Chronic Illness Changes Your Relationship with Death

When you’re chronically ill you have an intimate understanding of how fragile the human body is because you live with it every minute of every day.  It doesn’t matter if you’ve been sick for months or years, you’ve lost your health and with it has gone the carefree days of never considering your body in your day to day life. In fact, your life is quite the opposite, your body makes all your decisions for you, whether you get out of bed, whether you eat, whether you work, or even see friends and family.  This hyper-awareness of just how vital and easily lost health can be; makes the thin line between life and death something we know as well as our own name.

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For most healthy people death lives in another country.  It’s far away, a foreign concept that they only really think about on the rare occasion that it comes to visit their area in the form of someone close dying, getting a dangerous disease, or a fatal accident.   For me, with a chronic illness, death is usually a polite housemate.  I live with him every day, I always know he is there, but he does his dishes, cleans up after himself and is for the most part pretty quiet.  Lately, however, his manners have deteriorated, he’s leaving dishes in the sink, hogging the remote, and waking me up at night with loud parties.  Chronic illness is like this sometimes, it goes through phases of maintenance and then it goes sideways.  I’m in a sideways phase.

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Not this again!

You see, I have dysautonamia, among other things, and it affects things like body temperature regulation and my heart.  Right now my heart is all over the place.  Usually, my problem is very low blood pressure and I also have POTS, but right now my blood pressure and my pulse have been running both really high and really low to such extremes that my cardiologist has decided to run tests that were run just one year ago.  The first was wearing a heart monitor, which I’ve already done and the next is a chemical stress test, which is highly unpleasant. Last time they came out slightly abnormal, now, of course, they are looking to see if anything changed.  In the mean time, I have to say that having your heart constantly on Mr. Toad’s wild ride is beyond exhausting.  I really feel like my body and I are completely disconnected and I know intellectually that having trouble with the heart is a very dangerous thing.  This is on top of all the other symptoms my body fights with on a daily basis.  So, it’s got me thinking, but not in the way you might think.

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Living with chronic illness and the awareness of your own mortality gives you a clearer perspective on life.  You’re aware that life is fragile and precious, that your time is limited and how you spend it is extremely important.  As you begin to accept these facts you start making more careful decisions with your life.  You pick and choose who and what you spend your time on.  You’re more mindful with your words and your actions.  You really appreciate the small moments of joy that appear in your life.  You treasure the small acts of kindness that the people in your life take time out of theirs to do for you.  We know better than to leave loving words unsaid or leave a situation angry.  Chronic illness isn’t exactly a gift, but it does provide a certain kind of awakened perspective that allows us to live more in the moment than the average person.  That is a gift.

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I know that I make choices every day that enrich my life.  I’m very careful about whom I spend my time with and more importantly who is in my life.  Even if I’m not feeling entirely well I always make the effort to spend time with my family.  Everyone I love knows how much they mean to me…in detail.  I make great efforts to still travel and go to concerts when I can so I still have joy in my life. “I love you,” is a phrase I speak often with no need for reciprocastion, greetings and goodbye’s with everyone even with family that I share a house with.  Living with chronic illness is a hard road, but it has allowed me to live a more present, compassionate, and mindful life. So that, should that line between life and death blur from one minute to the next, I will have no regrets.  For that, I am grateful.

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Posted in humor | 8 Comments

Be Our Guest: Nobody Said It Was Easy

May is national neurofibromatosis (NF) month! What’s that? You ask.  Well, that is why it is really important we take note and learn about this devastating disease.  A friend of mine, who I have know since she was in diapers, I’m a little older, sadly has a son with this diagnosis.  However, my dear friend, Melanie Rickmann is a fighter and she wants to share her experience and help educate everyone about neurofibromatosis (NF) so that even with little known disease others will know they are not alone. Take it away Melanie!

Thank you Kristen for the opportunity to do a guest post on your blog. I am honored to be writing here and sharing my story in hopes of spreading some knowledge for NF Awareness month.

