Golden Girls

Thank you Tamika - for patiently waiting as we changed my blood script, who convinced me I could do four more tubes - for being really good at what you do and doing it with a smile and compassion - but thank you most for your reference to the Golden Girl's Chronic Fatigue episode...who knew....they always said that show was ground breaking and here it goes again - this is the You Tube montage of the best clips from the two part episode Sick and Tired...thank you for being a friend....time and time and back again...

Golden Girls

We are in good company once again, after two seconds of Google, found out that the episode was written because the creator of the show Sue Harris was at that time going through the web of figuring out she had chronic fatigue...Sue Harris

Unfortunately, 23 years after this episode, us patients still are dealing with the exact same issues.  Let's hope the tide is changing.

Joy Gift

Addendum...after writing the Golden Girl post I am now wondering if I am channeling Bea Arthur - or Betty White when wearing this robe...

Thanks MP for the Fancy Robe - It reminds me of when I was little and you would take me to pick out a birthday outfit and I picked out the lavender two piece sweat-shirt material top and skirt with embroidered hearts on the base of the skirt  and the sleeves- and the fancy feathered slippers!  This was mid crash - I didn't want it to share the same page as the Live Loud Post.  But its the after shock I hadn't anticipated I would be dealing with later in the day.  I wanted this post after Live Loud - but can't figure out how to move it. 

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

I took this from another blog I recently found and her description of the beginnings of this illness brought me odd comfort today...because someone understands...here is the link - check it out..."My World" and though it is her world - it is the shared experience of dealing with and conquering this illness that makes it our world.

Crashed

Fancy Robe Lifts Spirits

Hope Challenged 

Live Loud

One wrong move and it all comes tumbling down.  I don't know why with this illness it takes so long to believe you are really sick.  For me, if I am honest that is probably where I pull my hope from - if I don't really have CFS/ME, if I only kind of have it, then there is hope I don't have it at all and tonight when I close my eyes and drift towards dreams I will wake up with a new reality.  I know why part of this is true, when doctor after doctor, the "authorities" almost like a reverse Stolkhom Syndrome tell you - you can't be because, its hard not to believe them.  You can't be hyperthyroid because your TSH isn't off.  You can't have chronic fatigue because you have a few good days in between.  Maybe believing their lies was easier than owning my truth.  I am sick.  And on days like today when circumstances caused a slight alteration in the schedule, which meant you got over hungry and by the time you got home you are trying to take in calories and sugar like someone who has been on a deserted island - that after you are fed, it doesn't matter - you lost.

People always think you are anxious or over reactive or cautious, you live your day to day life on the brinks of fight or flight - because when you aren't prepared - when you didn't bring a sandwich to the chiropractor and you were already emotionally spent putting out energy so your Birthday Girl niece won't know you feel a bit shaky - that delay, that unpreparedness your body takes that moment and like a system that short-circuited you start to fall.

Half of bagel and ham sandwich, water and juice, a cookie, baked chicken, some pasta, your brain is spinning you can't keep a coherent thought...you are spinning downward and trying to claw your way out but its too late.  You pushed your system when it couldn't be pushed and now you must wait it out...wait to find its way back..You sit first on the sofa, then realize you must lie down still perfectly still.  Your entire body feels like it is mildly shaking, its been shocked - you pushed it too far on the wrong day - Your mind and your body are at war.  Two hours on the sofa - the blur of the nightly news, Wheel of Fortune, some lame sit-com, another lame sit-com - it doesn't matter you aren't watching you are watching through it - gazing not taking it in - just hoping this will pass.

Re-boot.  You have the chills now, your ever present hot body is cold, warm shower - maybe that will help mentally re-boot.  You are thankful now that a shower is possible - You are thankful now your back pain is a minor ache - You are thankful that this week three aquaintances have told you out of the blue that you look better than you have, one used the word Hollywood (oh its called the mono-chromatic look - beige jeans, crisp white tee, beige sunglasses - works wonders!) and you think - if you could see me now.

While I was in the shower, it came to me - Live Loud.  That's what I miss - I have never been a loud person - boisterous etc..but I had loud dreams and loud hopes and loud loves and loud gatherings with loud laughs and loud music and loud fun.  I ache for my careful being to not have to be careful - to push my limits again, even at best that meant traveling somewhere alone - or hiking when I don't like to hike - but it was MY decision - and I could fight through anxiety - but this - this you can't fight it - I began thinking of the Photographer Tyler Shields - and yearning for the wild abandon of those that are blessed with the ability to push themselves and get results.  The need for danger was never in my DNA but this illness has forced the everyday to often become a mine field to walk carefully through.

