Press the Rest Button.....

Wow - how many times have I wished I had one of these.  I get so used to being able to have a do over, back up, pause, redo in so many aspects of life today.  But.....in real life how can we reset???  I was hoping that taking an actual vacation this year - first one in years - would help me to find that allusive rest button.  Helped it did, but it was not a magical spell that gave me the brain power to do what I need and want to do.  So I have been doing my best to find tools and routines that will aid in this endeavor.  I thought I would share some of that for those of us who have problems with time, memory and so many more issues that hang out with these chronic illnesses.  It's bad enough to not feel well but we all want to regain some control of our days and as a result, our lives.

This past August I was able to participate in a virtual camp - Camp Reset - presented by Cori Speiker

whom I adore and I love all that she does in the reset community.  If you aren't aware Cori's group is all about resetting our lives, taking care of ourselves, and living a more centered and intentional life.  These things are particular soft spots and weaknesses for me.  For many years I've felt that I just existed and made it through the day.  I wasn't unhappy, I just had no purpose or ideals.   Although I still fluctuate every day, I do feel that I am moving in the right direction and taking control of my day to day.  When I lie my head on my pillow at night now, most days I feel that I have accomplished something and I am excited and looking forward to the next day.  I truly believe we all need that in our lives to feel complete.  Check Cori out and I promise you that if you are open to change you will improve your life in so many ways.

Another thing that I have talked about so many times is pacing!  I know that just sounds like so much hooey and I was not sure what others meant in the past when I heard this idea discussed.  Simply put you pace your way through your day.  Using your energy just like any fuel, you move and accomplish things for a bit of time and rest then repeat throughout the day.  While I'm resting I will look through my phone, send messages, read...just whatever I feel like.  Other times I may nap a bit to refresh myself.  No matter what I do while resting it has to refuel my brain and body.  Then I am ready to take on more tasks.  Using this method I am able to actually accomplish things I haven't been able to do in years.  It's always been my go to to push myself to full exhaustion and then I'm down and out for hours and maybe even days.  If you Google Pacing through illness, there are lots of articles out there about this.

One of the most important things I have done to aid in pacing is to create a space for myself to have

downtime while still functioning.  In our little office I have a small love seat that reclines and a work table that serves as my desk.  I can sit in this seat and have my laptop plugged in, my phone charging, and my tablet streaming anything I would like to watch from YouTube videos to television.  The fact that it reclines makes it so much more restful for me.  This little room is just off my kitchen which allows me to get tasks done a little at a time during the day.  In the past I have tried to do this in a bedroom or our living room and it just never worked - I felt too isolated in the bedroom and too much in the way in the main living areas.  I also believe that most of us need to be able to have a quiet restful place to recharge throughout the day.  Our brains are just not wired to handle the static of life in large amounts.  It can be a corner, a cozy chair....whatever makes you feel comfortable.

Now that I have changed the way that I do things I am finding that my rebound from overdoing is so much better.  What used to put me down for days or even a week will now usually last less than a day. This is a major accomplishment for me.  I really believe that finding a balance between doing and not overdoing is one of the most important things we can do to care for ourselves.    I've heard much criticism of self care as being selfish.  I don't see it that way at all.  Self care is what allows us to recharge so that we are able to do for others and be present in our lives.  It's as necessary as food and water.  We can't be there for anyone else if we are running on empty.

I was diagnosed with Fibromyalgia back in 1991 well before it was a popular diagnosis.  I have been working to have an Attitude of Gratitude.  This is another most important component of dealing with chronic illness.  I have found that anger, frustration, and feeling sorry for myself are all detrimental to both my mental as well as physical health.  Believe me, I still have those moments but I feel that I'm in better control of them and they hang around for shorter periods of time.  I've been
through many phases and tried all sorts of things to improve.  Over the years I have collected several other health conditions that complicate my diagnosis.  I know that I am so very fortunate to be able to still function and I do my best to live my life with an attitude of gratitude....some days its really hard but in my heart I know and realize that I am so very blessed.

