Fears, Phobias, Booga Bears and More...

Hello - My name is Linnie and I have a phobia of talking on the phone.  Yep - there it is and I am not talking a little discomfort.....it's bad and has cost me much in my life and I am writing this article today because it now threatens another new friendship.

I realize that most of us have issues relating to our illness that are hard if not impossible to explain.  For me the written word, notes, letters, emails......anything similar have always come easier to me than conversation.  But, for the most part, I will talk your head off in person.  The phone - not so much.  It hasn't always been this bad and has increased with age.  I really don't think of it as an out right fear but with closer inspection, I am forced to admit that is the root of this problem.

For years I worked in an office and was chained to a phone and even worked an eight line switchboard - loved it all.  I talked for hours to friends and family with abandon.  But.....there was a hesitation at times when the phone rang - I didn't want to answer - I wanted to run.  Back in the day you answered it without question because we didn't know who was calling and it could be an emergency - right??? One of the worst disagreements with my husband's family stemmed from this issue and my mother-in-law thinkng it was about her - my own mother just didn't get it.  Fast forward to the age of caller ID and things heated up.  Was I afraid of particular callers or just talking....WTH???

As I travel back through my memory and dig deeper, I find that this issue increased and became a problem at about the time I got sick.  The more confusion, fatigue, etc. that I suffered, the more it was exacerbated ten fold.  When I worked as in independent contractor and had my own business (only because I couldn't work full time in an office) it truly became a problem.  It is all but impossible to avoid the phone when you work with others and need to communicate.  A dream come true for me was the revolution of email.  I would relish the glow of my old Wang computer when I turned it on each morning and easily communicated information and enjoyed relationships with those I worked with.  It was a miracle.

But......friends just don't get it!!  I can force myself to have brief conversations with my children - they are my heart and unless I am wiped out I will always talk to them and Hubby as well.  I do give him grief from time to time when he tries to prolong the conversation - it's just too hard and will usually end in a disagreement.  I will normally put off telling anyone the real reason I didn't pick up the phone until I absolutely have to.  I have a dear friend that I have known for years and she gets it and has even sent me links to articles online about the problem.  But most of the time friends and family walk away - they say it's weird, not real, a cop out.  Even just typing this my heart races and I feel defeated.  No I can't really explain it and no I don't want to push myself over the hurdle....I have tried all of that and just because I may do it today, I won't be able to tomorrow.  For a time when I was on meds like Ritalin, I could push through and that tells me it is all about my brain.  I can't take stimulants any longer due to my A-fib issues.  So that's not an option.

So here I am belaboring this issue one again, digging, working to understand.  I have had to give up much for this chronic illness and this is just one more thing but I release it willingly because the energy it takes to try to pretend it is not a problem is just not worth it.  I accept it and find work arounds.  Hell - I will even make doctor's appointments online, order pizza from a web site, make a reservation with a link.  It's crazy - and I know this!!! I have improved over time - I will make short quick phone calls to make an appointment if absolutely necessary.  If it is quick and to the point I can do it if I am in the right frame of mind.  But having said that, I cannot force myself when my brain says no - I have tried and I just can't do it.  No amount of cajoling, shaming, forcing will work.  These tactics just reinforce the problem and make it worse in the long run.

In defining the problem it appears that there are my factors - lack of facial cues, past bad experiences with friends and family, fatigue to the point of issues with word finding, and more.  I do believe that overwhelming depression factors in for many of us and definitely is a clue here.  When I am especially depressed I hide and the last, very last thing I want to do is have a phone conversation - it is just too hard.

Here are some links to articles that somewhat explain this phobia - but it is different for each us of and we must find out own answers and make our own solutions.  For me I have decided to work around with texts and emails and short calls when necessary.  I have a very fancy new cell phone - why you ask???  Because it allows me to text and email and keep up with friends and family without actually have to talk.  Great lengths I go to but these efforts help me make it work.

http://www.changethatsrightnow.com/phone-phobia/medication-and-drugs/
http://en.wikipedia.org/wiki/Telephone_phobia
http://ezinearticles.com/?Phone-Phobia---Fear-of-Talking-on-the-Phone&id=5892619
http://socialanxietydisorder.about.com/od/copingwithsad/a/phonephobia.htm
These are just a few - there is a ton of information out there about social anxieties and the most important thing I want to express is that this is real!!!

Set Yourself Up......

One of the biggest struggles for me and many of us, is being able to accomplish things we want to do.  That is the one definitive division that lets me know that I am not well.  If I were just lazy or whatever, I would still do things that I enjoy but just not the stuff I don't.  That is the one accusation I will bristle at every time....."but you can do anything you want to do"!  Oh so not true!!!

For me it is a daily struggle.  Days, weeks, even months go by and I don't actually do anything that I could enjoy or love to do.  Then I look back and see my life disappearing in the rear view mirror and I realize that the dreams that I have are just that and will never be realized if I don't find a way to fit just a few into my daily life.  I am not talking big things by any means.....just things that many take for granted and do with ease.  Taking pictures, scrapbooking and documenting the lives of my children, enjoying their big days, crafting or sewing, knitting, crocheting, cooking.  Just normal stuff that I used to so love doing and feel lost without.  I spend a lot of time reading about doing these things and cruising Pinterest and other sites dreaming and planning the one day when I will.....someday.

What I do, when I am able is try to set myself up for success with small things....even just doing some cleaning that I haven't been able to get my arms around.  If it makes me feel good and gives me purpose then it's on the list.  Here are a few of the things that I have learned and work for me.

