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.....