I hope that some of these tips are helpful to all who suffer from any type of chronic illness.  It is also my hope that we all bring more understanding to both mental and physical illnesses because without love, kindness and understanding we can not continue to heal and share our world with each other.

Where Do You Land....

I have been thinking a lot lately about why I struggle so with organization and getting anything accomplished.  There are the obvious reasons that come with any chronic illness but it seems to be more than that.  When I worked from an office at home for over 14 years, I had a spot to gather my thoughts, look at to-do lists and just regroup.  It was my desk in our home office.  After I was forced to give up my work that was the absolute last place I wanted to be.  I moved my things out of that space and gave it to my hubby who needed a home office.  At about that time our 3rd son moved out on his own and we moved our youngest to his room and that left a small bedroom open for my long wished for creative sewing/craft room.  This would be my space!!  Yay!  A place to land and be creative as well as keep up with the day to day of our lives.  Well here I am 6 years later and I still haven't really embraced the new space.  We all need a landing - our own unique little spot to keep a calendar, notes, lists, etc. to keep things on track.

This image is one I pulled from Google and it represents what a landing for me would look like if I could make it happen.  Could it be that when confronted with the changes in our lives that a chronic illness bring, we have trouble finding a place of comfort???  It doesn't have to be this large or elaborate, a corner with a comfy chair and good lighting would do.  For me I feel like a vagabond, I drag my things from space to space in this house.....lately mostly in the bed but it never really feels like "my" space.  I am struggling with this and hoping to find a new landing in the new year.  I feel it is integral to peace of mind and to getting anything done that I truly want to accomplish.

Maybe this is jut me - everyone might not feel compelled to seek out this kind of refuge but I do believe that most of us who live our lives primarily at home, need to feel comfort there.  I do love our home and I am always so relieved to get back here when I leave......I just want to find that one spot again that gives me that ahhhhhhh feeling.  That ease of knowing this is where I belong.  This is where I can create, read, meditate, whatever it is that makes me keep going from day to day.  I will continue to strive for this for I know it works for me.....  I encourage everyone who struggles with a chronic illness and is home bound to make this a priority..just for you!

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/

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?

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......

It's All About the Balance.....

As I was about to doze off last night, I thought about the unbelievable balance that is involved in all lives - for all living things really.  Then my mind quickly moved on to the required balance of lives that include a chronic illness.  Many times we think that illnesses like the ones we experience are different because we many not wear the obvious label of being ill.  But...not well we are, and the balance we must find each and every day requires quite the learning curve.

I, like so many, have fleeting feelings on a good day that maybe it's gone - maybe it never existed and I am fine.  Maybe the collective "they" were right and it is all in my head!  Then, like the sun rises, the reminders of my illness creep back in and I am once again reminded that when I push myself out of balance, I will quickly be given small warnings that let me know that more trouble is on the horizon.  I am so very fortunate that I am in a place in my journey that my severe pain is not daily any longer.  If I am very careful and work very hard to balance my life, my symptoms are lessened and I can do a little more than I once could and I have some really good days.  This has been a long process for me and started over 20 years ago.  In the beginning I was miserable much of the time.

So what is the point here - life is a difficult balance for all life forms but if you do have a chronic illness, it is not a choice and it is imperative.  If you have children and or a spouse, a job, etc., the balance becomes even more important and you must save the best of yourself for the most important items on your checklist.  Chose wisely and pick your battles - know your limits and tune into your signals and know when you are abusing your system because as surely as the sun rises and sets each day, your more severe symptoms will return with a vengeance if you push beyond your limits.  This is not always fun - my hubby helps me by reminding me of the small things that I tend to do like staying up too late, not eating right, doing too much, letting things upset me, and over thinking things.  Small things for most but very big things for people like us....know your triggers - make a list if you have to.