• I make lots of lists - they make me feel that I have already accomplished something. 
• I use a planner - I struggle with this as I will make great notes, etc. and then forget to look at it for days so this is still a work in progress.  It does help when I actually use it.
• I use a calendar on my laptop to post ideas and things I want to get done or be able to do
• I send myself texts and emails - yep I do.  Just short quick ones like "work in the sewing room".  this truly helps.
• I save anything that gives me motivation in a file on my desktop and or on Pinterest.  Fortunately for us all there are tons of places to find these now and art with a message can truly be a strong motivator
• I keep a small notebook nearby to make notes on ideas, etc.
• I peruse organizational sites for ideas on how to get stuff done - it works.
• I try to force myself to change my routine - I used to sit in a comfortable chair for hours on end and then when I would try to move....I couldn't.  Now I try to sit in a hard chair at our bar in the mornings so that I will easily move.  It works.
• I push myself...hard.  Now I still practice pacing but I just get up and do it when I can....sometimes I can't but when I can it is awesome!!!
• Take small bites - for most of us we can't take on big time chunks or larger projects.  Don't let that stop you - do small things when you can and eventually you will finish up something.
• Above all be patient with yourself.  Frustration is part of the process but try to enjoy accomplishments and reward yourself when you can.  Only you know how hard it is to make these goals and dreams happen - pat yourself on the back.

 These are just some suggestions and I know everybody has their own list.  Learn what works for you and of course it is ever changing because our illness changes.  For me, cognitive issues rule my day and so does fatigue.  For others there are different front runners and the list changes with those needs.  The main thing I have learned is sometimes it is okay to Just Do It!!!

Triggers.....What are Yours????

This post is not a pretty one and if you have a weak stomach, you may want to turn away now.  Disclosure - it's about the bathroom.  Um you know Potty Talk.  For me and a lot of others with chronic illnesses, potty troubles rule the day.  For me it is a daily struggle and something I have to always think about.  Will I be close enough to a bathroom, will I make it, how far can I ride in the car without an incident.

A little background information - I have had what they used to call a spastic colon forever!  I believe I remember hearing that diagnosis at about 17.  Later they labeled it IBS - Irritable Bowel Syndrome.  No surprise there - all of my parts seem to be irritable or spastic. Gall bladder, uterus, bladder, colon....just seems to be the normal for me.  Many people with ME/CFS as well as Fibro have bowel/stomach disorders along with their illnesses. 

 Now to what is going on now.  A few years ago I started having trouble during bowel movements (I know Potty Talk) and it increasingly got worse.  I would feel a little stomach pain and then my ears would get hot, mouth dry, ears would start ringing and as I sat helpless on the toilet I would begin to pass out.  The goal became to complete the bowl movement before passing out so that I could crawl to my bed and lie flat until the episode passed.  It takes an hour or more laying flat or with feet up for it to completely go away.  Sometimes I am successful and sometimes not.  I won't go into the mishaps that I have had and how frustrating this has become.  The name the doctors have given it is: 

Vasovagal syncope (vay-zoh-VAY-gul SING-kuh-pee)

(also called neurocardiogenic syncope) 

Now passing out is no fun in any case but my real problem is the accompanying poop issue.  If I don't get to a bathroom before I go down, I have no control of what happens.  This happened once while we were on our way home in the car and the train left the station and could not be stopped.  I tried so hard not to pass out but was all but gone and I could feel my legs start vibrating as if I was having a seizure.  Hubby had to practically drag me into the house where I had to sit on the toilet with head between the knees - my new strategy - assuming the position.  I can go weeks without an episode and then bam here we go again.  These also come with nausea, belching, tummy rumbling and pain in the middle of the stomach.  I ended up on the floor of the dentist's office yesterday - so embarrassing.  But at least no poop accident....

I am going into all of this poopy talk because I must figure out my trigger.  Just like so many things with these illnesses, there is a trigger.  Things I do know - constipation, over eating and drinking things with sugar seem to bring on an attack.  I have had lots of tests done and the only conclusion is that there is something that triggers this for me.  I am starting to think food allergies, possibly gluten sensitivity.  I have read lots about how common it is for those with Fibro to also have gluten issues.  So my conclusion until more tests are done is that I am going to put myself on a gluten free diet to see what happens.  I figure it can't hurt and all I have to loose are some of my favorite foods.  :-)  For now I just would like to be able to leave home without feeling that I need a diaper and that I must always have a caretaker. 

I would love to hear from others who may have any of these type symptoms with their ME and or Fibro or any chronic illness for that matter.  Together I believe we can figure out things that sometimes our doctor's can't.  Together we are all stronger.

What is Your Season????

For many of us with a chronic illness, seasons can make a huge difference in how we are feeling.  Some just love Spring with the color and more moderate temps and others love cold for some inexplicable reason.  For me, Fall is the season that I get the most relief from pain and allergies.  Well for most of us, Spring has sprung and love it or not it is here.

For many years I had a love hate relationship with
Spring.  While I enjoyed the color and life that showed up with flowers and weather, I felt Spring was mocking me.  Yep - there it is - how could the world be alive with color and beauty when I felt old and awful.  To top it all off, like so many I am plagued with allergies that exacerbate something awful in Spring.  They are with me all year long but Spring is the trifecta for me - runny nose, stuffy head and drippy eyes.  Ugh.  I have read many times that allergies are supposed to lesson as we grow older - something about the immune system becoming less effective so it doesn't fight the things our bodies used to rebel with as much vigor.  Sure - not for me - mine just keep getting worse.  Anyway - enough of the whining - there is a point in all of this.  Really.....

As I get older I am learning to embrace the good things that we can enjoy from each time of the year and put the bad ones on the back burner.  Now that sounds so easy but just like anything in life it has taken lots of time and practice over the years.  Don't misunderstand, next week I will very likely be complaining as I hack and sneeze but at least for today I am embracing the first day of Spring and so trying to enjoy all of the things on the love side of the list.

