An Open Letter About Life With Chronic Illness

I didn’t write this but it is incredible. It’s long but I really hope some of you will take the time to read and understand. This is my life with fibromyalgia. I have been living with this since 1999. For me it started as a mono like illness that just never resolved. I was out of work from 1999 to 2003 when I returned to the work force part time. I am blessed today to work for a company that truly understands. Thank you to the writer at Painted Cup who authored this. Name unknown

The Reality of Living with an Invisible Illness

This letter is dedicated to those who believe people who live with an invisible illness are lazy, faking, lying and any other negative thoughts you may have because they ‘don’t look sick’.

This letter is not written from a mean-spirited or bitter place-rather I am writing this letter to help spread awareness about what living with an invisible illness looks like. While you can never truly understand the day-to-day struggles of a person with an invisible illness (I truly hope you never experience this yourself) it is my hope that this letter will help to open your eyes to what other people are going through.

This letter is generalized to include anyone with an invisible illness. There are more invisible illnesses than I can write but some include arthritis, depression, anxiety, fibromyalgia, lupus, polycystic ovary syndrome and so many more!

All of these invisible illnesses take an incredible toll on a person physically, mentally, and emotionally.

Those who live with chronic pain are impacted of course with physical pain but also feel mentally exhausted and often emotionally defeated.

Those with a mental health condition/disorder are both emotionally and mentally impacted but they also feel physical pain thanks to feelings of exhaustion, stomach aches, and many other symptoms.

Here is an example of what a person who is newly diagnosed with an invisible illness goes through:

Let’s use an imaginary person named Annie as an example. Annie is a single mother of 3 children who works as a cashier at the local department store. Although money is tight she is generally a very happy person and a great mother to her children.

One day things start to change…

Annie feels completely exhausted. She was tired when she went to bed but was awake most of the night. She brushes it off thinking it’s just an ‘off’ day. However, this continues for weeks and is getting progressively worse. Even on nights when she does sleep she still feels completely exhausted the next day. She is also having increasing pain in her hands and shoulders making it very hard to scan customers purchases at work. Yet she smiles and puts on a brave face for those around her. After all, she doesn’t ‘look sick’. This continues for months, she starts forgetting simple tasks and feels like she is living in a fog. She’s embarrassed and frustrated with her body. She has seen her doctor over the course of the past 6 months but blood tests and scans all come back saying she is fine.

You’ve probably seen a girl before who is going through exactly what Annie has been dealing with.

Remember the young girl in her late 20’s who parked in a handicapped spot at the store last week? You saw she had a sticker but figured it couldn’t be for her… it must be for one of her parents because she’s young and ‘doesn’t look sick’. The reality is that the parking sticker was in fact hers. She is mortified that she has to use it. After all, ‘she doesn’t look sick’. But if she wants to be able to get food for the kid’s lunches the next day she has to park there. After all, it took her 30 minutes just to get dressed to go to the store. The fact that she can’t park and walk in like everyone else her age makes her feel frustrated and embarrassed. But the pain is excruciating. She wouldn’t wish this on anyone.

Annie feels defeated.

Her kids are still taken care of but they have definitely noticed her damped spirits and mom no longer has the energy to play with them at the park. Annie feels crazy. She knows something is wrong but she looks fine. She feels like no one believes what she is going through. She also hasn’t told many people about what she is going through out of fear that they won’t believe her and think she is whining.

Remember the times your coworker has called in sick and you thought “they are being lazy and just want a day off”?

Not only is Annie’s body fighting her at every moment of every day, she is also fighting a mental war inside her head. If only you could see the bruises from the physical and mental war she fights every day. Maybe then it would be ok since she ‘looks sick’.

“You don’t know why you’re exhausted. You’re fighting a war inside your head every single day. If that’s not exhausting I don’t know what is.” -Unknown

After about a year of this Annie has to go on leave from work.