Another thing that throws a juggling ball back up to our tightrope is that our triggers change and morph themselves over time so be alert for changes and know your body and mind.  It takes time and being quiet to listen to what your body tells you, but the payoff is so very worth it.  Over time you will have many more good days and learn to lean into this new life and make the very best of it.  It is different but it can be okay too!!

A New Year.....

A fresh new year ~ a fresh start - hope.....that is what most of us look for each time a new year dawns.  At least I know that I do!  I realize it is just another day on a continuous calendar and nothing really changes but I like to believe that it does.
I love this graphic - the title is "Fish out of Water" and so describes the way that those of us who have invisible illnesses feel much of the time.  We feel out of sorts and out of place.  It is very hard to understand something you can't see and we all know this.  But....each and every year we all hope and have faith that one day these diseases will be better understood and most of all that we won't be labeled as lazy or crazy or worse.  One day a new year will dawn and people will say "How did they do it?"  "How did they go on knowing they were being ostracized for something that was out of their control?"

I know that I am very fortunate in that I still am able to enjoy life even with it's changes and new direction.  Many are not so lucky and spend each day, each week, each year, dealing with severe depression and isolation for reasons they cannot comprehend.  We all have to open our eyes and see that just because we may not understand and may not see the problem, that does not mean that it does not exist.  Doctors, care givers, family, and friends owe it to our loved ones with these types of conditions to listen, seek to understand and learn all that you can in order to be supportive.  It can be a matter of life and death!

Déjà vu ........

Many times in life we are given opportunities to get a glimpse of past events in such a way that we relive them - just a little.  Déjà vu (French pronunciation: [deʒa vy] ( listen), literally "already seen") is the experience of feeling sure that one has already witnessed or experienced a current situation, even though the exact circumstances of the prior encounter are uncertain and were perhaps imagined.  Last night I had such an experience and it was awesome - sort of!

Hubby and I attended a reception and banquet for the local Urban League.  Now if you know me at all, you know that I rarely leave home and surely don't attend functions like this any longer.  Okay - he talked me into it and he needed to go so I thought it would be a good night out for us.  The evening started with a reception at our Governor's Mansion - neither of us had been so it was very nice.  We met a most lovely young women serving drinks at the bar and she so impressed me with her poise and demeanor.  When I went back for my second diet coke, she remembered what I already had and asked if I would like another.  So refreshing!  When we were ready to leave, I had this impulse to thank her - I was not sure she would know what I was thanking her for, but just the same I felt compelled to do so.  I walked over to her in the hustle and bustle and she read my face and said Did you need something?    I put my hand out to shake hers and embraced it with my other hand and said thanks so much.  The surprise and wonderful smile that flashed across her face was the highlight of my evening.

I learned a long time ago that those who serve us in any capacity are angels in their own right and since I have not normally been the servee but the server, I feel strongly about appreciating those who do so with grace and kindness.  Back to my Déjà vu....in my old life I was a meeting planner and admin and the second leg of our evening was a reception and dinner at our city conference center.  Ah - as we walked into the center, I felt the old pangs of nervous energy and excitement.  Throughout the night I was mesmerized with the flow of the dinner and the hard work being done by the  hosting organization.  This is one of the few times that I have attended a dinner such as this and not had to worry about every detail and the behind the scenes effort.  So refreshing and sad at the same time.

Now I fully realize that I am no longer capable of doing a job like this, but it is so hard to let it go.  Thoughts cross my mind that I could and would and wish that I did.....but then reality walks back in when I try to extricate myself from my chair to make my way to the restroom or when the pain of sitting too long start to fill my consciousness rather than the program. 