Now this is true with all of the things that bring on bad days and weeks in bed. I still believe in fighting for my health and I do it everyday but I have also learned that we must mine for the gold in each and every situation to make life all that it can be.  If we allow the pain and negativity to overcome us it will envelope us and we become powerless.  This past winter was difficult for me and while our weather here was mild compared to many areas in the country, it was tough for us Southerners who are not prepared for it.  I succumbed to a deeper depression than usual and confined myself to my bedroom for hibernation.  With a change in meds and an ability to see myself sinking in deeper and deeper, I have been able to grab hold of the side of the hole and begin to claw my way out.  I am not on solid ground just yet but I am feeling my feet beneath me again and as I look up to a rare bright sunny day I feel some of the pain easing away slowly - just as it came on.

For those of you who don't suffer depression as an aside to the effects of chronic illness, then none of this may make sense.  But......for those of us who live it and breathe it every day of our lives, you know these feelings well.  Get out and take a walk, make yourself connect with others, love those who love you and enjoy them.  Hug your pets and hold them close to feel another heart beat, feed yourself well and know that you are worth feeling better!  Above all learn to be kind to yourself because through that exercise you will know kindness and love for others and life will bloom again right along with Spring!

What...CAN...We Do?????

I have been hibernating for the past few months and I am gradually trying to drag myself out of my cave.  This happens several times a year, especially when it is very cold.  We have had an unusually cold crazy winter here in SC and by no means am I complaining because I know other parts of the country have it much worse.

When I lock myself away, I have a tendency to think and rethink things and sometimes that's not good for anybody.  But....that doesn't stop me.  (Smile)  Anyway, I have been thinking a lot about something that I truly don't like and I am sure many with chronic illnesses may agree.  I know we all have our own list of pet peeves and much of them are more than likely the same.  For me I just hate it when a friend or family member tells me "You can do what you want to do".......  Really??????  What the hell - IF I could do what I want to, I would dance, and shop and run and on and on and on.  What many fail to see is that if we could do as we please, we surely wouldn't choose to be at home missing out on so much of life.  We try and make the best of our new reality and it appears that this is our choice.  I think I speak for most when I say it is not!

As this poster reminds me, thoughts can take me down if I don't get them somewhat under control.  One way for me is writing so here I am, pouring out my dribble and hoping it will help others who understand it all too well.  An idea struck me as I was dwelling on this pet peeve and I thought it might be helpful to us all!  I decided to create an FAQ - one that would be useful to many of us as a whole.  When someone gets on your last nerve or just because, you can share this little ditty and hope it sinks in.  Let me know if you have suggestions for additions.  It is a living breathing statement and I know that I will think of more very quickly as soon as they rotate around again in my brain.

Frequently Asked Questions About ME/Chronic Fatigue/Fibromyalgia and Chronic Pain

• Q:  Are you really that tired?  I get tired too and I just keep going.  Why can't you?  A:  There should be another word in our vocabulary that explains or exemplifies how tired we get.  There is no true description but the best way I can explain it is to say it is like you feel after surgery or a very bad bout of the flu.....exhausted, drained, too tired to even breathe on your own.  The harder we push ourselves, the deeper hole we dig and the longer it takes to feel any relief.
•  Q:  If you just go to bed earlier and get a little more sleep, you will be fine.  A:  This is a truly frustrating idea for us to hear.  No matter how much rest we get, or how much sleep, it really does not help.  It can keep us functioning but it will not make the fatigue go away and it will not allow us to sleep less.  It just doesn't work that way.
• Q:  Take a shower - always makes me feel better.  Why don't you try that?  A:  If only I had a dime for every time I have heard that suggestion.  Unfortunately hot showers and or baths can be relaxing and help with pain but usually increase fatigue and take a good while to recover from.
• Q:   You look fine and don't look disabled.  I think you are fine.  A:  I read a little sign once that answered this perfectly ~ it said "you don't look stupid either".  As many have said these are, for the most part, invisible illnesses.  Some of us do have rashes and in time look haggard from lack of sleep but there is not much in the way of our appearance that gives it away.  With time my ability to walk has changed and many of us suffer from balance issues as well.
• Q:  Oh I think you just have _______________.  My sister, friend, brother, have it and they are fine.  A:  Please understand that most of us have been through so very many tests and doctors and meds, and every other possible cause of these problems has been sought out and YES I have seen a psychiatrist too it's not all in my head.  Really we don't need your diagnosis as well.
•  Q:  I heard there is a medication you can take to make it go away.  A:  Fibro and ME/Chronic Fatigue are very complex illnesses and there is no one prescription that will cure or take away all of the symptoms.  There are medications that can alleviate some of the symptoms but nothing can make it all go away. 
• Q:  I am sure you could find a job sitting down.  A:  Unfortunately sitting does not allieviate the pain and many cases it makes things much worse.  Staying in one position and one of the worst things you can do and will definitely cause all sorts of issues.
• Q:  I am sure you could work from home.  A:  Many of us have worked from home, remotely and any other way possible.  I did it for over 14 years after I was diagnosed until I could not do it any longer.  The complexities of these illness make it so difficult to work in so many ways.

Well, as most of you know, this is just a sample and the tip of the iceberg.  I have mentioned some of the most personal for me but I would love to know what others are hearing in their own lives.  Information is power and if we all work together to try and make ourselves understood, maybe one day it will make a difference for those who also walk this path.  Email me at lslee@sc.rr.com with any ideas to add to the list.

Another resource I wanted to mention in this l-o-n-g post is the BYDLS web page and the spoon theory.  My daughter-in-law told me about this site and the theory is a very simple way to explain how we live out our days.   That link is below - share it with your loved ones if you haven't already.  It is truly awesome!

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Shock and Disbelief.....

WTH???

I try very hard to aim for positivity with this blog and for the most part I maintain that here.  There is quite enough ugly in this world and in the lives of those of us with chronic illnesses.  But......today I must make an exception.  As most of you know there was a 60 Minutes report concerning disability filings that has slammed most of us with one fell slap in the face.  I am not going to post the video here because it is so biased and one sided but you can click on the link above and find it if you would like.

