The Brain Fog

I’m making soup for my daughter and hubby.    I rarely cook so this is a big deal.   I cut the veggies.   I add my spices and broth and note that I need more broth.   I walk from my kitchen to the pantry which is literally 15 steps, open the pantry door and…. my mind is blank.   I walk back to the kitchen.   Then I remember the broth so I walk back to the pantry, open the doors AND blank…. I can’t remember shit.  I walk back to the kitchen, remember I need the broth… scream out FUCK!!!  Almost run to the pantry while the thought of broth is still on my mind, open the doors and grab the broth in a panic.  FINALLY! Task completed.   It only took 10 fucking minutes. 

Welcome to a day in the life of Brain Fog.  This is asshole Brian Fog who enters everyone’s life at some point… {usually due to sleep deprivation or when the age monster is comin to get ya} however for us Invisible fighters {autoimmune diseases suffers} this is an everyday occurrence.  Brain fog is not a medically recognized term but is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity.

Brain fog happens to the average person who is lacking sleep. When they catch up on sleep they’re back to normal brain power.  We Invisible fighters… towards the end of the day or on a day where we are struggling, most of us can’t even finish a sentence without forgetting what we’re saying, and\or stuttering.   Brain fog is basically what it sounds like; it’s fog in your brain that is clouding your thought process and disturbing your communication skills.    Many times when I am in the middle of a session with a client where I am on fire with providing great suggestions or challenging them regarding their own insight, all of a sudden I can’t get the words out.   Out of nowhere I appear to have a speech impediment and\or language barrier.  In that moment I just want to scream “I know the English language, I swear!  My brain is an asshole with a dark sense of humor!”   I’ve had friends and family members make fun of me and\or correct me.   BUT that stopped after they got the “don’t fuck with me “look and\or the “how the fuck can you be so insensitive” speech. 

 I have now created my own language; “pass me the thingamagigers… I need the whatchamacallits… those thingies”… also pointing and moaning has become quite common.    My admin assistant has learned to speak my language fluently.   It’s quite accommodating and refreshing.  My husband still needs practice.

If you are a great communicator, this is very frustrating.   For me, I take a great deal of pride in being able to reach others through communication. I have a gift where I am able to connect with others using my words.  When I can’t speak because I’m stuttering or forget what I want to say, I feel stupid and uneducated.   It’s extremely embarrassing.   I feel as though the disease is not only taking over your body but it’s also mocking me through fogging up my mind. 

This happens because of chronic fatigue but there are other reasons for it as well.  The average person who is suffering from a chronic disease doesn’t get a lot of sleep.  That sleep is disrupted by pain.  In dealing with the pain on a daily basis, trying to ignore the pain, and\or trying to cope with the pain also causes brain fog.  When you are in constant pain you give off a hormonal response that triggers your endorphin’s.  Your endorphin’s are a short term pain killer but if you’re in pain all day eventually those endorphin’s wear out and you produce another hormone (cortisol) that can make you quite angry when high levels are made.    Just ask my husband…. I have become quite the angry woman since Mr. Lupus and Ms. RA made their long unwanted visit.   

Several of my friends have now noticed when I hit my “wall”, the brain fog wall.  It is infrequent and illogical.  I don’t give much notice.  All of a sudden I am disrupting my husband or whomever I am with stating urgently that I need to go and NOW.  At this point; I have nothing left in me, no spoons {another blog to come}, no patience, and no mind.  I cannot process anything and therefore need to shut down.   There’s no real warning sign, you go from tired to non-functioning.    So if you ever met someone or are with someone who suddenly takes long pauses when speaking and/or stutters and/or mispronounce words, the Brain Fog may have taken over or they may just be an Invisible Fighter…. I actually think of them as Invisible Hero’s

 

Self-Pity in Chocolate

Peggy Bundy had it all figured out {the show…married with children}   Do nothing…   No housework, no cooking and no cleaning {well I can’t do that…seriously not possible}, while lying on the couch in front of the television eating Bonbons.   This is my kinda party… the pity party. 

My pity party is a private party for me, myself and I.   It consists of comfort food; chocolate, popcorn, chocolate, and sometimes ice cream  along with a complimentary box of tissue.  There’s no alcohol at this party and\or other substances {plus my addiction or substance preferred is shopping…retail therapy… which is my husband’s worst nightmare}.  Strictly water is permitted and encouraged to replenish the water loss from the waterworks eye show.  