As surely as the wind blows, the pain, discomfort and more welcome me in spades by the time I reach home and I had a very restless night of pain alternating with other issues.  It is then that I know that my dream of doing such work is long gone but......I still know in my heart that I am so fortunate to have once done it and to have a life left that is still worth living.  I could spend a good bit more time on the mourning of a life once lived or move back into my new world and make the most of it for what it is now.  That is what I chose to do - it is not always easy but it is doable and it makes the path easier if we don't dwell on the past - you cannot move forward if you are looking backward.  Chose life rather than the past.

When Your Faith is Stronger.....

This past week has been an unusual one for me - I am thankful that it is out of the norm that I have this type of week.  In the last few days, a friend I went to high school with passed away suddenly at 55; a friend that I used to work with lost his beloved 14 year old daughter; and an online creative friend who had had a miscarriage 3 months ago found out this week that she is now carrying a molar pregnancy - no baby and the cells were malignant and had spread to several of her organs.  She has since had an emergency hysterectomy and will have to begin chemo within the next few days.  She is the age of my older boys - just shocking!  A young local weather man lost his Grannie - a Grandmother he shared with each of us almost daily - we all felt we knew her too.  A young women that I know only through my reading about her, is experiencing much pain with one of her children and mental illness - the pain that only a parent can experience when their child is in pain.  While all of these events are unrelated, I am touched by each of them and I feel so much pain and empathy for each of these families. 

I realize that in the scheme of things within the universe, these events happen all the time and the world keeps turning and the sun still comes up every day.  This week has given me pause - a reason to look at things a little more clearly and to realize even more that time is limited, life is short, and we must make the most of every day.  I have spent a good bit of my life in limbo and not really appreciating that this is not the rehearsal and life is not infinite.  While most of us will never know how many hours or days we have, we must breath deeply and do our best to enjoy our life and live it to the fullest - to the best of our individual ability!   So---when, I am tempted to bemoan my own situation, I will remember these brave wonderful friends and their own crosses to bear and how well they have handled adversity and pain and aspire to be much like them - if only a little.

A Brain is a Sad Thing to Waste.....

My life has been a little upside down for the last few months - okay, it's always upside down but maybe a little side ways too.  ;o)  For those of us with chronic illness in our lives, sometimes it is hard to pull out a list of thank yous even though we try, because-----we know it could always be worse.  Today brought to mind that we do become complacent and take things for granted.  I am just as guilty of that and sometimes more so than most.  But - I am trying to learn to make myself more aware and I do believe it in turn helps my health and thereby the lives of those around me.  Truly - frame of mind - outlook - perception - these things can make all of the difference in our quality of life.

A few months back - in June - I was working on this very blog post.  We had had a very bad storm the night before and lost power.  We have a pump so that means no water, etc. as well as electricity and it was very hot!  It was out until about 10:30 that morning - not unusual - about 10 hours all together.  I woke early that morning probably because it was hot and I didn't sleep well.  As I finished the first paragraph of this post, I began to feel really bad and very sleepy.  So, I stretched out on the couch feeling very thankful that the power was back on and so very thankful for air conditioning.  A short while later I was awakened by the pounding and bouncing of my heart inside my chest.  What in the world - it was as if someone had connected power and was charging it up.  I sat up abruptly which made matters worse.

It was then that I realized that I was in A-fib again - just much worse than ever before.  What do I do now I am thinking.  The last time this happened I had just gone to bed and I waited it out for about an hour and when it didn't go away, we made the trek to the ER just to have it stop about 5 minutes after arriving.  Those of you who have had this will know - if they can't hear it then it is a waste of time.  So - this time I was determined to have it documented.  My son was playing an online video game in his room and I didn't want to alarm him.  I know that this is not going to kill me any time soon so I decide to walk to my neighbor's house - we have nurses living on each side of us.  It is approximately 100 feet or more between each house.  I decide to go for the mail first which is across the street from my house - thinking that maybe it would go away.  By the time I reach the mail box it feels as if someone is strangling me and I am getting shorter and shorter of breath.  So I try the first neighbor on the right - I feel I am about the pass out when I make it to her door - both cars are there and the garage door is open....but..no answer at either door.  Choking is getting worse - I am thinking I am going to drop right here in this heat and how long will it take for someone to find me.  Of course I am dressed like a bum and looking worse than a homeless person.