Now I am not naive enough to believe that there is no fraud in the disability process and I realize that our government is over taxed and the best decisions are not always made.  However, to come down on one group or illness and claim that there is an overwhelming  majority of fraud in that one category is painful and ignorant.  It takes us back years in the fight we have made to be recognized and accepted and most importantly understood.

Most of us suffer with other related conditions that add to our disability and I remember that the judge in my case noted that in his decision - that all of the relating disorders came together to create my disability.  Many of us worked for years after we became ill and tried very hard not to file for disability.  In my case I worked for 34 years and 18 of that came after I fell ill.  I worked from home for 14 just so that I could keep working.  I waited for over two years for the final decision on my disability and my family suffered a good bit due to that wait.  My story is not unique and is similar in many cases.

All we ask, those of us who are chronically ill, is for understanding and respect!  We have been called crazy and much worse, but we persevere - why you ask...because we are not well and it is the truth!!  It is REAL, it is frustrating and not something anyone would ask for just so they didn't have to work!!!  Most of us spent many years working very hard and were proud of that fact so don't belittle or lump us all together as one lazy bunch of so and so's who would lie just to get a measly amount of money that you can't even survive on.

Smell What?......

I know are have all heard of aroma therapy and the idea that smells can make us feel better, help us sleep, etc.  I believe in some of that but mostly I just use good smells to get rid of the bad ones.  Well, Hubby and I picked up one of those decanters with the sticks and the oil and it was pumpkin scented.  I just love fall and normally I will have fall scented candles around and stuff like that.

I don't know if I am just getting older or what but since I opened that smelly thing and the warm pumpkin scent has permeated the rooms in our house, I have felt a burst of Fall Feelings!  I am now a firm believer in this scent thing.  I have actually visualized that it will be cooler when I step outside (that's not happening - I live in SC) and I imagine pies baking, and I feel a little more festive.  It has brought about memories and feelings of Falls past and transported me from the mundane and everyday into a world of holidays, turkey, falling leaves and so much more.

Why do I mention this you say - I am thinking that those of us who suffer from chronic illness and pain could benefit from more of this type of therapy.  I know we have to proceed with caution because many of us are also very sensitive to smells, etc. and I am included in the group.  But.....there are many natural scents that we can use such as vanilla that will do the trick like my pumpkin.  Warm vanilla sugar is another favorite of mine.

Now.....the only drawback is that many of these make me hungry!!!  Ugh!!!  Oh well - good with the bad - right?

Always Learning......

I have been so lax lately about my blogs - just haven't been able to get the words down.  I have lots of things going on in my head - if only there was a direct link to my brain that would print it out for me.  Ha - that may not be such a good idea much of the time.  :-)

I read a very interesting article a few weeks ago and it really hit home with me.  Along with the Fibro and CFS/ME, I have ADD and other learning disabilities that were never addressed as a child.  Back then we just didn't know much about this sort of stuff - I just thought I was stupid and while that may sometimes be partly true.....I don't believe it is the whole story.  This article has really given me the ability to ease up on the crushed self esteem that had been caused by the combination of all of these things.  Maybe.....just maybe it's not necessarily all  my fault.  Time has always been allusive to me and math - lets don't even talk about that - I just simply am awful at it!  This article talks about how many of us have these types of problems and they are common among us.  I don't believe anyone is really sure about why.  Check it out and it may speak to you as well.  I always feel better learning more and the more I know, the better I feel.

http://chronicfatigue.about.com/b/2009/11/24/problems-with-time-math-in-fibromyalgia-chronic-fatigue-syndrome.htm 

Chain of Causation.......

Since I tend to watch a good bit of television, I love comedies - laughter helps no matter how I am feeling and I get hooked on programs that are about families.  One that I recently found is "Are We There Yet?".  It's about a family with tween kids and a mom and dad who are busy working and trying to make this family work.  Always funny, right?  Well, Hubby and I were talking this morning about a line they use on the show quite frequently ~ Chain of Causation.  It's the kids way to explain their way out of things and the adults usually follow along.  I love it and if you are a parent or were a kid, you totally get this.  Just in case you don't, below is the definition.

Definition of CHAIN OF CAUSATION

• A series of events, each of which was caused by the immediately previous event.

• A series of events or situations interrelated and leading to a particular effect

For those of us with a chronic illness, our chain of causation is quite important because it allows us to trace back our steps and possibly figure out what caused a particular flare or symptom.  It's like a puzzle for me and over the years I have gotten pretty good at it.  I over ate on Tuesday night and had some fatty fried foods, and therefore I suffer on Wednesday and Thursday with tummy problems and more inflammation and......therefore more pain as well.  It is the same general idea as the balance discussion, but gives you a little better look at how far down the road the actual deed or action can cause difficulties.  Keeping a journal can really help with this and help us all to make better decisions or actually realizations that we may not otherwise come to easily.

Sometimes I feel like those V8 commercials and want to bop myself in the head - why didn't I know this already or notice that one small action can cause so many negative reactions.  Simple - right?  Not always because there is such a vast array of symptoms and causes.  Sometimes my Hubby is the one who puts the pieces together because he may notice something that I miss.

Good Luck with your chain and hopefully we can all have better days by a little change in our thought process.....thanks to the kiddos on Are We There Yet?.

On the Dark Side.......

 Ugh.....I hate when I get like this and I can't seem to help myself.  I am in a funk and it happens every now and then - not exactly sure why, all I do know is that the deeper I go the harder it is to find an escape.  I don't know if you can label these episodes as depressive or just anxiety or just part of this whole syndrome of illness.  But...one thing is for sure.....it's not pretty and my family knows better than to poke the bear.

