Brain Fog Week

I am declaring this Brain Fog Week.   This is one of my worst weeks experiencing fatigue and brain fog.   For those of you with MS, you have probably have suffered through this symptom.  For others, it is not simply "being tired"   (wish that it were!)    Think of the days when you pulled all-nighters.   Ok, now pretend you did 3 of those in a row. Oh, and let's pretend your not a 20 something that could do that easily.   Ok, Ok, now let's say your a 40 something year old.  And you had 3 all-nighters in a row.  And you now have to go to work and have a big meeting and then you have...........

See!  It is so hard to describe how this feels!   To me it feels like you took a sleeping pill when you woke up.  But then when you try to rest you can't sleep. Your brain is muddled and and you feel thick headed and slow.  Even physically it feels like you are trying to walk through knee deep mud.

I can always tell when I lose people in trying to describe MS fatigue.  I ramble on about how if feels and they already have that look like "oh, she's just tired"!!  It can be rather frustrating.

So, to those of you who have experienced this I say "Happy Brain Fog Week"  and hang in there.  For those of you who have not I say "I'm off to take another nap"  :)

My Fab Life with MS: MRI time, Brain Fog, Fatigue

My Fab Life with MS: MRI time, Brain Fog, Fatigue: Only 10 more days til MRI time.    I always am nervous and excited for these.  Excited to see if my disease modifying meds are working and n...

MRI time, Brain Fog, Fatigue

Only 10 more days til MRI time.    I always am nervous and excited for these.  Excited to see if my disease modifying meds are working and nervous about wondering if I'll have 20 additonal lesions on my brain (oh my).

Nothing to do but keep moving forward.  Hey, maybe that's why the MS Society keeps saying that!   Stay positive.   Well, as much as you can.

I have had the worst brain fog, fatigue lately.  For days I wake up feeling like I never slept and sleeping again within 2 hours.  Then getting sleepy again in afternoon and having a 3 hr nap.   My name's not Rip Van Winkle.  I wanna stay awake and not be foggy!   Much to do!  My neurologist has put me on a vitamin supplement (whose name now eludes me but it begins with a C....) to help combat fatigue and fog.  I've only been on it a week but don't think it's working since I can't remember the name of it.  And yes, the kitchen seems miles away to go look at the name!

My only advice on fatigue and brain fog (from experience)  is don't try and fight it.  Or work through it.  Most of the time for me it makes it worse.   If I just relax and let it take it's course I find that if I do that I am able to do my most important tasks of the day.  Maybe in small increments but I'm still able to do them.  

Good Luck and I hope you have a fatigue and fog free day :)

How's Your Day?

How your day??   Sometimes we MS'ers get wrapped up in our own little MS bubble filled with Dr appointments, fatigue, pain, stumbling into door frames (that was me this morning!!) just to name a few that we forget to see  how others are doing.   It makes me put my worries on a back shelf when I hear of others who have much more difficult issues.   It also (in my case)  makes my symptoms not feel as bad.   When I'm just sitting at home sometimes I feel worse.  When I'm around others in some cases I feel uplifted and revitalized mentally.  

So, with that being said how is your day? 

:) Teresa

MS pain, what a pain

Today, I am having a burning stinging pain in my neck.   Hmmmmmm MS pain or just a pain in my neck?  Oh, the joys of determining MS symptoms between "hey I'm just getting old" symptoms.   This pain has been off and on for 3 years so my neurologist thinks it's MS pain.  I'm still up in the air on that verdict.  I have been prescribed carb something which is a anti-convulsant.  For pain.  Now, I'm not a Dr.  but I dont have convulsions.  What I do have is pain.  a burning stinging pain in my neck.  Have I mentioned that???    Can't I just get a shot or something???  Oh, the joys of MS.  I understand starting at the bottom and working our way up through medications but c'mon!!  It's a BURNING, STABBING Pain in my neck.  Guess I'll just take TWO MORE Tylenol and go to bed.    :) 

Families and MS

Families can be your biggest supporters in your MS life and sometimes they can be the most frustrating.  I'm sure there are some of you shaking your heads yes!  I adore my family.  But there are times that is seems we aren't on the same link.   I refuse to blab on and on about my MS at every family get together.  I will not talk about it unless asked and even then if I'm have a super day I will brush it off and switch topics. 

Does it ever feel like on your worst days no one gets it?  Or on your best days someone will just hover over you like a nurse? 

There are just some days where I don't want to answer the phone, or come over, or even discuss how I'm feeling.  That's just the way MS rolls. 