Miraculously I keep going and I make it to the neighbor on the right side.  I know they are home but no answer at first - what in the world.  Finally the nurse comes to the door - they had been out back and could not hear me knocking.  As soon as I tell her what is going on, her expression changes and she takes me inside and finally she can witness the bumpy crazy out of control heartbeat that I am experiencing.  Okay - if I die now I will feel better because my family will know that this is REAL!!!

Those of you who have chronic illnesses will understand this frustration - no matter what happens to me now it is excused because of the diagnosis I already have.  Long story short, my neighbor talks me into letting her call an ambulance so that treatment can begin right away.   They clocked the heartbeat at around 189 and confirmed it was in fact atrial-fibrillation.  Since this was at least the third time I knew this had happened I felt so vindicated!  After about 7 hours in the ER, they were able to convert my heart back to a regular rhythm and with a small amount of begging they allowed me to go home if I promised to see a cardiologist on Monday.

I met a wonderful cardiologist a few days later and he now has this under control with some changes in my medication and severely limiting caffeine intake.  That's a bummer but it is doable and after about 3 weeks of the new regimen I adjusted fairly well.

It has been a pretty busy year on the health front - I had testing for memory issues and speech problems as well as an updated MRI.  From that the conclusion is that I have cognitive impairment with no explanation as well as depression and anxiety - who didn't already know that???  I also had an MIR of the cervical spine and found that along with severe OA there is a bulging disk at C6 and C7 that is causing the little electrical responses and a whole lot of pain in all sorts of places.  Soon I will have an epidural for that and also the L4 and L5 issues and hope that can put off any thing more invasive for a while.  So along with the ME and Fibro, bad knees, carpel tunnel and severe OA in my right hand, and Padget's Disease in the tailbone, I am still considered to be doing good by my Internist - oh and lets not forget the high fat lipids, high blood pressure, high cholesterol, hiatal hernia, GERD as well as asthma and allergies.  Did I forget anything??

I don't mention this long diatribe (a term a family member used once) to bring attention to myself or because I am feeling sorry for myself.  It is because we all have to be aware of our health, our bodies and what is being done to safeguard our health!  We are not only our own best advocate, we are really our only advocate.  No one knows what goes on with you as well as you do and I am absolutely confounded when I visit my doctor's office and he really has no idea what is going on until I remind him again and again!  Now I understand he has lots of patients and people who are much worse off than me and I truly understand that people like me are very frustrating for him......but we still need care and undivided attention for the few minutes we are in front of them!  Don't accept any less - you are worth it!

Life is great and I appreciate every day that I am fortunate enough to have!  As I have said before, while I am not dying today or tomorrow - I, and all of those like me, still deserve health care and attention to our needs just like any other patient!

Mary Hart.....WTH?????

OK - so I am watching television waiting for our frozen pizza to bake.  Entertainment Tonight is having a special good bye episode because host Mary Hart, is leaving after 29 years.  It is filled with music and dance and laughter and tears.....and then - there it is - I realize I am wiping away tears.  What the hell!@#!$%.....OK, I like Mary Hart but this is ridiculous.  After a few minutes I realize that I am not shedding tears for Mary - they are for me.  I realize that I feel her sense of loss so completely because I have had to say so many good byes over the last 20 years and unlike hers they did not come with music and cheers.

We all have endings to things in life - all good things must come to an end  - and all that, but how you say good buy - how you end something makes all the difference.  Also - the reason you end a particular thing is important as well.  Mary is moving on in life and doing some things she really wants to and she leaves feeling loved and missed.