Nobody Said It Was Easy

You know those moments as a parent that you will just never forget? Some of those are wonderful moments, like when your baby is born, the first time they crawl, talk, or walk. The first time they say “I love you”. Those are the moments when parenting is a gift. But then, there are moments that aren’t such a gift. Moments when your world crumbles all around you. Moments you don’t think you will ever recover from. Sometimes these moments are more than just an instant and can drag on for years.

The moment I want to share with you started in the fall of 2012, after my son Sebastian’s 3 year check-up. His new pediatrician noticed his numerous café au lait spots and the freckling in his groin, both of which are signs of the genetic disorder called Neurofibromatosis type 1 (NF1). We were familiar with doctors telling us there might be something wrong with our child, as we’d heard that when he was a baby and his growth slowed down. But this time it was different, someone had a word for what might be wrong with him. For some reason that word made the pieces of my world begin to crumble.

I put up a large wall of denial to keep my world intact for the next several months. Each new specialist we visited, each research session we spent trolling google for articles about this disorder, each moment we looked at our boy with this fear in mind, another piece would fall away. By the time we received his DNA results in February of 2013, my world was a bit of a mess. Like an old, unsafe building headed into an earthquake, I called the geneticst’s office to hear the results. I already knew what the results would be, you’d think I would’ve been more prepared to hear them, but I was too unstable to be prepared.

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How could I be prepared?  This is my child!

I stepped into the hallway outside my office at work to make the phone call. The genetic counselor answered the phone, I waited impatiently while she looked through her files, pacing back and forth in the hallway, wishing I had a better place to make this phone call. “Ah here it is, oh yes, the test showed he has a mutation on his NF1 gene.” A loud ringing in my ears started, sudden dizziness crept up, I sat down on a bench to keep from stumbling. A lump formed in my throat, full of tears and screams of anger. After that sentence, she said more words in a reassuring tone of voice, places I can go for more information, who I can call to join a support group, things I wish I’d been able to hear. All of my efforts went to keep the lump in my throat where it was as I thanked her and got off the call as quickly as I could, totally unsure of what else she’d said. I stood up slowly and walked calmly to the bathroom, which was thankfully empty. I locked myself in the handicapped stall where I broke down. I don’t know how long I was in there crying. It didn’t matter, nothing mattered. My world had shattered.

Would Sebastian be okay? Would he get really sick? Would I be able to handle it if he did? Or would I lose it like I was losing it now? I just kept thinking, I’m not strong enough for this. I’m not a good enough parent. I’m a wreck.

That moment was long. It was the beginning of the depression stage of my grief and it lasted for years. After many more doctors and evaluations, the consensus was that Sebastian was fine, great actually for a kid with NF1. But still if I think too much about what could happen, I’m left with the feeling of utter helplessness. Nothing makes me feel more helpless as a parent than NF does. Raising a child isn’t easy, nobody said it would be. But raising a child with a diagnosis like NF is an intense roller coaster of emotions, nowhere close to easy. Sometimes I feel okay about it, since his issues so far have been mild. I’m inclined to push it from my mind and not think about it, not worry over it so much. He’s fine. He’s going to stay that way. Right?

 

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He is a happy, so far healthy, and beautiful boy, I just don’t want that to change.

The most frustrating part about this, is no one can answer this question, will my son be okay? Will this be a mild hindrance in his life or will it cause him pain and suffering? No one knows. There has not been enough research for anyone to be able to answer my very simple question. The best I’ve found in all my research is “most cases are mild to moderate.” What’s their definition of “moderate” and “most”? That doesn’t instill a lot of confidence.

So what might happen to him? What is NF1 exactly? The NF1 gene is one of the genes responsible for suppressing tumor growth. So a mutation on the NF1 gene allows tumors to grow on nervous tissue throughout the body. Tumors sometimes form on the optic nerve, causing blindness, or in the brain or spine causing a host of other problems. In addition, NF1 can cause deformation of bones, like scoliosis and tibial dysplasia, behavioral disorders like autism, seizures, an increased risk of cancer, and more. NF varies greatly from one case to the next, even within families. There is no way to predict how serious it will be, no known way to prevent it, and no cure. Treatment only includes managing symptoms and removing tumors if they become a problem. It is a life-long, progressive disease, meaning it will only get worse as he ages.