She physically can’t do it anymore. The pain is excruciating. When you look at Annie she appears to be tired and her smile looks forced but other than that ‘she doesn’t look sick’. Annie hates her body. She feels like it has betrayed her and she feels like a piece of her identity has been taken away. She really liked her job. She was able to interact with others, provide for her family and provide great service to her customers, something she highly valued. But now that was all gone. She is no longer a ‘fun & active’ mother to her children. She is starting to feel like she doesn’t know who she is anymore.

Remember when you thought people were lazy and just didn’t want to work?

At this point, Annie would give anything to be able to go back to work. To feel productive. To provide for her family.

Once she goes on leave the doctor’s start to take her symptoms more seriously.

She eventually sees a rheumatologist and after more testing she is diagnosed with Fibromyalgia. She learns that the symptoms of Fibromyalgia include muscle pain and spasms, fatigue, insomnia, brain fog (difficulty concentrating & remembering), tingling, stomach pain and digestive issues, feeling anxious and depressed and so much more. She feels relieved. She has answers. People will finally believe her even though she ‘doesn’t look sick’. Her doctor recommends a few medications to help her manage the pain and lift her spirits.

Finally, Annie feels hopeful about the future… things can get better.

A few days later it all sinks in.

This is for life. While there are things she can do to help manage her symptoms, there’s no cure.

Now that she has a diagnosis she decides to tell her loved ones.

They have noticed changes over the past year and a half and most are supportive and kind. However, some simply don’t get it. She had a friend say ‘but you don’t look sick, you’re too young to have that’, even with a diagnosis a friend didn’t believe her. She was heartbroken. Another friend who seemed to have good intentions said: “well at least it isn’t something that is fatal, it could be a lot worse”. It seemed like this person’s heart was in the right place but their words cut deep. Maybe they just didn’t know the right words to say.

Annie’s symptoms eventually become more manageable but she still has days (more often than not) when she has a flare, the pain and fatigue take over and she’s defeated.

When we started Annie was an upbeat person, a wonderful mother, a cashier who contributed to society and provided financially for her family. She was proud, confident and happy.

Thanks to her medication Annie is back to work part-time but is completely exhausted after work and has to spend most of the night on the couch. You see, people with chronic pain/illness only have so many ‘spoons’ in a day. Doing an activity takes a spoon, and once the daily ‘spoons’ are gone, she is done for the day. She simply doesn’t have any spoons left. She is still a wonderful mother but feels guilty that she can’t be as physically active in her children’s lives. She still wears a smile but more often than not it’s a way to hide the pain. She is working through her feelings towards her body but at this point, they are definitely not positive, she still feels betrayed.

Now that you have heard Annie’s story, what do you think?

Do you think she is incredibly lazy or do you think she is an incredible fighter? Do you think she is whining or is she hiding much more of her pain than you realized? Do you think she is faking it? Or is she doing anything possible to survive and get through the day?

This letter was not written to get your pity or sympathy. It’s to show you the reality of living with an invisible illness. The people you think are faking or lazy or weak are actually incredible warriors. Each day they fight their bodies physically, mentally, and emotionally to take part in society. They put a smile on their face, show up and do their very best.

“I fight for my health every day in way most people don’t understand. I’m not lazy. I’m a warrior.” -Unknown

It is my hope that next time you see someone who looks healthy, you stop before you judge. Maybe they ‘look fine’ but parked in a handicapped spot. Maybe they ‘sound fine’ but called in sick to work. Remember this letter and think about Annie’s experience. You don’t have to completely understand what someone is going through to be kind.

Sincerely,

A mental health & chronic pain warrior & advocate for others.

New Beginnings – One Day or Day One?