I think back over the last two decades and remember loosing the only job I had held in my adult life - I had worked there for over 17 years and I loved my job.  But, having said that, I knew that I could no longer do the job due to my illness and I knew that I was laid off - more than likely because I was not well and the company needed to regionalize our department and it was known that I would not be able to meet this challenge.  I came to believe that was the best thing that had ever happened to me and the right thing......but the loss and resulting mourning were inevitable and I can still reach out and touch those feelings.

Again a few years ago, I was forced to give up my administrative business after 14 plus years because my health continued to become more and more unpredictable which makes me unreliable.  Again - no balloons or music - no fancy send off - just loss and pain and mourning.

While watching Mary Hart's tremendous, although somewhat sad ending, it is clear that this is a celebration.  I have to admit to myself that I feel cheated - I have worked for over 34 years of my life and illness has cheated me and taken away any pride I could have relished in moving on from these endeavors.

Well, Mary has moved on already to her new life and I am cutting that pizza and ready to put this out of my mind once again.  I know there is nothing to gain by wallowing in these feelings of loss - for those of us who suffer from unacceptable, invisible illnesses, our time for celebration has not come.  We must pat our own backs and know and believe that we did what we could at the time.  We have to keep moving through life and do what we can to accept our new situations and appreciate them for the value they bring to our life.

If anyone had told me 20 years ago that I would not be driving, rarely leaving home, depending on someone else for my transportation and making many of my decisions for me, I would have said NO WAY!!!  Well Mary Hart - my reality may not be anyone's dream, but it is doable and it can be the best it can be and I am thankful each and every day for this life.  As I learned today from another person ending something in their life (Oprah) - we must inhale.....don't just breathe.......take it all in!

Shopping.......Ahhhhh.....

Shopping - oh how I used to love to go shopping or even just browsing!  How do you get the things you and your family need??  Groceries, clothing, just the little things you need or want to chose yourself - what a dilemma.....at least I find it to be.  I rarely can manage it any longer and even if I do have a good day and try it, there will be a hefty price to pay for the time out.  I am very fortunate that my hubby manages a grocery store and therefore he can take care of that chore.  But---there are times when I would so love to take myself to the store, pick out food and be able to prepare a meal for my family all by myself.  I can no longer do that and I miss it.

I am learning to shop online and most of last year's Christmas was done that way.  It is so wonderful to have that option and I am thankful for it but it still is just not the same.  Things don't always look the same in a picture and many times don't fit right or work the way you thought.  But, with a bit of research and reading through feedback when you can find it, it can be done.

Since my hubby works lots of hours and is gone a good bit, I am trying to make our time together less about his having to drive me out to do necessary shopping.  He doesn't mind, but I know it keeps him from being able to do things he enjoys.  What are your solutions for shopping?  Can you still do it on your own?  Do you enjoy it at all?  I would love to know how others handle this challenge.  It will surely help us all not to be shopaholics!  ;o)

Pain is Now in the Small Things.....

For a long time now, I have been able to control my pain somewhat by what I do physically.  This past December that came to an end - abruptly and does not seem to be changing....the hard thing is that I am not sure why.  I would suppose that is the question we - those who are afflicted by these chronic illnesses - ask most often.  What did I do???  What changed???  I didn't do anything different we tell ourselves.  As a long time member of this club, I can tell you there is no reasonable explanation on why things change for the bad or even the good.  We must learn to roll with the flow and just play the cards as they are dealt each day.  I try to make light of it and that is how I deal - your coping method may be different but as long as it works for you, that does not matter.

Please don't think I am complaining when I say this - this is just reality and I express it only in the hopes that if we can voice our realities then we help each other.  I know for me, it is so comforting to know that I am not the odd ball - I am somewhat in the norm somewhere.