But,  then I get flack for not answering my phone or wanting to go do something.  Hey people!!  there are some days I have MS fog  (NOT FUN) or anxiety because my arm and leg are numb. Or just trying to save up my energy to take care of my teenagers and finish up the day.  Don't take it personally!!!

On my good days I am the first to get out there.  Who wants to do anything?? 

My husband is notorious for asking me if I'm ok on days when I'm fabulous and not noticing when I'm "down". 

After several years of feeling family guilt I came to the conclusion that maybe they just don't know how I'm feeling.   Bingo!!!   Worked like a charm.  Now, all I do is say great!  when someone asks me how I'm feeling and when I'm not I will let someone know.  My family is the best and is a great support team.  If you don't have support at the right time it can be frustrating.  Talking with someone (either in your family or not) can really help the way you cope with MS.  

My link to MS Connections with National MS Society



The above link is to my MS Connections with the National MS Society.  I am an online peer for the newly diagnosed.  Feel free to contact me about MS questions!! 

I had another person or should say acquaintance today who proceeded to tell me "You look great!  You wouldn't even know you have MS!"   Now, I'm never sure but should I be annoyed or complimented???   It's great that "I look great".   I guess.  Is it a relief to that person that I look "normal" to them?   Am I being overly sensitive and should not take it any way.   (That's what the hubs says)  I guess my thinking is that I'm worried to death about my upcoming MRI,  I'm worried that my Dr. has taken me off Copaxone and we are waiting for a new disease modifying med to hit the market "sometime in Sept." My  left hand is as strong as my right hand, the left bottom portion of my face is numb as well as my right foot.  I also slept 3 hours this afternoon (unvoluntarily) and am still in a fog all just to hear "You look great".   Reading back over this it sounds more like my personal MS pity party.  I am grateful that people look at me the way they do.  I am grateful that no matter how my week or day was prior I am still able to "pull it off"  when I would really love is a cane and a couch!!

Oh Joy,   Only 21 days til my bi yearly neurology appt with an MRI.   Let the anxiety sink in!!   Will the Copaxone have been working or will my brain show new swiss cheese lesions?????    Some days I feel as dull headed and dumb as dirt so I assume that there are more lesions.   If not it would just mean that I am naturally dull headed and dumb as dirt!!!!   I vote for the latter. :)    Was just put on some new kind supplement for fatigue.   Curious to see how that works.  Also, Tegretol for stabbing,  burning pain in my neck.   Did I mention the STABBING, BURNING PAIN in my neck.  Some days its here and cannot even get into a comfy position to combat it.  Some days it is blessedly gone.   The Tegretol is an anti-convulsant med that builds up in you system and "might" show pain relief in a few weeks......Hmmmmmm  not digging the operative word "might" and also good to know that I won't be having convulsions.  Not that I ever did!!!!  MS is always fun about taking drugs for other things.
And lucky me has the Fatigue Fog today.  It's only 830 am and I am fighting it with all my might.  So guess I'll leave my nightie on :(    As you can see I am definetly feeling salty and rather shitty about my MS today!!    Oh, well hopefully by afternoon it will clear up. 

Welcome!!

Hi!  Welcome to My Fab Life with MS blog!   I figured since I blog all day in my head basically that it might be good to free up some space!!  My name is Teresa Hermann and I was diagnosed in 2008 with Remitting-Relapsing Multiple Sclerosis.  My left side from my forehead to the tips of my fingers went completely numb and my husband and I thought it was a stroke.  I was so unbelievably fortunate to get a Dr. in the ER who ruled out a stroke but was determined to pursue the symptoms.  Within a week he had an appointment for me with Dr. Harold Moses at Vanderbilt MS Center in Nashville.  Within 2 months of my symptoms and numerous tests later (the lumbar puncture wasn't so bad!!)  I was diagnosed with MS.  I have heard of people suffering for years before they find out they have MS so I consider myself blessed to find out so quickly!!   After going backwards through symptoms and years past I am thinking I have had it since my mid 30's.  Of course that is just a guess.   I have been on Copaxone injections for 3 1/2 years and I have an MRI coming up in a few weeks so I am anxious to see how it's doing.   This summer was rather difficult.  I have found the true meaning of "MS Fatigue"  Wow.  Not fun.  And have had balance and numbness issues for last month.  After the first year of diagnosis being terrified of a life in a wheel chair I have figured out (somewhat) what to do to head off or help symptoms.  I also have most importantly cut out the majority of my stress by simply not surrounding myself with negative thoughts or people and working hard to not think much about stuff that stresses me.  Hard but worth it!!!   I also am now a Online Peer for newly diagnosed MS patients through the National MS Society which helps me know that I'm not alone!!   With all that being said, Welcome!!