 This usually occurs after I have suffered for several days consecutively and that one morning…simple tasks are  just extremely difficult and utterly frustrating.  I then know this is going to be a bad day.   I’ve been fighting hard but I just accept that Mr. Lupus and Ms. RA have won today.    So I put on my “fake face” for my daughter and see her off.    I go back to bed and sleep until the early afternoon, then move to the couch with my comfort food, water and tissues.  I watch all my sappy shows {This is US … sooo fing good} so I can ball my eyes out.   I’m not talking that cute cry with big sexy like tears.. like in the movie…looking all sultry and shit.  I’m talking the big nasty ugly cry… eyes swollen; nose running snotty face …where people would be afraid to approach you even if they were able recognized you. 

The pity party is therapeutic.  It’s a time to cope with all the emotions you’ve been pushing back and under the rug for the last several weeks.   It’s a time to allow yourself to have a “real “moment where you’re not putting on a front or a show.   This is where you feel your real emotions of resentment, anger, pity… It’s the “feel sorry for yourself phase”.   Not only is it OK to do this.   You NEED to give yourself permission to do it.    For me, these pity parties are essential for my mental health.   They give me the strength to move on and continue my “mind over matter” strategy.

A couple of hours before my family arrive;  I get myself together by putting the tears and self-pity away.    I start my “ positive self-prep talk”.   I remind myself that everyone has a story and mine could be much worse.   I could already have hands that are disfigured.  I could already be crippled instead of it just being a risk at this point.   I remind myself that I’ve been fighting my ass off  and have more points on the score board then Ms. RA and Mr. Lupus to date.  I remind myself..I AM winning!.. and today is just another indicator of that.  I also thank myself for the emotion cleanse and remind myself that I deserved this day BUT tomorrow we are back to KICKiNG SOME ASS. 

So enjoy your pity party.. and get the good chocolate.   Bad chocolate just makes you feel worse. 

“Tired”

I think everyone at this time of year can relate to this; FEELING TIRED and ALWAYS being tired.  

Every morning when I wake up, the first thing I say to myself, “I can’t wait to go back to bed tonight”.   I am so tired.  Pretty much ALL of the time.  I can remember working my multiple jobs, partying my ass off and returning to work after 4 hours or less of sleep; and not feeling A THING.  I was perky and springy as hell.  NOW if I stay up past midnight, I have the worst hangover even though I did not partake in any substances… except Advil.  Advil is my best friend.    

You can contribute it to the time of year.   To the weather.  It’s certainly the grey ass skies… day after day and every day for months on end.   It’s working and dealing with the pressures at work.  Its stress.  It’s lack of vacationing.   It’s raising a family.  It’s financially budgeting, and it’s a thing called ….LIFE.   Life is wonderful and mesmerizing, although it is VERY challenging.   I have this exact conversation with my friends all the time…  Where we question; is it more tiring because we’re older?  and with age comes aches?  Is it because we have a shit load of responsibility? Or is it because of autoimmune diseases\chronic illness\health related issues?

When you Google tiredness; Rheumatoid Arthritis rates 5thout of the 10 top reasons for tiredness.   Depression rates 4th.   Anemia rates number 1 and Chronic Fatigue rates the 6th reason for being tired {I find this an hmmm… moment because most autoimmune diseases cause chronic fatigue}.

As we get older, we get busier.  Since we a busier, we’re tireder??   LOL {I know that’s not a word… I like to use my rhyming skills}.   We plan everything {ok fine!!… not everyone plans everything.  I plan everything about everything for everything…so what? }.  

The reality… we live a fast paced life.   We race against the clock… every damn day.    We run errands on our lunch, in between appointments and on the way home from work.   We rarely have time for ourselves.  We rarely watch shows at their appropriate times because we are too busy doing something else and we can PVR {record} it.   We don’t even shop in stores anymore, we buy everything online.  WHY?  Cause it’s more convenient and because we don’t have the time.   Although, it’s really a catch twenty-two because we spend more time staring at a screen and\or smart phone where we get instant gratification which also causes TIRED BRAIN.    A great majority of us are busy with children and all of their activities.  We have them in so many things to ensure they have several opportunities to explore themselves that we lose their cues of telling us they just want to stay home and play with their toys and\or outside with the neighborhood friends.  AND we do this until we have empty nests and\or retirement. 

We have all know what we need to do for more energy….