So I got out of the shower and did the only thing that spoke to me to grab some control - instead of the gray sweatshirt I had - I grabbed the bright robe my aunt gave me as a "joy" gift and put some bright lipstick on - its about as LOUD as I can get.  I tried to slowly eat, but the level of fatigue made it so I had to spit out my cereal twice because my natural autonomic process of swallowing didn't want to work - I sipped juice ever so slowly - I tried a ham sandwich - couldn't do that.  I was staring at food that my body wanted to devour and yet reject simultaneously.  And at that moment, as I took in this day, the simple mishap that made my body follow no rules - thinking about those 126 beats my heart needed to do such a simple task as stand at the end of my driveway and talk to a neighbor - I thought hard about the past 6 plus years and all that I have given up - and the magnitude of this illness - the magnitude that I have tried to deny began to crush my hope.

I will begin again tomorrow - and I will try every day to do my best to Live Loud the way I had dreamed, the dream may just need a bit of tweaking.  As these past few days as the nation and world have listened to the stories of the loved ones lost or nearly lost in the masacere in Aurora, Colorado you are reminded of what really makes someone's life - its the magical memories we tuck inside our hearts - its the memory that someone may not even know you are taking - but the moment that made them feel loved, the moment that made them feel joy, the moment that brought happiness and you realize, adjusting my dreams to the simple things may be the best gift I could ever have been given.

So today, I will never forget the nervous anticipation as my niece finally hit the much talked about 4th birthday.  And the hug she gave me and nervous blush as she was so excited to play doctor with her new lab coat and instruments that she needed some privacy - the purity of her being fills you up.  Her gorgeous innocence and compassionate beauty as she told my parents she always wanted a toy pony.  Her health - I am so grateful for her health - And I have the photos to remind me that in that moment I was blessed to feel really quite good - and the crash - well it happened after and that's all that matters to me - it happened after.

Make no mistake - I hate this illness but I am getting better at not hating myself for the position it has put me in - I hate the uncertainty - the broken dreams - the confusion of what next - I hate that I can't do normal things to make my body strong - And days like today when the Joy is so high and the Sorrow so deep you feel that you can't tolerate it for one more minute - you stop and you breathe and you hold the memory of the Joy and let it win.

The Birthday Girl

Perfection

Joy Wins

beating faster

so a quick update - confirmation that mornings are tough - anything besides sitting or lying down gives me a heart rate of 100 - 115.  Brushing teeth - walking to kitchen - making coffee- yeah probably should re-think the coffee...in case anyone is wondering...no i don't smoke - never have.

beating heart

After talking about it, thinking about, procrastinating it, it finally happened - I got a heart rate monitor.  Okay, so my boyfriend did all the leg work - aka Amazon.com work and ordered it - read how to use it - details, details, let's not get lost in the details - And despite knowing how I feel - and as I have said before getting the "maybe you'd feel better if you did a bit of exercise" speech in many contorted fashions - well folks - guess what - apparently I am exercising 24/7.  Yep, that's right - being 40 years old and using the equation of 220 - 40 = 180 - 180 is my maximum heart rate for exercising.  Then you take 60% of that maximum to arrive at the anaerobic threshold, the average percentage for most that you begin to exert oxygen deprivation (normally in a good way) for exercise purposes - aka your working.  So, that number is 180 x .6 = 108.  Are you still with me??? So, this is just a rough estimate, using these calculations, the suggestion is for us CFS'ers - aka NK cell dysfunction disorder aka ME aka Neuro-Endocrine Immune Disorder - aka - I look fine but feel like crap most of the 24 hours out of the day - is to stay below the 60% thresholed.

So, let the fun begin - let "the wild rumpis start" its experiment time.  So, its about 1pm I am back in bed, (but I had a great day yesterday - will post about that later) - so we put the chest strap on, watch in place and as I got up from lying down (heart rate moving between 65 - 79) we did the clean the kitchen experiment.  A task that has brought much debate in my household, and has brought confusion when I explain I can empty the top part of the dishwasher - but don't feel well when I do the bottom rack - or I can make dinner OR clean up - but not both back to back....walking to the kitchen (HR 80-90), emptying top rack (85-95), emptying bottom rack (fluctuating between 85 -99), washing pots and pans (never below 100 - maximum 112).  Okay kitchen done - and I have had a constant 27 point fluctuation in my heart rate.)  Alright - need a rest - back on chair, feet up heart rate goes between 72 - 85.  Alright - let's try laundry...unloading dryer, folding and placing in laundry basket - range 85 -102...okay we are seeing a pattern here - daily tasks - not only cause and increase in my heart rate, but also have many fluctuations ranging 20 beats for the same task.  Okay, rest again - get up to get some juice and water - lift arm to get glass, open refrigerator door - we are climbing we are climbing - Houston we have reached 100 again.