 

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How common is NF? NF happens to 1 in 3,000 births, making it rare, but more common than other diseases you’ve actually heard of like cystic fibrosis, muscular dystrophy, and Huntington’s Disease combined. About half of NF cases are inherited, but the other half are new mutations, as is the case with Sebastian. They have no clue what causes these spontaneous mutations, another reason this needs to be researched more. Maybe they would be able to figure that out, and help prevent millions more from having to deal with this. Not to mention the millions of cancer patience who would benefit from NF research, since a lot of it has to do with suppressing tumor growth.

Research would also benefit many more who will inherit this disease. If one parent has NF, there’s a 50% chance they’ll pass it on to their child. That means someday Sebastian will be faced with a hard choice when deciding if he wants to have children of his own. My heart breaks at that thought. But then I think, if I had somehow known that my baby would end up with NF, would it have kept me from having him? Even given all the knowledge I now have about how bad it might be for him? Of course not. Sebastian is an incredibly special human being. As much as I don’t want to see him suffer, I couldn’t possibly deny myself and the world the experience of having him in it. He is an amazingly happy, social, accepting, and loving little 6 year old and I’m grateful for him, and this difficult NF journey, every day.

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I’m so grateful for my whole family.

So in light of NF Awareness month, I hope you’ll spend a second to spread the word. Share this or any other NF info you find. The Children’s Tumor Foundation (http://ctf.org), the only major nonprofit dedicated to NF research, puts on many charity events to spread awareness every year. One of those is the NF Walk, which will be in Portland on July 24th. If you’re in the area and would like to come out and help us spread awareness, you can go here http://nfwalk.org/portland and join Team Sebastian. If you’d like to make a donation, you can do that here https://join.ctf.org/fundraise/team?ftid=75933. Donations are doubled during the month of May, so now is a great time to donate if you’re considering it. If you’d like to read more about our journey, you can do that on my blog at https://melsemptyjournal.blogspot.com/.

 

sebastiannfshirt

Posted in anger, anxiety, Chronic Illness, conditions and diseases, grief, helping, humor, neurofibromatosis (NF), understanding | Tagged , , , , | Leave a comment

Why People with Chronic Illness Rarely Take Your Advice Well

People with a chronic illness live with their illness like Olympic athletes live and breathe their events day in and day out.  Except for one major detail, we didn’t choose to be chronically ill and we don’t love it.  We do, however, know it inside and out, think about it, deal with it,and  manage it, every single minute of every day of our lives.  We know our bodies, we know our illness, we have tried all kinds of treatments from the expected to treatments you have never heard of and neither had we until we were faced with trying to survive this illness.

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We are trying, it just doesn’t always work out well.

So, when I mention that I am struggling, with pain, fatigue, I’m having seizures, or can’t seem to control my hands this week and your response to my struggles is to mention that maybe yoga, or lyrica, or a cortisone shot, or vitamins, or a diet, or whatever it is you recently  heard or read could help with whatever random symptom and my response to you is less than enthusiastic.  Let’s be honest, I want to tear your head off…and I’m not alone.  This is the general feeling about advice when the chronically ill are struggling through a particularly rough time.  Mind you, this isn’t because we are total jerks and don’t understand the fact that you are trying, in your own way, to help.  We know that; it’s the reason your head is still attached to your shoulders.  The problem is that it’s not only not what we need, but, for us, it also comes with a lot of negative connotations.

Here are  5  ways I can take your well-intentioned comment negatively.

Me, “My pain has been really high this week. I’m having a hard time dealing.”

You, “Have you tried yoga? I have a friend that does yoga every day and it really helps her pain level.”

  1. I hear you suggesting that I’m not trying hard enough to manage my condition.  That I could be doing better.
  2. I hear you suggesting that I haven’t done enough research to already know about yoga, which I assure you, anything you just read about I learned about and tried twenty miles back.
  3. I hear you suggesting that I’m not intelligent enough to have figured out something so very basic.
  4. I hear you suggesting that I’m not doing everything in my power to get better when that is all I’m doing.
  5. I hear loud and clear that you don’t understand my situation and now I not only feel in pain and miserable, but I feel lonely because we have experienced a disconnect.

