HOW DO YOU DEAL WITH THOSE WHO SAY THEY "UNDERSTAND"??

How do you deal with living everyday in pain and not able to accomplish things that should be easy to you?  Then how do you deal with those who say “oh I completely understand” When they have no idea?  They have no idea the pain you are in, the ripple effect it causes in your home – even on a daily basis! 

For example, I can not fold laundry anymore – it’s just too hard, so I wash, dry and have the kids get it out of the dryer for my husband to fold.  If he can not get to it right away it piles up and sits there, I can’t do it – but that big mess in our room of clean clothes causes a ripple effect on moods.  To me it’s a reminder of the things I can not do that of the age 36 I should have no problem doing.  It’s a reminder that I have to lean on my husband yet for another thing.  This sometimes will get me down, the mess turns the energy into chaos then before you know the kids are chaotic or they are getting yelled at due to frustrations.  Now sometimes it is well deserved but sometimes maybe not so much…. Then the kids are upset, I am upset, my husband is upset – hell even the dog is upset at this point….

How do you deal with this ripple effect?  Its not like you can talk it out with your friend who doesn’t have these same issues, know the emotional pain fibro/mfs causes… if you do engage with this conversation who doesn’t understand – how do you tolerate the “ I understand” comment?!?  You know they mean well and thier intentions are good - but how do you get through it?

THOSE WHO SAY “I UNDERSTAND”

My day started like any other day - get up ( 30 min before I need to) take and dose of my morning meds, wait for meds to kick in while enjoying my morning coffee, get ready for work,  ( thankfully I only to go into the office a few days a week) hustle get the kids out the door etc…  The fact that the drive to work was a little less then normal should have thrown warning signals off in my mind, but I pushed them back… as I was in a rush to get there early because I had to leave early – naturally I was stuck in traffic!  By the time I reached the office parking lot, I was more then flustered and of course hit the curb frantically and embarrassed.  I began to shrug the morning rush off and settled down in my office to get some overdue work done. 

My peaceful morning that I just found in the crowd of annoyances began to come crashing down on top with a confrontation with a colleague. I truly hate confrontations; I believe everything can be worked out with a compromise.  I am sure you fibromites know that in our daily lives we have to make things work, even simple things like how many times we get up, or each day when we hit our wall (mine is typically between 1 or 2pm) the wall where the muscles start to get stiff, start spasms and start that daily aching like you have the flu.  Anyway, I had made a mistake with a new responsibility at work – honestly I don’t even know how I did so, but none the less it was a small mistake that ended up costing someone else some time to help me correct due to me being out sick.  This mistake caused my co-worker time as my office was being used by someone and the co-worker could not get into my office to get to my files.   So this co-worker demanded that I keep these particular files in where she keeps hers. (Previously I had asked my manager if I could keep these particular “files” in my office)  My Colleague is sharing some of her work load each week with me due to the fact that it is an overwhelming work load.  Each week I help a few hours.  Since 99% of the time I am the only one that needs to be in my files – I keep them in my office.  Because of this incident she needed a few of my documents.  Anyway because she had to wait to get them – she demanded I keep them in her office, I kindly offered a compromise that literally requires her NOT to even leave her seat.  A few of the reasons I keep them in my office is because 1. It’s inefficient for me to have to get up and go to her office every time I need one of my documents. 2. Its time costly on me, what if I can not get into her office – if she is in the middle of a meeting then I can not get what is mine and needed at the time. 3. By mid day it becomes hard for me physically to have to continue to get up.  Her defense was the following:  It affects HER, HER Time – what if she can not get into my office, this affects HER, stating I only need into the files twice a day - not true, what if I forget something, need to see something, HER response you can look it up on line, well what if I forget something then I have to walk all the way back over here.  (Her office is not close to mine) Again – It Affects HER.  After listening to HER demands I simply offered the compromise one more time of – I will use a small wire mesh table top file box and when I leave each day (b/c I am only there a few days a week) I will bring it to your office then pick it up on the days that I am in and bring it to my office, this way you have my files when I am not here and I can have my files with me when I am in the office.  Again, she demanded she wanted them in her office, proceeds to use the excuse that these files used to be in the common file area and that the only reason they moved to her office is b/c we needed space in the common area….Well that excuse is irrelevant, since they are not in the common area it makes sense for her to keep hers and me to keep mine! I then try to explain to her that physically it’s easier this way on me as well – she actually had the nerve to say to me she understands and proceeds with her demands…. I think one of the hardest things to tolerate (other then the daily pain) is those who say “I understand” when they have absolutely no clue what it is like to live with these diseases.  I feel if she walked 5 minutes in my shoes on a good day she would have never considered shouting her demands at me.  What is sad, this is a woman I thought I was creating a good relationship with.  We have shared many personal stories and she knows a little of my physical elements.  I don’t complain at work about what I am going through physically.  I some how to manage to push through it when I am at the office and really this is the 1^st time I have ever used it to make a statement to benefit me.  What’s funny – like I said the compromise benefitted both of us and she wasn’t even getting put out by it?