The process is always pretty much the same.  I will be going along making small improvements, feeling that I am doing better, feeling like I have a harness on this crap and that even though I have to live my life differently, I can manage.  Then, out of no where it comes in and slaps me down to the floor and says Oh no you don't!!!  Don't even think about it.....!!!  Okay - I give, I say Uncle and I creep back to my corner and start sleeping way too much cause I can't help myself.  I eat sweets and eat too much and don't do much of anything which makes everything worse and round and round we go.

Maybe it is because we have had lots and lots of rain and cloudy days, maybe it's winter and possibly it is being alone way too much while everyone around me goes about their daily lives.  Possibly my meds need to be tweaked.....I sure don't know and unfortunately there is no easy answer and no where to readily seek advice about this hole I am in. 

Another possible trigger for me is when I get overwhelmed with all of the doctor's visits I need to catch up on and keeping up with refills on my prescriptions.  For someone who has issues remembering and understanding things, this can be a daunting task.  As is the norm for me, I put off appointments because I don't want to go through the process of coordinating transportation or asking my hubby to take time off from work to get these accomplished.  My Internist requires an office visit for every refill and this can get complicated especially when it is an important med like blood pressure, etc.  So I walk on the edge and let them get almost all out or completely out so that an appointment needs to be made right away.  UGH - I hate that.

Then it becomes like a game of dominoes - seriously.  OK - we are out of the BP and the thyroid is due too, oh and did you forget that you have been out of cholesterol for months....oops.  You already know you are not sleeping at night and then you can't get out of bed and the itching is getting worse and worse and Hubby is getting frustrated with you.  STOP......my brain is going to explode!

To top off these frustrations, I came across the article below which makes me want to light my hair on fire - OK maybe I am exaggerating but this is just what I have been experiencing.  Most Neuro doctors will diagnose you with a Somatization disorder because - guess what - you have pain in areas they deem to be all in your head.  Guess what - it is in our heads but not in the way this believe!!!
http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406

All right - I am done with this rant - I will go commiserate with my dog who appears to be in some what of a funk himself.  He gets it.  This too shall pass - I hope.

Are You Itching To Find Out.......

Am I the only one....surely not!  I am driving myself crazy.......ITCHING!!!!!  I keep thinking is it dry skin or just winter stuff, allergies, whatever, but the itching just does not make sense.  I buy special lotions and shampoos and I sleep with a back scratcher hanging right beside my bed because I wake up at all times of the night....you guessed it.....ITCHING!!!!  It is driving me nuts not to mention leaving scars and causing hair loss from my constant scratching.  I scratch to the point of drawing blood and I am constantly blotting up a spot of blood or treating scabs that are trying to heal.  My back looks like I had a bad run in with a tiger or a very angry cat!  I am truly not exaggerating here - my eyes itch, the inside of my nose, inside my ears, and my head wakes me up all night!  What the heck (not the word I had in my head but trying to keep this PG)!#$!%@))!@@#....

For the longest time I have thought it was just me and when I asked my doctor about it he just seemed frustrated again and gave me a prescription for a topical cream which of course did no good at all - none!!!  Well today I finally decided to look up itching and Fibromyalgia and light bulb.....it is part of the syndrome and like everything else it is sensory----not really topical at all.  Whew - that makes perfect sense to me and I don't feel quite as crazy......well I do but a little less.

The big problem now is that I haven't really found a good solution since my itching covers so much of my body.  If you have itching in one spot then cold packs can work wonders because they tend to numb the area.  As always I find Adrienne Dellwo has the best answers to some of our issues.  Itching is no exception and here is a wonderful article she wrote with some great solutions....http://chronicfatigue.about.com/b/2011/08/20/extreme-itch-in-fibromyalgia-chronic-fatigue-syndrome.htm.  She is the go to for no nonsense information and I can't believe I didn't look for this before.

I would love to hear if you have this problem or have any suggestions or solutions.  I am just ITCHING to find out more.....ok sorry but I couldn't resist.  We have to laugh right.....crying makes me ....ITCH?!!!

Can You See Me Now?......

Invisibility is part of our vocabulary and becomes an inescapable part of our lives once we have been diagnosed with certain types of chronic illnesses.  Have you ever sat in your doctor's office and felt you had melted into the furniture and weren't visible to anyone there.   I sure have and I don't much like it.  This is not another depressing whining blog entry I promise - so don't click away just yet.

I was reading a blog that I follow - Lil Blue Boo and I realized how guilty we all are of this.  What do we see all the time and don't really notice.  Ashley's blog entry was about an older man waiting at the same area in the hospital when she was awaiting a scan.  She realized he needed help and made an attempt to assist him but in the end was very sad at the realization that no one really noticed he was alone and needed help.

I truly am trying very hard to be alert and notice things like this but I am continually shocked at what I miss right in front of my eyes.  If we know first hand how hurtful and painful it is to be ignored and misunderstood then it only makes sense that we be the difference we want to see by trying to search out those in similar situations and actually do something - it doesn't have to be a big something.  Small ripples can make huge waves if we try and every positive thing we do for others makes the world a better place to live.  Like the three monkeys, I am going to try hard and put one hand over my complaining mouth and open my ears and eyes to others and maybe at the same time get my mind off of what is hurting and difficult in my own life.  It's worth a try. 

Can We Get A Respectable Disease Over Here.....Please....

Do you ever wish you had something else.....almost anything else other than an invisible illness that is suspect and misunderstood???  Well I sure do - every day.  I know that is counter productive and silly but it is the way that many of us feel!  I remember way back when I was first diagnosed with ME/CFS - I was relieved and I told a friend in a support group how thankful I was that it wasn't something else.  Then when Fibo was added and then Osteoarthritis and Paget's Disease and so on and so on, I realized that with these chronic illnesses we have the same quality of life as someone with MS or Parkinson's Disease.  But.....we are vilified, accused of being hypochondriacs and worse on a daily basis.  We fight for disability in a way that those with more respectable diseases don't have to.  No one wants to talk to us about how we feel or what is going on with us.  These conversations are avoided at all cost.