I’m fully aware that most of those are absolutely my baggage and you really weren’t saying or suggesting any of it.  I know you meant well and I can logic it out on all of those except the last one.  We have, in fact, experienced a disconnect.  I wasn’t looking for advice, if I was I would ask for it.  I was looking for kindness and support.  Unfortunately, our society doesn’t teach us how to deal with long-term illness and suffering.  We don’t know how to sit with someone else’s pain and just hold space for them.  We want to move, to fix it, to make it better, to do something, that is what we have been taught.  It’s wrong.  With chronic illness, we need you to sit with our pain and accept it thereby accepting us.  I understand that people love me and want me to feel better, but really, it’s not in the cards.  So asking me if I’m better makes me feel like I’m disappointing you.  There is nothing I can ever do to make many of my illnesses better.  They will, instead, deteriorate with age.  I have come to accept this, and all I want is my loved ones to accept me as I am.

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The kittens have no problem.

So instead of trying to “help” or “fix it,” here are some very welcomed responses when we are struggling.

  1.  I’m sorry you’re… “hurting,” “having a tough time,” “going through this.”
  2. I love you and I’m here for you.
  3. Is there anything I can do for you? I’m going to the grocery store, do you need anything?
  4. I’m sending lots of hugs.  Do you want to talk?
  5. You’re so brave, I don’t know how you do it.

These statements are of love and support, it can be hard to just sit with someone who is suffering, but there really isn’t anything to do but love them.  Honestly, that’s all I ever want when I’m really suffering.  To know I’m loved and supported and if I suddenly need a ride to the ER I’ve got one.  It’s not a tall list of needs, considering I may be staring down grande mal seizures or debilitating nerve pain or a loss of hand coordination or vertebrae that are crushing major nerves and my spinal cord or a heart that doesn’t beat well enough to get blood to my brain, etc.  My loved ones can’t fix any of that, not even my doctors can fix a lot of it, but they can sit with me and support and love me as I endure it.

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Posted in anger, anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, depression, disability, fibromyalgia, friends, friendship, health, helping, hope, lupus, mystery diagnosis, Mystery Illness, pain management, rheumatoid arthitis, struggles, suicide, understanding | Tagged , , , , , , , , , , , , , , , , | 6 Comments

You Are Not Alone

When you realize that the life you once knew is lost, all your hopes and dreams are shattered and everything you worked so hard to achieve has slipped through your fingers-You are not alone.

When you want to give up because each day is filled with such excruciating pain that there isn’t room for anything else and you realize that not only is this not living, but it’s also not surviving.  It’s just suffering and you can’t imagine continuing this existence for a lifetime-You are not alone.

When you want to scream because doctors are dismissive and disinterested in your symptoms, even though it’s their job AND you’re paying them a lot of money to help manage your chronic illness-You are not alone.

When you stop opening your mail because your medical bills have piled so high that you are afraid to even look at how much further you’ve fallen into debt-You are not alone.

When getting out of bed is just not an option and even though you logically know that you didn’t have a choice in the situation, shame and guilt shares your bed the rest of the day-You are not alone.

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When you had to cancel plans with friends or family, again, and logically you know it’s the right choice for your body, mentally you feel guilty for cancelling, worried they won’t understand or believe you, worried they’ll stop inviting you out, worried you inadvertently hurt them, shame for not overcoming your body once again, grief for a time when you never had to cancel, and lonely knowing you are home feeling rotten when, if life were different, you could be out with loved ones-You are not alone.

When you do brave going out with your loved ones, but your body quits on you part way through putting you in an embarrassing situation while you struggle to get back home only to arrive home grateful to have made it but completely humiliated-You are not alone.

When you realize that the limitations and stresses your chronic illness has brought to your life have created the constant companions of fear, anxiety, and depression-You are not alone.

When strangers and loved ones speak thoughtless and ignorant words about your illness (often without even realizing it) that really cut right to your core-You are not alone.