This person has also said things like oh you can do this at home while you are watching TV – 1^st off if I watch TV its typically TV time with my family, not work time with my family..2^nd off – if I get a chance to watch TV on my own its usually late and I am beyond exhausted searching for some down time before bed. – So No this person does not “understand”

I don’t “understand” people.  I know that this was clearly an issue of control and she was annoyed she had to pitch in -  but must people fall so defenseless against their control issues that they don’t see that they are being ridiculously difficult.  If people would focus more on kindness and truly listened to what others are saying – the world work so much better….

So needless to say, I offered a compromise, she refused it angrily – my manager approved the files in my office and that is where they will stay! I have not time or room in my life for difficult, unkind, confrontational people….therefore any personal relationship we had certainly went out the window – its strictly business!  I will continue to be kind – but not personal.

Make the appointment for trigger injections or to NOT make the appointment?!? Hmmm...

So it’s been since December 16th, 2011 since my last trigger point injections.  Cancelled the appt in March not really because I wanted to but do to sinus surgery...yet I haven't rescheduled, its almost as if my body is saying it needs a break from the amount of meds put into it.  Although I can not stop all my meds, I am not so sure the trigger injections should have been nixed... Thinking of scheduling soon however it just doesn't seem to fit in the summer schedule as these injections flare up so much for a good week - I am usually down.  I am thinking the week of being down is a small price to pay for some relief.  I spent the entire Memorial Day weekend down due to a pinched nerve that of course flared up the fybro/myofascial pain.  I even had to bail out of my own cookout with friends in my back yard…left for my husband to attend to – I was just that ill…. Ok decision made, I should probably make that appointment!

Wishing everyone a feel good day!

A new drug to manage resistant chronic pain

A new drug to manage resistant chronic pain

A Great Resource Site

http://fibromyalgiacrusade.com/Home_Page.html

Invisible Barriers

It’s so hard to suffer from a disease that is invisible. People may know that you suffer from such things and say they understand – but by no means do they truly understand unless they have experienced it themselves. What are simple little tasks are truly mountains for Fibro/Myofascial suffers.  My most recent experience was with a co-worker I get along with really well, and knows my situation more then some.  She and I have been training each other in being each others back-ups.  As everyone knows in my department my work computer is having major problems and I am awaiting my new computer, as we were doing a simple task I asked her to send me a address label template via word/email as that function does not work on my computer/Microsoft office to complete such a task directly on Word, she says “ you should call IT and put a ticket in for that” I simply said “I have entered so many tickets in on this computer its ridiculous and I am not wasting 2 hours of my time to do so for a template feature” – never mind the fact why would I waste 2 hours on doing so when I will be getting a new computer anyway. Her reply was a snip “well it’s your computer” Yes, yes it is – inside I was cringing, if she only knew what a daunting task of being on the phone for over an hour or more would be like having some IT person trying to fix a problem.  I thought to myself if she only knew how everyday my time (and many like me) has to be used so wisely, certain tasks have to be completed before my 1pm fatigue attack and muscle ache attacks are at their worst and it only continues to go down hill from there on until bed…and then at that how often I am awaken in the middle of the night from pain.  What may seem like a simple phone call to some takes away precious time of getting things completed before your day is shot for those who suffer from debilitating daily pain.