The badge in this post is from my hero Misty - she creates these to give us a laugh and to make us feel better, if only for a bit, and to voice what we think each and every day!  I cannot tell you the number of times I have been told - But you look great - HA I say!  You don't see the extreme dark circles I have labored to cover and the way that I used to look - I was not always an old hag - really...;o)  Anyway - I know we all do it - we make assumptions, opinions about what we believe about others and I do it too.  But.....having said that - please try not to.  You may see me and say I cannot believe she is disabled or sick at all, but come and spend 24 hours with me.....you will walk away enlightened.  I am sure that is true for most of us - we compensate and work hard to be as normal in our appearance and in what we do when we are "on" but that is not our reality. 

As I have droned on here before, my reality is one of sleeping 12 hours or more a day and not because I am lazy but because I have to so that I can have a few alert hours each day.  My reality is being in pain just doing normal things like washing dishes or emptying a dishwasher, falling unexpectedly, forgetting what I did 5 minutes ago, being extremely irritable for no reason at all, only getting dressed when necessary, rarely wearing shoes because of the pain, and I could go on and on.......but I won't.  Aren't you glad.....;o)

But just know that when you see someone like me and make an assumption that they are fine, just remember that NO one would chose to be this way - We survive and make the best of this life and smile and go on because what choice do we have.  For our sake and that of our families we put one foot in front of the other and just hope that most people are not STUPID!  ;o)

So You Hurt.......So What.........

How many times have you heard this??  And to go with it - I hurt too and I am tired too!  We need better words - explanations - more to say about what is going on inside our bodies.  I am sorry, but if you haven't been down this road, you just cannot imagine - you can try, but you can't get there.  Full disclosure - this is a bit of a rant but I felt I had to get it out.

I am one of those people, as I have said many times, who is glass half full....more than likely because I am just so very relieved not to be where I was just a few short years ago.  I was trying to continue to work and be miserable and there seemed no end in sight - except maybe death.  That sounds extreme but it is true.  When I finally gave up on that illusion and admitted I could no longer pretend, then my world got a little brighter and has been since.

I try to reach out to those that are suffering the same, and stay positive and offer a little insight into what I have learned the hard way.  Never, never do I intend to imply that I know it all - no one does in this case - the all is unknown and the future is unknown for these types of illnesses.  We walk the path of uncertainty and if anyone who walks ahead of me passes back a few good tips, I am happy to receive them.  I, in turn, wish to keep an eye on those following my path - it is not one I would choose and not always very pleasant ---- but - if we hold hands and share our experiences we can make the best of this journey and realize that it may not be what we saw for ourselves, but it can still be an enjoyable life, just different.

Having said all of this - I can only say - be open to those who reach out for your hand, try to trust and listen for they may be carrying just the nugget in their backpack that can be useful to you ---- for many times those we entertain are angels unaware.  Don't always assume that concern and care are intrusive and annoying - many times they are just truly care and concern and a true desire to reach out.  How will you ever know if you keep those hands shoved in your pockets tightly clasped until you are bare knuckled?  The answer is - you won't!  Take a chance - live this life the best it can be lived.

Okay - I warned this was a rant but I get so frustrated by the stigma of this mysterious invisible illness - it causes us to doubt each other even when we are the same.  Until we decide to work together and learn from each other, no one else with take us and the ugly "F" illness seriously!

Falling Down, Falling Down.........

Nope - I am not talking about the children's nursery rhyme and I am surely not My Fair Lady.....;o)  It seems that I seem to be falling down at every turn lately and although I have been very lucky about the damage it does, it is a little disturbing.  I know this is common for issues like mine but it is getting pesky.  For the first time, last week I fell face first --- I still cannot figure out how that happened.  I was walking and then the next thing I knew is the floor was coming to meet my cheek very quickly and there was nothing I could do.  What a loud boom!  I know the holiday rush makes it easier to over do and get hurt - but I am trying to take my time and take it slow - not always easy.

Since then, I have fell a few more times and this morning I found I had a huge bruise on my ankle and foot and I cannot remember for the life of me, hitting it.  Does any of this sound familiar.  I know my balance is a problem as it is for most but the frustrating thing is that there seems to be no warning - one minute all is fine and the next I am speeding to the floor or hanging onto whatever I can grab. 