When your friends and family don’t understand or sometimes don’t even believe your illness and turn their back or even walk out of your life and leave you heart broken with a devastating chronic illness-You are not alone.

When even those who stay, who really love you, who really want to help and try very hard to understand your situation, unfortunately unless you have lived chronic illness it’s impossible to truly grasp. This inevitably leaves you feeling isolated and lonely in spite of all their efforts-You are not alone.

You are not alone, because I am right here along with countless others struggling through the same trials that accompany chronic illness.  We want to share our experiences and as a community, our support, so no one has to suffer alone.  So look no further, because as of right now-You are not alone.

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What about you? What is your story and how would you help someone else with chronic illness?

Posted in anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, confused, coping, depression, disability, fear, fibromyalgia, friends, friendship, health, humor, pain management, rheumatoid arthitis, struggles, suicide | 11 Comments

Facing Death

I’m not the only one in my world dealing with severe illness.  Sometimes I’m the one on the outside, powerless to help, wishing for a cure, dreaming of an imaginary world in which someone I loved wasn’t suffering.  It’s heartbreaking.  Every single day my mind is consumed with thoughts of what I can do, how I can help, what he is going through.  The problem is, I know from experience that there really isn’t anything I can do.  I really don’t have any power to help, all I have is my love for him and in that is all of my power.

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My friend Scotty has terminal cancer.  Though he did everything right, he fought tooth and nail, struggled through all of the treatments and all of the surgeries they just didn’t work.  It’s not fair and it’s not right, but here we are and we all know that his time is near.  What do you do with that?  How do you help or show how much you love someone facing death?  It’s not something our culture really teaches us how to deal with.

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To really understand my struggle let me give you an idea of the kind of man Scotty is.  I met him when I was a teenager, which was many years ago and  in all that time he has never done anything to hurt me.  He has always been this bundle of energy and humor wrapped up in a big mischievous smile and bright red curly hair.  Although most of the time he wants to play whenever you need to talk he is there and he always has your back.  I have never seen someone get so angry on my behalf when someone else caused my tears.  Scotty is honest, he’s not afraid to tell you what he thinks and you never have to wonder where you stand.  That’s not a bad thing because he loves so completely that where you stand is always by his side.  He has always given the greatest hugs, nice and strong and tight and he is one of the few people that I have fallen asleep in his arms, safe and warm.  He is a dear and wonderful friend and human being.  Plus he is a fantastic cook!

My beautiful picture

Old Picture Scotty on my left

I try to imagine what he must be going through.  I imagine that this must all be so overwhelming.  I know that he feels miserable, that his body has betrayed him and it’s shutting down on him.  I know from my experience that there are a lot of emotions that go along with your own body turning on you.  I know that I’ve experienced a lot of anger, sadness, and grief, and I wonder what that must be like for him when facing death.  I know that he has faced this whole experience like a hero.  That he has kept a positive attitude throughout the whole thing…at least for the public face.  I imagine he has had some struggles privately, but who wouldn’t?  Since he is such an amazing person and everybody knows it, he has had incredible support from so many people.  Hundreds of people following his saga, cheering him on, offering help and support, and most importantly, love.  It really shows how much Scotty has touched the world.  Though I do wonder sometimes if even that has been overwhelming for him at times.  When you’re sick everything just seems like too much.  Though I know that he realizes this outpouring of love is what he has created throughout his life returning to him in his time of need.

My beautiful picture

Same event about ten years later

In the true Scotty fashion, I know that he is worried about all those he is leaving behind.  I want him to know that we are going to miss him every single day for the rest of our lives.  That’s as it should be.  We will be sad, but we also have so very many incredibly happy memories to hold you in our hearts forever.  You are leaving a legacy like no other and each and every one of us is privileged and honored to have shared our lives with you.  We love you, deeply, truly, unconditionally, forever.  I know that you have inspired me to live and love completely and I will always have your voice in my head urging me to love bigger, speak my mind more freely, and get into a little mischief.  Thank you, Scotty, for your friendship, love, humor, hugs, fun, and honest conversations.