I do not want people to feel bad for me or give me sympathy – but sometimes I would like to walk around with a banner attached to me that reads “Fibromyalgia/Myofascial Pain Syndrome sufferer – please educate yourself before making comments like ~You Should OR Why Can’t You OR Did You, Why Not~ Just as a reminder to people and to make them aware.  It is truly hard to not be able to do the same things you once could let alone try and attack the “simple things” in life. The banner in my thoughts makes me think it would all be easier that way…,  I know reality says it doesn’t matter – some will go on doing and saying the same lack of thoughtless things.  I am pretty sure by her tone, she was thinking LAZY…..maybe…maybe not… I am sensitive to this subject.

Sometimes I find it very hard to not snap back.  Most weeks I work over 50 hrs a week and take care of 3 kids, husband, dog and home like most of us...only for some of us these are all very hard days and tasks. Hard days that no one can understand unless they as well experience it.  So how do you handle situations like this?  I think sometimes silence makes some situations worse.  Its not only hard to figure out how to accomplish things day by day with pain, but how to keep your spirits up daily is work itself…..  I pray for all of the invisible disease sufferers (and visible of course too) everywhere that you find away to make your days better….

After searching the internet for a while looking for some help with changing my diet to aid in fibro/Myofascial relief I came across this page http://www.fibromyalgia-fitness.com/best-diet-for-fibromyalgia.html on twitter and wanted to share.

Invisible

After a very long 20+ hour drive to Florida, it has been extremely difficult to keep up with the kids and everything they want to do on vacation. Although I want to do all those same things the reality is 2 days later I am still trying to recover from the drive here. As we get the kids ready for church with their grandparents the lovely question is asked "why
Isn't Nicole going? What's wrong with her?" Well let's see, 2 herniated disks, fibromyalgia (that flares instantly when the cervical disks hurt like hell) and myofacial pain. (they know this)All of which are invisible yet are extremely debilitating.
I find myself using what little energy I have getting ready for church so I don't look like I'm lazy or just don't want to go. The truth is I very much want to go but will this put me out of commission the rest of the day? We shall see. It's so hard to make people understand something which the can not see......

The Begining

My journey with chronic pain begins five years ago at 30 years old, I was sleeping soundly, and when I woke from what seemed like a fairly good night of sleep even with a 5 month old baby and 2 pre-schoolers I awoke with not being able to move.  My body was completely immobile. If I tried to move in the slightest way it gave me pain like I had never felt before. As I laid there in bed waiting for my oldest to wake up and come in to bring me a phone to call my husband, I silently prayed asking God to please not let this mean I was paralyzed and to please let my baby continue to sleep soundly in the bassinet beside my bed until help came.  Thankfully the good Lord answered both of those prayers.  As I laid there frantically calling my husband we later found out I had a herniated cervical disc pinching a nerve. 

This is where it all began. Long story short, after 5 years physical therapy, epidural injections, healing, reoccurring herniation of discs and more bulging cervical disc, more physical therapy, more epidural injection, etc etc… you get the drift …Degenerative Disc Disease diagnosis wasn’t to far behind and soon after that came the diagnosis of Scoliosis, and then Myofascial Pain Syndrome, then Fibromyalgia and now Chronic Fatigue.  As I approach the age of 36 years old, I am feeling much older then I should.  I am finding as time goes on I don’t really have a handle on how I feel about all of this.  I push my feelings of anger and yes sometimes self pity (although self pity is one of my biggest pet peeves) deep down but lately they have been creeping up and I feel as if those feelings are eating me alive and I am losing what little control I have left and believe me I love control.  

The reasons I wanted to start this blog have a lot to do with wanting to emotionally reach a level of acceptance and connect with others who truly know what life is like living like this. Not only to learn from this experience but maybe even find some laughter in the midst of this chaos.  I am certainly no grammar scholar or fine tuned writer and never claimed to be.  What I am however is a Mother, Wife, Daughter, Sister, Friend – living with chronic pain that will never leave so I am hoping this will be an outlet of better things to come……….