  • Drink 8 glasses of water daily… I try but it’s hard to do when your mouth is open all day because you have to speak to people constantly.
  • Exercise… ummm ya but it’s a vicious circle. Who wants to exercise when you’re exhausted; especially us chronic illness sufferers.  I suggest  starting as a  last minute decision when you have a day\evening when you’re feeling generally OK.  I swim.  It takes the pressure off my joints, doesn’t hurt during the activity, it’s a cardio\resistance exercise and it’s my serenity.
  • Take Vitamins… Vitamin D does wonders. I swear by it!!
  • Sleep 7 to 8 hours… This is another catch twenty-two. We work late; we make dinner, we have chores at home that need to be done even if they are the bare necessities to function.  If we have children, we support them through homework and bedtime routine.    For me, once I complete all my chores {and for those who know me… I actually do leave some chores … not many…but I do}, ME time starts very late so I’m not getting to bed until later.  Me time is essential for my mental health.   If I don’t get some ME time, people do not like me.   I am one nasty, resentful biatch…and scary too.   There’s also partner time to factor in. 
  • Eat well… blah blah blah… we all know this. We all try to do this… but chocolate or whatever is your pleasure is just sooo damn good.  AND a drive thru is convenient isn’t it.  

There are a number of things we can try to do to get more energy.  The brutal truth though… we need to change our lifestyle in most cases.   In order to do that, you have to make life changes that are easier said than done.    We live in a Society where money is key.  Everything costs money…every freak’n thang.    I for one, am willing to make some of those changes.   I’m tried of saying “I’m tired” every time I’m asked how I’m doing.   Aren’t you? 

” Care of Self”

Written  between Jan 27, 2017 and Jan 29, 2017

Its 220pm.   I’m sitting at my desk anticipating my 3rd and final biweekly infusion that starts at 3pm. After this, I go every 4 weeks.    I am anxious.  It’s odd; I’m generally not an anxious person unless it’s about cleanliness and organization.  I truly despise dirt and untidiness.     I’m not afraid of needles.  The IV pain is tolerable.  Why am I anxious?  As I ask myself “why?”, my eyes tear up.  My inner voice says “because this is fucked up!  That’s why!”    I guess I haven’t really come to terms with this.  I feel good in between infusions but the day of… I’m antsy, unable to focus and quiet {not me at all…I’m quite loud}.

Recently, when I was explaining an infusion and the process to a close friend, she said “This treatment is your own form of chemo”.   That really sunk in. It really hit home because chemo is a therapy used to keep cancer at bay and put those people affected in remission.  The use of infusions… same goal.   Once again, I think “how the fuck did I end up like this?”

When I take emotions out of it and stick to just logic, I know that I have contributed to this in some manner.  I started working at the age of 13.   By the time I was 18, I had multiple jobs.  When I was 20, I had  5 jobs while attending College fulltime and this continued until 31 years of age.  Why?   I grew up in the system on welfare. I had to start contributing financially or my mother would lose her housing subsidy.  I refused to be a part of that world, so I hustled.   For 10 plus years my average evening of sleep was 4 hours.   I rarely sat down to eat.  I wore 5 inch heels for 12 hours daily {greatest days of my life.. sorry I haven’t mentioned my shoe\heel fetish.. 300 pairs of shoes.. that’s another blog to come :P} and pushed myself every day to the limit.    By the age of 25, I had stomach issues and 2 significant bruises on my right arm.   I was told the bruises were eczema.   I didn’t question it further.   I was young, invisible and had no concept of self-care; one of the only moments that I regret.    I don’t regret the hustle and the life experiences it gave me.   The reality is I wouldn’t be where I am today if I didn’t hustle.    Since I left my mother’s care, I have never needed any assistance from welfare.   I got out of the system.  One of the greatest accomplishments in my life.

I do regret my lack of knowledge and\or care for my physical being.   When the stomach issues started I was told, take breaks, eat while sitting down and get more sleep.   I didn’t.   At the age of 31, I knew those bruises were more than eczema.   I was getting married and wanted them gone.   Well my dermatologist did his job and discovered\diagnosed Mr. Tumid Lupus.    Mr. Lupus had made his mark on me since my middle 20’s, and I went years without treating him.   Again, I don’t regret the hustle, but I regret not listening to my body.  I regret not taking the advice to slow down a bit.   I regret not sleeping a little bit more.   Now…I know my body inside and out…lesson learned.  I know it so well in fact, I knew I was pregnant with my little Bum Bum {daughter’s nic name} within hours of conceiving and 1 1\2 weeks away from Auntie Flow date.   My doctor thought I was insane…

The reality is… self-care is important.   Work-Life balance needs to be front and center of all of our lives.   Stress causes 99.9% of disease.  North American’s are the leaders in autoimmune diseases, cancers, heart and stroke.  ” Why?”  Because we live to work.    We spend less time on self-care, appreciating family, nature, all in all…life really.   We don’t smell the roses, instead we count money and it’s literally killing us.   I still work a fair amount… that’s the world of Child Welfare\Social Services.   BUT I am very disciplined in my life-work balance.   My family comes first- no matter what.   My health comes first- no matter what.   I do not work at home once I get home from work.   When I am sick – I am sick. I stay home and care for myself.   I take every day off that I am privileged to have and I ensure I do things that make me happy {shoes, travel, shoes, movies, ummm shoes}   I laugh as much as possible.  I make myself go out even when I have feelings of isolation and depression.  I surround myself with those I love and who help keep me afloat.  I get rid of the negativity… including people.  I want to live as long as possible and in order to do that,  I need to live…not work.   I need to care for myself before I care for anyone else.  How do you care for yourself? Really think about that question.   You may be surprised with your answer…

Who’s got your back??