Things have been off for me the past couple of weeks and I’ve been in an emotional place. Have you been there before? You know, those times where your mind bounces from one thing to another and your heart feels heavy but you don’t know why. You know you are searching but you don’t know exactly what you are searching for. You can feel it, that something lying there just under the surface that you can’t quite touch. And so you shrink into yourself and you hide from life. That’s where I have been living as of late. In that disconnect between Day One or One Day. It’s why I joined Samantha’s Start of the Year Soul Planner. And then my visit to my daughters, my days at the ocean (my healing place), the photos I’ve taken, my writing and the gentle nudge I’m getting-they all have me asking what’s next and I know if I can sit with this season of unrest the answer will come. That is the place this blog blossomed from and I know I am only beginning to tap into it.

So I ask myself, why then did I stop? Why did I back away from it soon after I started? Fear? Insecurity? Maybe it’s nothing more than the fact that I have been ill and not at my best. Maybe I don’t need to beat myself up for stopping. If we had a friend who was ill we would ask them what we could do to make it better.  We would offer our assistance.  Why then are we so hard on ourselves when it’s us? I have a chronic illness that affects my every day and then when I returned from vacation I got shingles and I shouldn’t be surprised my overall health and well being has been affected. When you live with a chronic illness like I do any disruption in the ordinary can wreak havoc on my body and my mind. Maybe there is no other reason why I disconnected. However, that nagging feeling of what next still has me on edge and I can honestly say at this point I don’t have an answer and instead of stepping forward into my discomfort I have stayed in limbo, in that place of disconnect, but now it’s time to emerge and start again.

A very dear friend sent me a message that said “That magic you are seeking, it is in the work you are avoiding.” That’s it, nothing else. She didn’t have to say anything else and she knew it. She knew exactly what she needed to say to nudge me forward. Ah yes our female friends. Our tribes.  The ones who point our way back to us when we have wandered off.  

I’m blessed with some amazing circles and I finally stepped outside again to join some of them last night for dinner. I came away-as I always do-feeling grounded, centered, stronger and ready.

This morning I woke up and I started my morning with the soundtrack from The Greatest Showman. If you have never listened to it you should. It is full of songs about empowerment and risks and stepping outside the box. You know what though? You can only embrace the risks if you are brave enough to embrace YOU. And that is the journey I am on. The journey to embracing who I am and owning it. I can fill myself full of “why would someone what to read what I write” and “why would someone choose to print my photos” or I can start by writing one sentence. I can start by editing one photo. Just one and that would be a step. I am new at all of this. I have never edited a photo but the great thing about digital photography is if you mess it up, you can undo your edits and go back start again. We can’t undo life, but we can always always start again.

To be a child again…

Today I saw a video of a little girl dancing on “glittery floors” in a mall and it reminded me of something I wrote in the beginning of March and I wanted to share it here…

Good morning, I’ve been very quiet on here, mostly because my days are not my own right now. I go from one task to another like a robot most days. I work, I go to the rehab to visit with my Father, I come home, I eat and I crash. On the days I don’t work I sleep them away trying to catch up on my rest. I did however have a lovely birthday last weekend. I thoroughly enjoyed our annual parade day for St Patrick’s Day. This little Irish lassy dressed in her plaid skirt and bonnet and waved at the marchers and the bagpipers and the fire trucks like a little girl, completely enthralled in the moment and I thought, we need to do this more often. Take off the cloak of adult responsibility and be like a child again letting ourselves just take it all in, uninhibited in our celebrations. When is the last time you watched a parade with child like enthusiasm? When is the last time you did anything with child like abandon not caring what the world around you thought? I can’t remember when the last time was that I enjoyed a parade so much. And it showed. Marchers were drawn to me, to wave and smile and shake my hand. The civil war enactors let off their rifles in front of us and the leader turned and said “that’s for you, the girl with pretty smile.” I especially loved the many different groups of bagpipers. They make such a sweet sound.