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Friends are the best.

Scotty has one final wish and unsurprisingly, it’s not for him, it’s for his wife.  He is worried about her making ends meet when his income stops.  He wants to have a fund for her to draw from to cover his side of the bills so she isn’t upside down and grieving.  Many of his friends have already stepped up, but the goal has yet to be reached.  Please, this is an amazing cause for a really incredible person and it’s not even for him, but it is his final wish.  Every little bit helps, if you can help, please do.  All of us who love him, truly thank you.

Please View and/or Donate to this Great Cause By Clicking Here!!!!!!!!!

 

Posted in anxiety, cancer, caring, Chronic Illness, compassion, conditions and diseases, death, grief, health, humor, struggles, understanding | Tagged , , , , , | Leave a comment

Let’s Talk About Friendship

When I first got sick I received a hard and fast lesson on the people in my life who were actually fair weather friends.  My vast and varied social life quickly dwindled down to a small handful of people that stood by me even though “I had changed.” In a way they were right, I did change, my whole life was turned upside down in a very traumatic way.  There was no way to survive that without changing.  When the chronic pain first began, just like everyone else, I expected to get better and get on with my life, but as the days turned into months and the months into years it became glaringly apparent that a cure just wasn’t in the cards.  There was a lot of heartbreak involved in this realization.  Though I fought long and hard to keep the life I had worked long and hard to achieve my body failed me and mentally this was immensely hard to absorb.  Equally hard to absorb was the loss of the people in my life who I believed were real friends, but instead lashed out at me.  They blamed me for my illness, they criticized me for how I coped, judged me for things they didn’t understand, and having done their damage, walked away.  I now know this is a very common experience, at the time I was both devastated and confused.

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That was about a decade ago, some wounds leave deep scars.  I have since been very careful as to who I consider a friend, who I let into my life, who I spend time on, and especially who I trust.  Though I write very candidly in this blog, I don’t tend to talk about my illness with anyone.  I’m sick, I know it, they know it, if they want to know the details they can ask directly or read about it here.  I don’t want to be the one who talks about their health or their problems all the time. I don’t want to be a burden or a bummer.  Even if I’m suffering I try to have fun and be good company.  I work hard to be a good friend.  I’m there whenever I can be.  If they needed something I would move mountains to make it happen.  I may be stuck on the couch, but I’ve learned to be creative.  I make the time and effort to see them, which is even more of a challenge now that I had to move far away.  I try to keep in contact, but distance makes it hard.  I do whatever I can to make their lives more pleasant.  It’s a challenge sometimes, but I do my best to be kind, supportive, empathetic, and helpful to the people who are important in my life.  While I don’t expect the same kind of effort in return, love isn’t about keeping a ledger of who did what, I also don’t believe that my illness gives anyone the right to treat me poorly.

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I Try To Make Life Happier.

Unfortunately, I’ve had some recent experiences that have made me wonder what makes friendship real and what friendship is worth.  When I was talking about this with someone they said something very poignant.  When it comes to the behavior of friends you have to decide if what they have done is a pain in the ass or a stab in the heart.  If you can move what has occurred to a pain in the ass then you can move on with your relationship and eventually get over it, but if what occurred really has hit you where you live maybe it’s time to just move on.  When you are chronically ill you are always a little worried that you are being over sensitive, that you are over reacting, or there is a misunderstanding.  I’m fully aware that dealing with my illness takes a little more understanding and compassion, but it’s no excuse for bad behavior and that is what I seem to be running into.

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There shouldn’t be a difference between how I am treated and how their other friends are treated.