Written  on Jan 22, 2017

It’s been an emotional roller coaster this week.   With Trump being sworn in and Obama leaving, the incredibly massive women rights march, and a surprisingly unexpected starting of a significant relationship that will now become a long distance one.   With emotions that are global and some personal; it feels as though a whirl wind has entered my body and stirred up an emotion party. 

Even though I am Canadian, I am afraid with what Trump might have in store for his Country.  I’m not going to lie nor pretend that I am not concerned for my geographical neighbors or that I’m not concerned for us, Canadians.     I am an extremely empathetic person.   I love mankind and feel for all those who suffer and are enduring hardships.   My demeanor, the tough exterior I play, is my defense mechanism.   It protects me from becoming a puddle and allows me to function.  My mother and father both, were activists in the civil rights movement, and with being an interracial couple this caused them to experience many defeats.   BUT they didn’t give up; many during that time stood for civil rights and won.   Yesterday’s show of inclusiveness was abundant.  It was overwhelming and enlightening to observe; all races, genders and creeds standing up for all women.  People all over the world took a stance against the recent threats made against women, their values and most importantly their choices.  It was one of the most powerful events to witness.  This triggered many  occurring events in my life, decisions I’ve made and it made me think of the relationships that surround me. 

In my 43 years of life, I have pondered the meaning and evolution of  my relationships often.   I have come to the realization that each individual has a different definition of relationships and in that,  there are no errors…. just differences.   Everyone that comes into your life whether it be short-term, long-term or for a quick moment, has value.   The purpose is for you to take that value and apply it as a lesson to enhance your being.    As I evaluate my relationships, I realize that each relationship has its own function,   and that my expectations in that relationship are my own and I cannot compare nor transfer those expectations unto others or presume that because I am the common denominator in those relationships that each one will function the same.

When you are chronically ill, it changes your relationships.  You begin to assess every relationship based on loyalty, understanding and support.   Well…understanding a chronic illness is difficult especially when it’s invisible.  Most people cannot understand what they can’t see.  This sets them up to fail.  Unfortunately it is up to you whether or not you allow them to experience your vulnerability.  You will have those relationships that will hold you up without you needing to ask and you will have some where asking for the support is a perquisite to receiving it.   You will meet someone who you bond with immediately and some you can’t fucking stand at  just one glance.  You absolutely will have loved ones who will need to hear how you are every day, and some that can’t deal with your pain. 

  This is life, take it at face value.  I have many friends that only have to look into my eyes and know that I am full of shit about my pain and many that have no clue.  Although… I do have to acknowledge that every single person that I have allowed into my life would have my back… all I have to do is ask.  They would do anything for me and love me in their way.  

You cannot get through life without love, support, and acceptance.   You cannot deal with your disease alone.   If you were to assess your relationships in this exact moment… who’s got your back? Who would stand for you?   Who would march for you?  If you can name one… one can be enough.   If it isn’t… find them. 

Get Up.. Stand Up..Don’t give up the Fight!..

Written on January 12, 2017

It’s very easy to give in.  It takes no effort at all to give into any weakness of any kind.  How many times have you given into some desire or trigger?  How hard is it to take a stance, strengthen your backbone and use self-discipline?  It’s tough as hell.    Sometimes it’s the greatest challenge one may face in life.  It feels near impossible at times to fight back.

Just this morning I woke up with the shakes and slight dizziness.  This usually means that I have not rested enough, my muscles and joints are screaming “go back to bed!!”.  Usually it goes away within a few minutes but it lingered for several hours this morning.   During my  infusion orientation (IV therapy) , the nurse explained, “ if you suffer from chronic fatigue, this  kind of fatigue will make that look easy and you might get dizzy\light-headed”.    So.. I have been  very tired.  Bone ass tired but this light-headed symptom is new.  Now…  I could have easily called in sick to work  but I chose not too.   “You’re not wining today Ms. RA”, I thought to myself.     