Alright I begin to think - perhaps despite being 40 years old, with extremely LOW blood pressure, LOW cholesterol, not overweight - perhaps because I don't exercise I am hitting these numbers.  So I decide to take my dog for a short walk - to the top of the mild incline four houses down....my heart rate reaches 140.  Not only does it hit 140 it bounces like a Mexican Jelly Bean all over the board - 14 0 - rest drop 110 - stand to long in one place back up to 130...you get the picture.  And to clarify "walk" is a strong word for what I was doing...more of a leisurely stroll- with multiple stops for Sophie to sniff...and it was a bit on the warm and muggy side - another thing I learned is not good for Orthsotatic Intolerance...Once again - Houston we have a problem...

But within this problem once again the constant questioning of am I not pushing hard enough - maybe I'm just a bit down - maybe if I did more....maybe if I ignored the symptoms they would just go away - a heart rate monitor is a powerful tool - to see numbers replicating how you are feeling - and the next time someone says maybe I should try more exercise - I can confidently say - that currently - day to day life is doing wonders on my beating heart.

what a difference...

a day makes...waiting it out is always difficult but then the clouds break open and something gives - and you feel like yourself again.  What I do...didn't get out of bed yesterday, embarrassingly watched all five DVR episodes of the new Dallas this morning - did you see it Grandma? JR Lives!  My grandparents were die hard Dallas fans, I never watched it, but when I saw on the 4th they had the new season as a marathon thought it was a good idea for the back pocket for days like yesterday and this morning.  Well enough to watch something stupid, still not feeling up to reading or writing.  But at 6pm after a good dinner I felt like a new person and being a CFS'er didn't' want to take it for granted.  So I picked up the phone, to see if my friends wanted to meet me at the pool and had an hour and half of that old sweetness.  Not too humid, sun setting, dip in the pool - ahh what a difference a day can make.

why blog...when someone blogged it already!

what a weird coincidence - my struggle today was front and center when i opened my computer at 2am this morning when i saw sue jackson's post...today was a bad day - besides eating i never left my bed.  One of those days that the tv hurts your head - a book is too daunting - talking on the phone exhausting - everything is a struggle.  I feel like a UPS box that has been shipped, dropped and misplaced traveling all over the country never finding its destination -  the large words FRAGILE and now DAMAGED stamped all over it.  Any minute, any hour, okay - maybe tomorrow it will pass - the feeling like the flu is just about to come on...I had a good day yesterday, went shopping and getting a pedicure with my cousin's wife whom i don't really ever spend much time with, they have never lived in the same state.  So, it was nice to spend quality time rather than the normal group setting situation we normally spend together.  The day before I the second time was a charm and I was able to spend a few minutes in the pool with Addison and my sister - but everything this week has been a fight to the finish - I participated a lot but now today I am physically and emotionally spent - feeling FrAGILE and DAMAGED -
thanks Sue - I am re-posting - again, like I said to Sue, days like today I don't' understand it myself and I am living it - so I understand the difficulty to make the leap to see a 'healthy" looking person in front of you and realize that while they are talking to you their head may be spinning , feel a bit tired if they are standing up, and sometimes you just don't want to believe - you want to blame "depressed" "anxious" "over reacting" etc etc etc but I ask you to look at the person you know and love and remember their life "before" and then think...is there any reason in the world that this person that loved to go out to eat, socialize like a butterfly, constantly seek out education, volunteer, had a full and happy life...would this person really spend all day in bed? No my friend they wouldn't unless they were too sick to get out.

Sue Jackson Blog..check it out

Helping Family Understand ME/CFS

A friend e-mailed me earlier this week about how she was both looking forward to and dreading a vacation with extended family. She said her family just didn’t understand how disabled she was by CFS.  This got me thinking about my own early difficulties with my family, so I thought I’d share some of those experiences as well as some insights that I’ve gained after 10 years of illness.  I know now that many of those early problems were based in good intentions and misunderstandings.

Like my friend and most people with ME/CFS, I felt as though my family didn’t understand what I was going through in those early years.  In fact, throughout those early years – the first undiagnosed one and the ones that followed it – I mostly felt utterly abandoned by my extended family.  Not only did they not understand how disabled I was, but it also seemed like they were intent on ignoring my illness all together!  I was stunned – and hurt – when we got together with my family, and everyone acted like everything was just fine.  Couldn’t they see how sick I was and how dramatically my life had changed?  Did they not believe me?  And when we weren’t together (none of my family lives nearby), it seemed that they had completely forgotten about me – no phone calls, no letter or cards, not even an e-mail to ask how I was doing.  I was deeply, deeply hurt.