Child like wonder…I think that is why I love being Grandma, enjoying the littles from their level. My youngest grandchild Jakob tackles everything with a huge grin on his face. He looks at you with every new step as if to say “did you see that?” He goes like lightening from one side of the room to the other and pulls himself up on whatever is sturdy enough to hold him. He’ll be walking soon and then there will be no stopping him 💙. Life from his vantage point is exciting and new. I think we are all like an infant. Learning to crawl before we can walk. Learning to walk before we can run. Looking for something to pull ourselves up on that is strong enough to support us. So find your anchor, whatever that might be. Crawl to it if you have to and then pull yourself up. Stay there for a few minutes until you get your balance and then take a step, then another then another until you can walk away from all that holds you down. And smile at everyone around you and say “Did you see that? I knew I could do it!” And applaud yourself as loudly as you would applaud a child learning to walk. Because we all deserve a round of applause. We are doing it!!!!

How are you?

Hello lovely souls, how are you today? How many times are we asked this question and respond with “I’m good, how are you?” even when we are anything but good. Wouldn’t it be wonderful to own how we truly are and answer I’m tired today or I’m really feeling empty today or any other host of truths of how we really feel. That was one of my many reasons for joining Samantha’s workshops, to learn to own my truth. And my truth today is that I’m feeling frustrated but hopeful. Its a chilly day here in Upstate NY. My fireplace is on and glowing in the background with some soft music to soothe my soul. I have a glorious few hours to myself with coffee in hand and no agenda except meeting myself and all of you in this space.

First let me tell you a little about me. I am 53 years old, a mother of three amazing adult children-1 son 2 daughters-and 4 wonderful grandchildren-3 boys all belonging to my son and 1 girl who is my oldest daughter’s child-who are my greatest gift in this life. My son and his family and my youngest daughter live local but my older daughter recently relocated to CA for an AMAZING job offer and I miss her and my granddaughter so very much! Like most of you my life has been a series of twists and turns. In the early 90s I found myself to be a single mother raising 3 children to the very best of my ability and to say I did something right amongst enormous challenges would be an understatement because they are my greatest accomplishment. I met and fell in love with the man I thought would be my forever. I loved him with every ounce of my being. We were together for 16 years and in February of 2013 we were finally married and I could not have been a happier bride. On Feb 22nd 2014 we went to dinner for our 1st anniversary where we got married and he told me he didn’t think he wanted forever anymore. The room could have swallowed me whole. To say I broke would be a gross understatement. But I tried desperately to fix us, to fix what was broken. I tried to shrink myself so my presence wasn’t so difficult for him. I tried to give him room to breathe and figure it out but at the same time I wanted so badly to save us. On the Friday before Mother’s Day of that same year he came home and told me one of us had to go and it made more sense for it to be me. So I packed a small bag of clothes and I did what he wanted. I still believed we would somehow survive and so for months I lived with only that duffel bag of clothes because I couldn’t bear to remove my belongings. We didn’t survive and I never moved back home. I cried every day for a year. There were days I didn’t think I would survive. But I did. On May 6th, 2015, exactly one year from that fateful day that he came home and told me I had to go, I quietly took off my wedding rings and locked them away and took back my life. And here I am-almost 5 years later-stronger, I would like to think wiser, somewhat jaded, standing tall and proud as a survivor and no longer a victim! I’m in a good place now. I have a good man who loves me with his whole being and I’m grateful for him and his love.

Fast forward to 2018. It was a roller coaster of a year and so emotional for me. October was a particularly hard month. I spent much of it ill and it left me feeling depleted, lost, empty, guilty and inadequate both in my work and at home. I felt surrounded by negativity, mostly my own self-loathing that I piled on myself. I ended October of last year at a beautiful reiki session with a dear friend who shared with me that it was time for me embrace embrace embrace. And so now I have come to carve out space for myself and find my way back to my center. After years of being told all the things I am too much of to stop apologizing. To stop feeling like I am too much of anything and to embrace, really fully embrace, the loving sensitive emotional soul that I am. That’s the short version of my story.