 I make myself go to work everyday.   I see it as motivation, one of my drives to fight my RA.   It took me 3.5 hours to walk through the office doors today.   I took a shower and  rested a little;  I brushed my teeth, put on my moisturizer and rested a little,  I did my make up and  rested a little more….  “I think you get the point”.    3.5 hours !! …That’s what it took me but I made it.   It was my goal for the day  and I succeeded and it felt good.   I have a great supervisor, who in the beginning (3 years ago) would say “why don’t you stay home , rest and take care of yourself”.  I would respond with ” I will when the pain is unbearable but as long as I can tolerate it, I need to get here, no matter how long it takes me.  I need to do this”. 

I refuse to allow Ms. RA and Mr. Lupus to destroy me.  Depression and suicidal ideation are significantly high for those surviving a chronic illness.  The illness overcomes you and manages your entire life.  If you allow it, it will drain you of all happiness.  The depression is at times, unbearable on its own.  BUT I fight it.  I fight it with everything that makes me happy (some of the things I’m not suppose to do; like wearing heels..I do it anyway) and that beats it back for a little while. 

What makes you happy? what motivates you?  What will give you the strength you need to push back?  My daughter and husband are my strength.    They need me to be well.   My daughter needs a mother who is mobile and present.  My disease doesn’t touch her.  It affects her life in very little way.   The only think she knows are that my hands hurt and do not function well.   I might not be able to participate in every activity with her but I am there, watching, smiling and laughing.  My husband and I are life partners and I need to be filled with life for him.  I need to live my life.. for them… for me.      Honestly, there are many times that I can’t win that day’s battle.   So I accept it on that day, and I have a pity party ( another blog to come).  However,   I DO give it my all every single fucking day.  

Ms. RA.  and I have a score board in play and I have to be one up on her at all times! *big ass grin*.

 Autoimmune diseases affect everyone differently.   You may not be able to work or sit for hours at a time or walk or even wash your hair without feeling intense pain but every and any attempt is a success because you tried and that’s all that matters.  For that one moment… you won.    Whether it’s brushing your teeth, or sitting  up watching your children play or walking outside for 5 mins, it’s a way to fight back. 

Your life has purpose; don’t allow your disease to steal it from you.  So just every so often ” get up, stand up and leave that chair empty!”.

 

photo credit\CNphotography

 

 

 

Just a wee thought

Today is another infusion day.  I am sitting at my desk as we speak, feeling the anxiety approaching.  What if they can’t find a good vein?  How many times will I be pricked?   It took 3 tries, last time.   Not the nurses fault – my veins suck.  “ I hate bruises” * in a childlike voice*  I feel like a sponge.  Prick, prick , prick…  “Hide your skin!! Hide your veins!! They’re coming for your blood”.  I’d wish they’d come take the fat.

Enjoy your weekend.  Do something that makes you smile!!!

 

photocredit\CNphotography

Raw Infusion

Not in million years would I have thought that I would be sitting in a clinic with an IV in my arm, about to receive my biologic medication.  Not once in my young adulthood did I think an illness or disease would interfere or interrupt my life.

What young adult at the ripe age of 25 looking ahead towards their future thinks …. Autoimmune diseases???   At that age I loved shoes, dancing, men and travel.   At that age I knew that I would be renting an apartment and hustling to make ends meet.

Never in a million years ..Autoimmune diseases.. HTF (How the Fuck) did I end up here??

I have RA.  I’m 42 years old with severe progressive rheumatoid arthritis.   My body is at war with itself and my insides are of an 80 year old.. Sexy huh?   I PRETEND a lot..  I pretend that I’m not terrified or alone or that this disease and its friend Lupus haven’t ruined some of my best attributes and ambitions.   I pretend that I am fine.    Isn’t that what we do?  As humans we lie to our loved ones to protect them and to protect ourselves from the pain that the truth brings.   So I pretend for my daughter, my husband, all of those around me and even those who don’t even know me.. but mainly for myself.   I pretend and lie that I am fine and have no fear of what these diseases will take from me next.  I’m a wonderful actress for I have fooled many…..

So after fighting for 3 long years against “these” medications, I give in and now awaiting for the first infusion (IV therapy).  I pray that this medication will give me some time.  RA steals your time.  It gnaws at you first thing in the morning and intensifies as the day goes on.  By the evening you have no energy, no pleasant personality and no desire to enjoy “your” time.    It may have come across as though I am giving in or have let these diseases win… not fucking likely… I am a fighter.  I fight every day from the moment my eyes open to the moment they close for rest.   I love my life and I refuse to have all of it stolen from me…

 

photo credit\CNphotography