Solutions - well for one a cane is a huge help but I am embarrassed about using one because I feel that people will see me and think that I don't really need it.  Most of the time I don't, but who knows when I will......so the smart thing would be to be prepared.  We can't worry about perceptions - it is important to do what is best for your particular situation.  There will always be grumbles and misunderstandings about these conditions and if I had a dollar for every time I have been told "I have some arthritis too" or something similar then I would be very well off. 

I believe the lesson here is - do what you need to do in order to take care of yourself - no one else can make those decisions for you.  Your doctor can help you find the best solutions and possibly save you lots of black and blue marks!  Take care during the Holidays and enjoy - just don't over do --- Christmas in a cast won't be fun.

Before You Know It..........

When I was young and I would ask my Daddy a questions about time, his answer was always "Before you know it".  As I get older I have realized that is one of the most profound things he ever told me.  We would be driving somewhere and I would ask - "when will we be there?"  - his answer would always be.....before you know it.  When my boys were young they would ask "When will it be mornin time?" -- before you know it....one of my favorite memories - I can still hear their tinly little voices.  That became our ritual with their prayers and tuck in.  When I asked one of the boys last night if they remembered this, it hit me that this one statement is so prophetic and just a good no nonsense piece of advice

When will I be all grown up?  When will it be Christmas?  When will I get married? 
When will my children be grown?
When will I be old and gray?

When we are young, adults always tell us to enjoy every minute because time passes so quickly and you must make the most of the present.  It seems like just yesterday, I was young with babies in my arms - 4 sweet little boys and I blinked my eyes and they were graduating and grown and it truly seemed like it was before I knew it!"  Don't waste time hanging out in the past or dwelling there --- nothing good can come of it.  Try not to waste time worrying about the future because tomorrow it will be here and you will have lost time in the present worrying about it.  Live each day to the fullest - find the good in it and count your blessings - even though some days they may be hard to find.  As my hubby always says age is a high price to pay for maturity but we don't have to wait until we are old to enjoy it.  All of this sounds like so much trite advice and just cheery nonsense but it is more true than we know.

All of this came to me when I was mulling over the fact that I had been in the throws of this illness for at least 20 years....wow 20 years - I have let it define me and let it push me to let life pass me by.  There is no excuse for it and it is my fault -- no one elses - sort of a subconscious decision - not one I have made with thought or intent.  Well - we all have to be present in our lives and along with the daily fight remember that you have to take time to live your life and make most of it.  Make decisions with living in mind - not submission.  Poke the bear, smile, laugh and enjoy because no matter what we do, good or bad......it will all pass us by Before you know it!

Autumn - A Wonderful Time of the Year.....

I absolutely LOVE this time of the year - Fall!!  Every year, as I have written here before, I try to hard to live in the present and enjoy every  minute of it.  In our warm Southern climate, it passes very quickly and before you know it December is here and we are in the throws of Christmas and the new year planning.  I so want to breathe in the sweet fall air - in our case absent of humidity and the small cool breeze along with the beautiful reds and golds and oranges of the leaves as they flutter from the trees.

If I don't make myself more aware it will pass me by in the blink of an eye and I will be dreaming of the time when Fall visits once again.  Life with a chronic illness is much the same - if we don't consciously live in the moment we will get bogged down with the mundane daily issues of our illness and miss life as it flies by us at warp speed.  I cannot tell you the days, weeks and years that I will never get back, that I have wasted obsessing and dwelling on something that I can't change and in the long run may even make things worse for my health. 

Don't be afraid to enjoy - go outside and take a short walk if you are able, visit a place where Fall abounds and soak it in....put some little reminders of the season around you at home and enjoy the color of it all.  It will give you a lift and a smile and believe it or not it can make you feel better both mentally and physically.  Life is short - engage!