hope he remembers what I'm like when I'm not dizzy, weak, completely foggy and exhausted on the couch.  

I think that's the hardest part of this for me.  I have for the most part come to terms with being physically limited.  It's been a long time coming, so not exactly a surprise.  What I struggle with is the way these symptoms cloud who I am.  I hate that my mind is always lost to some degree of fogginess.  

I'm curious...what part do you all struggle with the most?  Is it more the physical or cognitive loss?  

[Katybug]

I struggle with the physical limitations the most. I can get past my cognitive issues but I hate never knowing if what I have planned will be able to happen. And, what I have planned may be something as simple as doing my laundry. I have to plan one activity each day and if I'm not well enough to do it, the. I have to rethink my whole week. Right now I'm down to my last 2 Maxalt for migraine. I have to save them for Wednesday and Thursday because I have important doctors appointments those two days that I can't miss. I've had severe migraine pain everyday for 3 weeks so I know that I likely won't get anything done Monday and Tuesday because I won't have meds to control the pain. It's things like this that drive me nuts. 

[Guest]

That would definitely drive me nuts too!  I'm lucky that the migraines I often have are a weird kind, where I get an ongoing aura, but only break through pain here and there.  Once or twice a year I get a "normal" one.  I wouldn't be able to get anything done with that level of pain.  

Speaking of laundry....I've always wondered why there isn't a disposable alternative to clothing.  We have disposable plates, cutlery, etc.  I'm surprised a cheap, convenient, disposable option has never been invented for clothes.  Or it could just be the ADHD talking.  Lol

 

[Amalia01]

Draven,

Both the cognitive and physical limitations drive me nuts.  But, the cognitive limitations can be really frustrating at times.  I originally thought to use spaceace as my username because I am sooooo spacey at times.  It drives me nuts when I cannot process something simple or form sentences.  I often do not feel like myself either.  Children are more observant than we think sometimes and I think he will be aware of your efforts (and the fact that you truly care about his well being). IMHO.

Katybug,

Sorry to hear that you are having problems with migraines. I am too. That bites.

[dancer65]

My fatigue and cognitive issues seem to go hand in hand so I can have some quite good times and then I completely malfunction! 

Children are very sensitive especially with their parents they instinctively know when you are not well . In my opinion cuddling up together on the couch maybe talking, reading a book or just having a love is something he will never forget  and one of the best quality times with your child

katy really sorry you are struggling with the migraines, hope your appointments go well and you feel better soon

[statesof]

I definitely struggle with the physical limitations because they are more rigid where with my cognitive symptoms I can usually just push through it. Sometimes environments will be too noise or bright or just to active for me mentally and it kinda messes with how I'm feeling cognitively but I've learned to take it easier on those days and work with the better ones I have, though I do feel like I'm always working with a bit of a cloud around me. 

With the physical symptoms, since they are much more severe, they set a limitation on me not being able to do things I once loved to do; like exercise or go on hikes, or even just walk. And I'm not sure that I'll ever get any of that back, even just being able to walk around for a few minutes would expand my world hugely, but its a struggle to continually try and just work up through some yoga and floor leg exercises.

[corina]

Cognitive impairment makes me feel so sad, I so miss the old me! I think I can deal with physical limitations better than the cognitive problems. It often leaves me feel "stupid" which I find quite hard. Over the years I've had about three neuro cognitive tests (to compare) and the outcome is that I'm getting worse. I refused when they wanted to do another one a few years back, I know the outcome, no need to add the stress and bad feelings re this to my life!

[Guest]

Amalia01...YES!   It's even simple things like processing or forming simple sentences.  I am a teacher with 2 degrees, but have had to start using teaching strategies on myself.  On more cloudy days (which are often), I have to use a lot of special education strategies to be able to even somewhat process what I'm hearing, reading and writing.  And it all takes so long and so much repetition before my processing is even "ok" (not good, just ok).  I used to be able to whip out 20 page academic papers.  My memory is often so poor that I have trouble holding information in my mind long enough to put a complete sentence together in one attempt (hearing, reading and writing).  Math is a lost cause.  :/

Dancer65...I love that suggestion!   We spend a lot of time snuggling on the couch.  I'm not looking forward to the day when he's too old for snuggles.  

Statesof...you're right!  Physical surroundings definitely have an impact on my cognitive functioning too.  Stores are horrible for me...the business, confusion and fluorescent lighting does me in every time.  I have almost come to terms with the physical loss.  I was a very active, outdoors person, and have had to learn to enjoy things in less taxing ways.  The turning point came for me a couple of months ago when I accepted that my horse was too much, and gave her away to a wonderful home near me.  I haven't ridden at all in a few years, and the mental clouding makes it hard to be aware of my surroundings (not safe around horses).  It hurt my heart greatly to let her go, but it was a big breakthrough in coming to terms with it (the physical).  I still have days where I'm less ok with it, but overall, it's the cognitive issues that are bumming me out. 

Corina...I agree!  I feel like the old me is lost in a muddle of fog.  I often feel stupid too.  I know people instantly chalk it up to my blonde hair...which I'm actually better with than if they realized the truth.  I still have a lot of creative thoughts, but they're when I'm alone and nothing is being asked of me.  I can't "perform" on the spot anymore cognitively.  Over the years I've become really good at masking and deflecting it.  I think sometimes (when I don't come off as stupid) I am seen as shy...but it's my way of shifting the focus elsewhere.  I'm angry that "I" am lost behind the fog.  The last few days have been overall pretty good for me (which would be pretty bad for normal people).  If I could only improve one thing, I would choose to have my personality and cognitive abilities back.  

And thanks everyone for the insights on my little dude.  He's actually a very caring, empathetic little guy.  In March he planned and threw me a surprise birthday party (he planned out activities for him, my mom and I...which included a drive for coffee).  The most surprising part was that my birthday is in January.  

 

[corina]

That is SO sweet Draven!

[Amalia01]

That's adorable.  All I can say at this moment is that I can totally understand your feelings related to cognitive impairment.  Foggy.