I hit bottom, both emotionally and physically, during a family vacation in the Adirondacks.  My husband, Ken, and I knew it was going to be too much for me, but we let ourselves get talked into it. The trip turned out even worse than we’d anticipated.  The exertion and stress sent me into the worst crash I’d ever experienced (before or since), I had to spend most of my week closed up in my bedroom, and my family seemed (to me) to just ignore my suffering and pretend everything was OK.

That was the final straw for me.  I couldn’t believe that my family could be so cold and uncaring.  We’d always had a close, loving family, and I was stunned that they weren’t there for me when I needed them most.  How could they just abandon me like that?

Later, in hindsight and after much thought, I realized that I misinterpreted their actions.  It wasn’t that they had stopped loving me; in fact, it was just the opposite.  The all loved me so much that they just could not accept that I could possibly be that sick.  They were all in deep denial about my illness, trying to convince themselves that my illness was not serious and that nothing had changed.  In addition, they misinterpreted the way I acted when severely ill as depression and believed that what was best for me was to help me “get my mind off” my illness by not focusing on it. Once I understood this, I could begin to forgive them, though it was a slow, gradual process.

Today, things are much better between me and my family.  Most of them now do understand that I have CFS, that it is a serious illness, and that it is not going away.  Though some of them still feel a bit uncomfortable with the fact that I am chronically ill, they do their best to be kind and supportive to me.  For my part, I try to be honest about my illness and its effects without focusing too much on it. They now understand I need to nap every day, they can tell when I’m not feeling well, and they will even ask how I am doing occasionally.

So, how did we get to this new and improved state?  Well, again, it was a very slow, gradual process.  I think what helped the most was finally turning my mother around because she has a lot of influence with the rest of the family.  Because I didn’t seem to be getting through to her by talking, I wrote her a six-page letter.  In it, I explained what my life with CFS is like, how I perceived the way my family treated me, and how their actions really affected me.  I tried to emphasize that I understood they thought they were acting in my best interests.  I said that I thought they believed these things:

·      “the best thing for me is to keep my mind off my illness

·      I am consumed with thoughts of illness and focus too much on it

·      talking to me about my illness, how I’m feeling, etc. will only make me focus on it more

·      I am depressed a lot because of my illness”

And then, I explained:

“From my perspective, when I’m with you & the rest of the family, I feel as though you won’t acknowledge what I’m going through.  I feel as though everyone is pretending that everything is just fine. What you describe as “walking on eggshells,” I experience as a form of denial, that no one will just look me in the eye and acknowledge that I feel very sick.  The worse I feel, the more I feel ignored and invisible.

I want to emphasize that I’m not looking for pity or coddling.  I don’t expect my illness to ruin everyone else’s good time or force everyone to express sadness.  All I want – and need – is simple honesty and acknowledgement.”

I also explained why it was so difficult for me to spend time with other people:  “Stress and exertion come in all sorts of forms: physical, emotional, mental, social.  Even “good stress,” like excitement and joy, release certain stress hormones that my body can’t handle the way a healthy person can.  Any kind of social interaction is exhausting for me.  When I’ve tried to explain to you how much it wears me out to spend time with the family, you tend to take it personally.  But it’s not personal at all.  I respond the same way to social interaction with friends.”

I realized that my mother thought I was depressed and that she had to cheer me up.  I think this may be true for many of our family members.  They see us feeling so sick, and they misinterpret our distress for depression or even anger or a bad attitude.  

Finally, I enclosed a copy of a chapter from a book on CFS that I thought did a good job of explaining what life with CFS is really like.

To my mother’s credit, that letter sparked a major change, which then carried over to the rest of the family (I knew it was she telling the rest of the family not to focus on my illness and to “help me” get my mind off it).  My mother actually sought out a therapist who specialized in helping families of chronically ill people.  I think she finally read some of the information I’d been sending over the years about CFS.  And she changed her attitude and the way she treated me dramatically.  Eventually, that led to changes in the way the rest of the family treated me also.

I think it’s important to be honest with our families about how ME/CFS affects us, especially how we respond to social interaction.  I have also tried to share information with family (and friends) about what CFS is and what its symptoms are.  As in my case, helping our families to understand what we truly need can be a lengthy and painful process, but I do believe it is worthwhile in the end.  I feel as if I lost my family for a while there, but I have them back now.

What have your experiences been with your family?