Please don't misunderstand - I don't want sympathy or anyone feeling sorry for me or my situation.  I don't want to drone on endlessly about my symptoms, I and most of us, just want to be understood.  We want to be treated in the same way a person with one of those understood believed in types of illnesses are.  I know this may sound petty to someone who is not traveling this path with us, but it makes our journey harder each day.

How many times have you been in a situation that someone asks about your health and you don't want to say what the actual problem is because you don't want to see that look on their face??    I believe all of this has come to the surface again for me because I am in the process of completing my SSDI Update Report and it brings back all of the memories and looks of disdain I experienced when first filing for disability income.  I worked 34 years of my life - many years after I was first diagnosed and fought to keep working way too long and therefore I will admit to being a little over sensitive about this topic.

I can't tell you the number of times I have read in reports that ME and Fibro alone can be as debilitating as MS or other neurological diseases.  When will this become a commonly understood fact??  I tell my husband that one day, long after I am gone, I hope there will be understanding for what we live with and people will say.....I can't believe how hard it was for those who came before us and were misunderstood..... 

Thank You Mr. President......

My post today may not be a popular one, but something I feel strongly about all the same.  A few years ago I wrote a post here which was an open letter to our President ~ President Barrack Obama.  It was a plea asking that our government look closely at the health care crisis and take action.  At that time I was caught between loop holes in the system and was unable to attain proper health care for my chronic illnesses.

Many may say that I am Pollyanna in my support and belief in our current President and I admit that may be just a little bit true.  But, I stand firm in my belief that President Barrack Obama is an extraordinary human being and we will look back on this time and realize that we were all witnessing faith, hope and love in action during this time in our lives.

Now you may say that a President has to be tough and cut throat to do his job - I don't believe this to be true.  I believe that a person who has the best interest of all people, all colors, all faiths, all man kind, will make the best decisions for us all.  For those of us who have been in the group known as the disenfranchised, we see through the politics and muck and myer and know that we are so very fortunate to be alive to see the actions of this man and those who support and work with him to do the right thing even when it is not the popular thing to do.

I would go a step further and guess that if Martin Luther King, Jr. were alive today, he would be so very proud of this man who blends the best of two races and is an enigma in our life time.  At the ripe old age of 56, never has there been a time in my life when I felt so very thankful and in awe as I watched the Presidential Inauguration with tears in my eyes and a very full heart. 

Imagine, what would happen if we all, even those who don't support our President or his party, gave up the negativity and tried, really tried to support non-political decisions and actions.  What if all political decision weren't based on money?? What if we worked to all get along and put all negative thoughts aside?  The possibilities are endless and we all will gain if we try and our children will be the beneficiaries of seeing true cooperation and love in action.  What if we reached out a hand to those weaker than ourselves and made the right decisions in our daily lives rather than the one most popular???

On this day of service, we can all think about what we can do to move ahead with positivity and love in action for Love is meaningless without action and action is nothing without Love!  This post is for those friends and family of mine who still fall between the cracks and continue to struggle to get adequate support and health care......Susanne, Julie, Lynda - I love you all and keep you in my prayers each and every day.   There are two many to name them all but know that those of us who can, will continue to beat the drum and fight the good fight.  May God Bless the POTUS and the FLOTUS as well as their family!

Grin and Bear It......Really???

Now that I am older, I look back and realize that I wasted so much of my life being negative and focusing on problems and issues.  I know that sometimes we all be come overwhelmed and must have those moments but they used to be hours on end for me.  Sometimes we can't see past the limitations that we are facing and they surely will get us down but we can't let em keep us down.

Funny thing is that my positive attitude and try to make the best of things mantra have not always served me well.  When I was going through the disability process, I was given a disk containing all of my doctor's visit notes and information.  After my first denial I sat and read through pages of notes that were nothing short of shocking.  Over and over again, different doctors I saw stated that I was pleasant and appeared fine, smiling and not in apparent distress!  Really......my can do attitude and determination to smile through the pain were now being used against me....WTH????? 

I still try to be pleasant and I still believe that a positive attitude will make chronic illness more palatable, but having said that, when you see your doctor you must be brutally honest and don't hide anything....this is one place you must let it all hang out.  I still struggle with having a good relationship with my doctors and not being that pesky whiny person they all hate to see, but as in all things, you must find a balance and err on the side of what is best for your health.  We must be our own best advocated - no one else lives in our bodies and no matter how much you feel that someone else can speak for you - most of the time they don't or won't know the depth of your pain.

So grin and bear it ----- NO!  Smile through the pain maybe, but focus, make a list and be adamant about what your needs are.  Nothing will improve until you are able to take your care into your own hands and make your doctor your partner in improvement.  Hard to do - yes, impossible NO. 

Irritability.....UGH!!!

Am I the only one??  One of my most frustrating symptoms is Irritability!!!  I know that some of this is caused from being in pain - it seems to make my fuse a little shorter.  Sometimes it just sneaks up on me and I blast off with no warning.  My hubby is a little oblivious at times to what triggers these outbreaks and I feel horrible when I snap.  It feels like my nerves have been roughed up with sand paper at times and the least little thing will set me off.  Today the impetus was cracking ice by the hubs .....  even after the offensive noise or irritant stops, I am still feeling raw.  It's as if I have been plugged into the wall and electrified - truly.

Now here's the rub, I have taken Excedrin for the pain which contains caffeine and had one cup of coffee to try and move just a little.  So if I take something to soften the blow of the electrification, then I am a zombie with negative energy - not just tired but totally wiped out.  So there is the daily choice of being on the edge or a lump on the couch.  I realize there are other drugs out there for the pain and I do use some other NSAIDs at times but I cannot take narcotics and I have a very low threshold for drugs in general - another words a very little goes a long way.