Even though I don’t talk about my illness I’m still subject to its limitations.  A few recent experiences made me start to wonder if the people in my life really do understand that these limitations are not my choice.  One I seem to run into a lot is that I walk slowly.  I’m not meandering and taking in the sights, that is the speed that I can walk.  If I walk faster my disability becomes very blatant in my gait (which I’m too embarrassed to let anyone see) and I will only make it a short distance and then will not be able to walk anymore.  I will also end up in a lot of pain and will have to recover for who knows how long.  However, if I walk at a slow steady pace I can walk for a little while.  Yet it seems like slowing down enough so I can keep up is quite an inconvenience.  Which to me doesn’t seem right, I would happily slow my pace for a friend knowing they didn’t have a choice, I’ve done it for years for my Mom. Yet, people walk away from me all the time and there isn’t a damn thing I can do about it.  Sometimes they realize they’ve left me behind and stop and wait until I catch up only to walk off again.  Have you ever been walked away from?  It sucks.  It always makes me want to go home and makes me very cautious about going anywhere with these people again.

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Another limitation is activity.  I used to be very active, but now every action has a cost and I pay in pain.  Not only that, but I have extremely limited energy.  So, what a healthy person might consider no activity is actually costing me every minute.  I can do things like go to a concert, a movie, a small gathering, out to dinner, or hang out at someone’s house, but I have to mentally and physically prepare for it ahead of time and I pay for it afterward.  It would be like a healthy person getting ready for a 48-hour ordeal and then recovering afterward.  Again, it’s not a choice, it won’t change if I try harder, get more exercise, sleep more, whatever, the only result if I push too hard is I end up sick for months.  Yet, I recently had some friends tell me that our activities, or rather lack thereof, were destructive to their lives, therefore, they decided to cut me out of their lives.  Mind you they didn’t tell me as much until I directly asked.  They clearly aren’t friends and that’s over, but it really frustrated me that they didn’t just tell me.  Again, what I’m seeing is a lack of understanding of the facts of my situation.  I got the feeling from these unkind people that they believed if I tried harder I could go out and do whatever I wanted.  That they had it in their heads that my “need” to stick to low-key activity was a form of laziness and that they tried to include me in a few activities and because I refused they ended the relationship.  I can’t control what other people will or won’t believe.  I try my best to educate the people in my life.  I explained my situation and pointed them to a few key articles on this blog and they said they got it, but that clearly was not the case.  Though it was certainly a painful experience I’m glad they are gone, but I wish that people would just freaking communicate.  When did talking go out of style?  And why didn’t I get the memo?

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Destructive? Are you kidding me?

I don’t tend to ask for help. I try to organize my life in such a way that I can manage everything on my own.  I fully admit I am stoic, independent, and stubborn.  However, I do accept help when it is offered in small ways such as lifting something heavy or offering me food or drink when I’m too exhausted to get it myself.  I would hope that my friends would help me because it’s a nice thing to do. There shouldn’t be a ledger in any relationship keeping track of who did what when and whose turn it is to do something nice.  Real love and kindness are done for kindness sake.  The reward is that it feels good to do something nice for another human being.  If you are doing something nice looking for something in return then your heart is in the wrong place. Chances are, instead of doing good all you are going to do is build resentment because the other person doesn’t know that you are keeping a tally.  If you don’t want to do something then don’t.  It’s that simple.  Like I said, I don’t tend to ask for help and it is rare I get myself into a situation that I can’t handle myself.  If I, or someone in your life with a chronic illness, does ask for help and you give it, but you want or need something in return that you aren’t receiving, then communicate as much.  Chances are excellent that they just don’t realize what you need and will happily give it. We aren’t monsters, we are suffering, it makes it hard to be observant, we will be very glad of some straightforward help on what you need from us.

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Communication is vitally important for everyone when you are chronically ill.  Sometimes we feel a bit crazy, we don’t understand why people are treating us a certain way and we have already been so damaged by our so called loved ones that we suffer PTSD.  We need direct communication, we need to be told what is going on and why. Even if it is something we are doing, just being told in a calm, kind manner, so the problem can just be fixed will make all the difference in our confidence in the relationship.  Being passive aggressive, being snappish, being grumpy and then denying it, yelling or the silent treatment are all going to do so much more damage than it would to a normal person.  Why?  Because chances are you’re frustrated with us because of something to do with our illness and that is a giant throbbing red button.  We did or didn’t do something and you’re mad or you’re helping and we aren’t appropriately grateful or you miss the old us.  Well so do we! Damn it!  We are every bit as frustrated as you with the whole situation. Plus a million, plus a ton of doctors who mistreat us and pills that make us feel rotten, not to mention this freaking illness that has torn every shred of our lives to pieces.  So if you love us at all, just talk to us, we are absolutely willing to work with you, but we can’t read your minds.