I have not settled into 2019 yet. I’m still floating through my days trying to find my footing. Things have been a little bit of an uproar in my little corner of the world. Lots of thrashing and fighting and unrest inside myself. I know what I want for 2019 but haven’t found my path yet. I have barely had time to recover from the busyness and excitement of the 2018 Holidays before illness struck me and then some other stuff came at me. I tore my meniscus and that derailed me for a time. I took a glorious 2 week vacation to CA and I thought I would FINALLY turn that corner. And then this morning I was diagnosed with shingles. Detailed again. I’m tired. I’m very very tired. I feel like I’m in a fog. So I haven’t fully embraced the power within myself as of yet, but I will, and this blog is going to help me find it. I know it’s there. I know I need only to tap into it. I know I just need to dig a little deeper. But first, I just need to rest. Peace and love to all

The Ocean-written on 3.17.19

I have never been to California.  I would most likely have never come to this amazingly beautiful place if my daughter had not accepted an incredible job offer and subsequently relocated her family here.  But today I am blessed to be writing this in my daughters living room after a wonderful day at the beach!  I love the ocean.  The ocean is my happy place, the place I can renew and refresh my soul.  I never really grasped how different the Atlantic coastline was from the Pacific. On the East Coast it is miles of sandy beaches for as far as you can see.  Here in CA the beaches are a blend of sand and rock and bluffs that all combine for an absolutely stunning affect.  One of my new found passions is photography. Today I walked the beach for a very long way and I took so many photos with my Canon Rebel trying so hard to freeze the moment and capture the beauty I was seeing.  At one point though I put my camera down and I sat on a rock and I just soaked it all in.  The ocean, with it’s rolling waves and crests breaking over the rocks, is so powerful.  When I stand on the beach I fully grasp the magnitude of our universe and my small place in it.  When you stand in the surf and the waves come and knock you over it takes a minute to catch your footing and stand back up until the next wave hits.  Sometimes the waves come in so rapidly you don’t even have time to catch your footing and you have to really struggle to stand back up.  Life is like that.  Moments come in waves.  Some of them knock us off our feet and we have to scramble to catch ourselves before the next wave.  Sometimes we can and then sometimes we can’t.  It would be so easy to just sit down and let the tide carry us away when we are tired of fighting the waves.  But we can’t.  We have to stand back up, again and again and again.  But each time we stand, we become more prepared for the next wave.  And that’s how we withstand the things that come at us, by becoming stronger, by being more prepared.  Self care, this thing we are all struggling to learn, that prepares us.  Only when we take care of ourselves are we in a place to face what comes at us, whether it be a small swell or a tsunami that wrecks our world.  I needed this time away from home, away from the rehab facility and my biological Fathers new blindness (which is another story), away from work and going non stop. I needed this time here in this beautiful place with my daughter and my granddaughter.  I needed to take this time for myself,  to get in touch with me.  To find my calm in all the chaos.  And for me~and my empathic Pisces soul~that is found at the beach.  I have 8 more days here.  I will be finding time to go back the beach, not with a camera this time but with a notebook.   My family~my children and my grandchildren~they are my reason for everything.  They are my anchors.  This trip has been the best gift I gave myself.  I have been able to bond with Maya in a new way.  Today was my little leprechauns 3rd Birthday and to be here and to spend it with her was a blessing of epic proportions.  My week has been filled with days at the park, and snuggling to watch movies, and bedtime stories and songs while I stroke her pretty hair.  She lays her head in my lap and my heart just swells.  When you are a Mom you think you could never love a child more than your own, and then you become a Grandma and you do.  You have a whole new dynamic where your job is just to love them.  There have been a couple times over the course of the week where Maya has had an emotional meltdown typical of a 3 yr old and man is it hard to watch her cry.  It’s hard to hear her say “but Daddy please, please Daddy”-and being a good parent means Daddy says no and doesn’t budge.  I don’t interfere.  I don’t have to interfere.  My daughter and her husband are amazing parents so interfering doesn’t even enter my mind.  And when all is said and done and she needs someone to come and cry to, I will hold her and wipe her tears.  That’s my only job as Grandma. . And being G is pretty stinking awesome if you ask me.