So - I try to explain again that startling me, waking me up from a deep sleep for no good reason, or making extremely irritating noises just may cause a backlash that I cannot control.  Nothing horrific but unpleasant just the same.  Let's take note - Mom does not do well with certain irritations so unless there is a compelling reason for them, we won't go there today.  We will all be happier around here and we will all live to see another day.....

Weather and It's Effects.......

Do you have big swings in how you feel when the weather changes?  I sure do and sometimes I just can't get my head around it.  I am fortunate that I live in a relatively warm climate in the south and at some points during the year, I see significant improvement.  But any extreme will cause a halt in my progress and send me reeling backwards.

Right now we are having some cold wet weather and little sunshine and it is very hard to get myself out of bed and even harder to get dressed or move.  Pain is throbbing in all sorts of places and nothing I do seems to quiet the rage my body is sending out.  I truly don't know what I would do if I lived up north or anywhere where there was significant cold weather for long periods of time.  More than likely I would be in bed or huddled on the couch for those months.

As it stands now, I have pretty clear ups and downs associated with the weather and the time of the year.  My norm is to be fairly down and out November through March or so depending on how early Spring comes.  I am just so very thankful that there is a reprieve and things do improve when it is warm but not too hot.

Heat brings about it's own issues and July and August can bring on other issues such as extreme fatigue, sweating and shortness of breath but not as much pain.  So my best months are somewhere in April and possibly May and Fall months of October and maybe November.  I would have to say that Winter is the worst unless it is very mild.

I have also begun to realize that diet plays into this range of temperatures.  If I eat lots of foods that cause inflammation such as those we normally have at Thanksgiving, then I will exacerbate the effects of the cold or heat - whichever is the case.  So I am trying to learn the signals and fight the fight before I am totally down and out.

Please know that none of this is mentioned in an effort to complain, just to think out loud and share information that may make it easier for us all.  I have been on this path for quite a while and if I can help someone who is not as far along, then I would surely want to do that.  I wish you all of you and those who love you a cozy and warm Winter!

To Do or Not To Do......

I have talked about the idea of making decisions on energy consumption and the benefits versus the downside before.  What???  What I mean is that for those of us with a chronic illness, going out or doing things must be weighed with what the consequences may be.  For me, I can occasionally go out to a function, shopping or a visit somewhere but I am always aware there will be a cost and sometimes it is bigger than I anticipate.  Over time I have learned ways to lessen the damage and to make the down time a little shorter after an outing.  If something comes up and I have not had time to plan, then I will surely pay the price and so will my family.

Another thing we always must be aware of is that my ability to do something can change from day to day so planning is always noted with the fact that I will if I can.  Unless it is something very important, many times I do need to change my plans and make the decision to stay home and rest.  Life goes much smoother and is more enjoyable when I listen to the signs and realize that today is not going to be the day and that is okay.  One of the most important lessons that I have learned is just because you can does not mean you should!  Lots of trial and error and long bouts of being down and out have taught me this all important rule.

Another issue that rears it's ugly head for me is that when there are plans and something that I am looking forward to, I have the tendency to get over excited and not be able to sleep.  That is the surest way that my plans will need to be cancelled.  Extra rest is necessary to be able to get out and enjoy something and without sleep, I am headed for disaster for days on end.

Last night my hubby and I went out, got dressed up and attended a local charity event that was important to us and part of his job at times.  While we were walking to the convention center where the event was held, I mentioned to him that some people looking at me would thing that I look absolutely fine and would be appalled to know that I am on disability.  My hubby quickly replied that if they knew what I had to go through before and after doing something like that, then they would understand.  It was a short evening and of course we came home and back into jammies I went and collapsed on the couch......but for me it was worth it and we had a really nice time.  Today will be a day of recouping and that's okay too because we made the decision to expend that energy and did so wisely.  Just like the spoonie adage, we must chose wisely to make life more liveable!

It Took How Long....

I am asked many times how long it took me and how did I get my disability.  Many times I don't tell the whole story because I am afraid it will discourage others and they may not even try when they really need to be approved.  It is a very long process fraught with many battles, lows and highs and frustration.  But, having said that, I will add that it was worth it and I do think it really helped me to realize that some things are truly worth fighting for.

Here is my story and I tell it in the hopes that it will help others in the decision process and give some the courage to do what they need to do.  I first filed in February of 2007 ---- I was diagnosed in December of 1990 with ME or Chronic Fatigue Syndrome and Fibro in June of 1991.  Before being diagnosed I worked full time with three children and was miserable much of the time.  My symptoms started suddenly in 1983 after a bout of Mono that never really went away.  I would get better and then be sick again.  It actually turned out that I had had a bad case of what they called Glandular Fever at age seven which we now know is also Mono.  So...this bad bug was probably dormant somewhere for a very long time.

Back to my disability story - I was laid off in January of 1991 from my full time job and was unable to get another because of this illness.  After that I made up my mind I would find work that I could do from home so that I could rest and work at intervals that would work for me and besides I was relatively young way back then.

I was able to keep working at home doing contract administrative work and I loved it until Osteoarthritis reared it's ugly head and I began to have debilitating cognitive issues that made it impossible to do my work.  When I first filed in 2007, I quickly became frustrated with the process and gave up and continued to try and work part time and my family helped me try to keep my contracts.  That didn't last and the stress of trying to do even part time work was taking a huge toll.  On April 16th, 2008, I gave up and let go.  I realized that I no longer had the cognitive abilities or energy to work and my husband who is the closest person to me, agreed.  He knew it was time as well.  Even still, I waited until October of that year to file again.  I kept hoping I would find something I could do and believe me over the years I have tried many things.  I just didn't want the stigma of receiving disability and I wanted to be free to do what I wanted to do.