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The smallest things have the greatest impact.

Our friends are important to us, but we often feel like we aren’t understood.  We know that you try and that this is hard on everyone.  All we’re asking for is some compassion and some communication.  We don’t want any special treatment. We just want some common courtesy and some kindness.  I don’t feel like I’m asking for too much, but lately, it appears to be a big ask.  I don’t understand why.  I do the same for my friends in different ways without expecting anything in return.  I just like seeing them happy.  But I have to wonder, does that really go both ways?

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Or is it just me.

 

Posted in chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, confused, coping, depression, family, friends, friendship, health, helping, invisible illness, Medicine, pain management, struggles, understanding | 6 Comments

I Visited Normality for a Few Days, What I Learned is Shockcing

Suddenly, for no reason at all my body decided to act normal for a brief moment in time and the experience was eye-opening.  Unfortunately, my foray into the normal world wasn’t a walk on the pain-free side.  Instead, I experienced three days in which I believe I had closer to normal energy levels. It was the strangest experience.  I just woke up one morning and getting out of bed wasn’t this giant effort.  I was able to take a shower without it completely destroying me.  I was actually confused by these events.  Normally my body feels like it weighs thousands of pounds.  Every movement, the short walk from my bed to the couch is a monumental effort.  Spending the day on the couch isn’t a choice, this isn’t my idea of a good time, it’s my only option.  Every little thing is so terribly difficult that I have to give myself a pep talk to just sit up, then another to stand, finally another to accomplish whatever minor task I have in mind.  That is my normal and it has been that way so long that I forgot that life was ever any other way.  Then along came these three days.

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I felt like I could conquer the world!

No pep talks needed, I just did whatever I wanted.  My pain level wasn’t affected, so I was still limited in my activities.  Sadly, no skydiving this time.  I also had to be mindful to not overdo it and increase my pain level.  However, as I lay on the couch I was restless and frustrated!  I wanted to move, to get up and do things.  I suddenly realized that this was how normal people felt all the time.  That doing things was easier for them than holding still.  No wonder people are so confused by my complete and total exhaustion.  Just as I’m stymied by their seemingly endless energy.

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We just don’t understand each other.

Still for three days I walked in those shoes and by pure chance, we had parties to attend each night.  I was able to go to all of them, whereas I would have normally been forced to bow out of one or two.  I didn’t spend all day talking myself into going and working up my mental courage.  In fact, I was restless all day, but mindful of my pain levels, so I waited until it was time to go out.  It was a long wait.  In contrast, there is usually some amount of dread to going out and the time always goes too fast.  I had fun each night, I didn’t tire out a couple hours in and spend the rest of the night waiting for one of my companions to be done.  I was more talkative, more opinionated, and laughed more easily.  Usually just physically being there was my best effort, so I often sit back and watch everyone else.  Of course, sitting for several hours three nights in a row did a number on my back pain.  Each day that pain number ratcheted up a bit, but the energy remained.

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It was a new and welcomed experience.

During the days I still wanted to accomplish things, to continue to move, but used will power and logic to remain mostly still.  I very slowly and carefully enjoyed some yoga, which was a totally different experience when my body was so eager to move.  Normal people live in a completely different world than I do.  I have lived with this extreme fatigue for so long that I completely forgot what energy actually felt like.  I forgot that most people don’t dread the smallest of activities, that they experience restlessness if they don’t move around enough on a regular basis.  That it actually feels good to move for them instead of something that makes you miserable both physically and emotionally.  Maybe all of this seems so obvious, but we all get so caught up in our own lives that we rarely stop to consider what life is like for someone else.  I have no idea where those days came from or why, but they left as suddenly as they came and, as usual, I paid for it in spades.  Still, I wouldn’t give up my walk on the normal side.

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Posted in anxiety, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, confused, coping, health, invisible illness, pain management, struggles | 2 Comments