I downloaded the forms and completed them myself and mailed them off and for the first few weeks I thought the process was going to move better this time.  I spent much time on the phone with representatives from our local Disabilities office going over my information and answering questions. They talked with my husband at length for health and behavor1al history and details about my daily chores and even if I cared for pets at home.  I started to believe I would be one of those very fortunate few who just might get approved the first time around.  Looking back I realize that I should never have let myself believe that.  I later found out that it was very rare to be approved in the first round and you almost always have to be terminal or at the very least have cancer.

The day before Thanksgiving that year I called for a follow up and was told that I had been denied and that they had suggested that I go back to what I was doing.  I was truly shocked about how upset I was at this determination.  I knew I would be disappointed but I was so upset that I really had trouble consoling myself.  I later realized that to me it was just another way that I was not being taken seriously, that my illness was not being understood and these nameless, faceless people were making a decision about what they believed I could do without so much as a meeting.

At this point I knew that I needed help.  A friend of mine had told me that, when going through this with her husband, she used an advocate and he was able to help get him approved.  I talked with this gentleman several times and I learned many things from his assistance.  In the end I decided to go with an advocate group, Allsup, mainly because they had  a good ratio of approvals and specialized in illnesses such as mine.  After my initial conversation with a representative she agreed that I met all of the criteria and scheduled me for a phone consultation.

The long process began again and I spent many hours completing new forms and in conversation with representatives and with the individuals at the Disabilities Board.  I was also able to get a disk with the information from my decline which gave us some insight into what my doctor's had reported.  The long story short is that I was declined once again.  This time it didn't sting quite as bad because my advocate had prepared me for this and advised that I would have a much better chance once I got to a hearing and was able to meet the judge in person.

Finally I was on the schedule to be set for a hearing in the Fall of 2009.  I was told it could take as long as 6 months to a year to get a date.  As our situation was getting more dire and I was unable to have any medical care during this time, I asked my advocate if my financial situation would change or make my situation any worse.  Surprisingly she told me that I should submit copies of foreclosure notices on our house and medical bills to be considered as a hardship case.  As soon as I submitted this information my hearing was scheduled for December of that year.  I was a nervous wreck - more than likely this would be my last shot and with my cognitive issues, I was not sure I could be my best advocate.

Over the next weeks and months I became more and more anxious and afraid but was reassured by family and my advocate that I could do this.  I wasn't so sure and I knew that I would be devastated by another denial.  Just a few days before my scheduled hearing, I received a phone call from Allsup stating that the judge wanted more information on my initial filing and subsequent one.  Amazingly after a few exchanged emails and phone calls that morning, I was told that if I was willing to go with the April date as my date of disability, then the judge would approve without a hearing.  What????  I was in shock - I couldn't even comprehend what was happening and of course I agreed and the rest is history.  After years of angst and worry and disappointment, I heard or should I say read, the words You have been approved!   A couple of months later I started receiving my benefits and even more than the financial support, I felt redeemed, believed, and absolved of all of my guilt over this illness.  I was finally getting the affirmation that all of this is real and someone understands and know that no one would ask for this or go to these lengths if they weren't really sick!

Okay - what can I share that might be helpful with the process.  These are a few things I wish I had know or understood from the beginning.  I hope they help in some way as you walk this path as well.

• Don't expect any of this to be quick and easy - somehow it could be but don't allow yourself to expect it to be
• Get help - whether it be an advocate or an attorney - find someone you feel comfortable with and go with them - someone who is educated in your illness and filing for disability 
• Don't give up if you really need this - that is how they weed out those of us who are really in need
• Find a doctor who truly understands your illness and know your full medical history
• Keep yourself knowledgeable about how your illness is treated by Social Security and know yourself and what you can honestly do
• Get a letter from your doctor stating your limitations and why you need disability
• Be painfully honest about every detail of how your illness affects both you and your family
• Do everything you can to make regular doctor's visits - even when it is a strain on your budget - I didn't and it hurt my case in the long run.  They assume you can survive if you are not seeing your doctor(s) and in the end my health suffered as well
• Don't let shame or guilt over being ill bring you down - no one would want this or ask for it!
• Keep your head up and find things to keep you occupied and that give you joy - life does not begin after you are approved - enjoy it in some way each and every day!!

I apologize for the length of this post.  I do tend to go on a bit and if you have made it this far, I sincerely hope you gain something from your time reading this.  Good thoughts and blessings to you!

 

So Much Joy and Some Tears....

This year has included so much joy for our family as two of our four boys will be married by year's end.  The first was in April in the beautiful Spring we enjoy here in the South.  The second will be a wonderful Fall wedding which is also a gorgeous time of the year here as it is cooler and the leaves are bright and colorful.  So that means that three out of four have found someone to share their lives with and we are so very fortunate to have such wonderful young women in our lives.

This year also has ushered in the final year of high school for our youngest and he will graduate next spring.  My how time flies and it truly does seem like yesterday that he was toddling around in diapers with a toothless grin and bald head.

Sadly - these happy occasions with all of the accompanying joy and love also bring about tears and frustration when you have a chronic illness.  Now I realize these are tearful moments for everyone, but for me, I shed a few tears here and there for different reasons.  There is the frustration that comes when we cannot afford to do as much as we would like for our boys because Mom hasn't worked for almost five years; there is the sadness I feel when I can't physically do things that I would like to, and be involved in their activities and festivities; and then there are the tears when at the end of a wonderful day of joy I am racked with pain and stiffness that will keep me from sleeping and the impending doom I will experience knowing that this overdone body of mine will revolt and remind me that it is no longer capable of doing what I so long to do.

But along with all of the tears, we experience the joy of our children and the fact that I can be present, even if in a limited way, and enjoy these triumphs in their young lives and make memories that I hope will be with them for a lifetime.  As with anything in life, we all have valleys and peaks and as I have been told, without the valleys, there would be no peaks.  I chose to embrace it all and enjoy every minute for life is short and time will not stand still for anyone.  As the old song goes I wouldn't have missed it for the world......