What does it mean to live?

Now I’m not asking what it means to be alive.  Then we would get into arguments about plants, fetuses, the whole Terry Schiavo thing, and even the argument about the potential for life being enough.  This discussion is going to be esoteric enough without jumping down that particular rabbit whole.  I want to know what it means to us as human beings to live as opposed to merely surviving.  This is important because this is a questions that people who are chronically ill and in pain ask themselves on a regular basis.

What does living mean?

What does living mean?

Still living is hard to define because it means something different to everyone.  Some people live with a bunch of books or video games, while others can’t imagine life without dance clubs and big parties, or others live to explore mountain tops and vast oceans.  No one is wrong or right in how they choose to live, but what if that choice was taken from you?  I was a mountain tops, oceans, motorcycles, dancing, travel, endless adventure kind of girl, until I got sick.  Now my life revolves around medications, my bed, my couch, and endless doctors appointments.  When I do brave a social situation I listen to other people talking and I can no longer relate.  Other people talk about work stress, their latest adventures with friends and family, their plans for travel, their relationships, and general gossip.  I know that for a while I had a life like that, but I remember it in the way that we as adults remember childhood.  We know we spent many years with no worries, nothing to do but play and maybe go to school.  However, at the time that was all we knew and we didn’t understand that it would one day end. So we didn’t know to appreciate it. The same thing happened with my health.  I had no idea it would suddenly go away and so I didn’t appreciate what I had.  Now I don’t actually remember what it’s like to not be in pain.  Intellectually I remember a time when my worries revolved around doing my job well, paying my bills, keeping the house clean, keeping food in the house, keeping up with the laundry, maintaining my social obligations, having all the fun I could manage and sometimes getting some sleep.  Sadly that memory is just as far away as my days in preschool.  I know it happened, but I can’t touch it.

My old life

My old life

So now my life of places to rest with ice packs and heating pads, medication doses, countless doctors and painful treatments has me wondering, is this living?  Is placing one foot in front of the next, day after day really a life?  My answer is a resounding, “NO.” This is not a life, this is just surviving.  I breathe in and out, my heart beats, and I go through the motions.  The things that made my world worth living in have been stolen.  One foot in front of the next.  When I first got sick it was easy to fight because I believed that we just needed to figure out what was wrong and everything would go back to the way it was.  One foot in front of the next.  It’s been nine years and I have since learned that regardless of what any doctor says that I should not get my hopes up, because when they fail to find a diagnosis the fall is that much further.  One foot in front of the next.  Still I spend my days researching what has been diagnosed, the latest research, new specialties, and finding new doctors in the hopes of finding help.  One foot in front of the next.  Of course I’m desperate to get better, I do everything suggested to get there, and I smile and nod through every unwittingly heartless comment from doctors, strangers, friends, and family.  One foot in front of the next.  I have learned every trick to pull me through the worst of times, and there are many, and to cling to the few good ones.  One foot in front of the next.  But really, is this a life? *STUMBLE*

First step is a doosy.

First step is a doosy.

I’m not living, I’m surviving and the two are vastly different.  Someone lives a life, but they only survive a car crash, or cancer, or a hostage situation.  Survival is temporary, then you go back to living.  Survival is a struggle, where you are torn down to nothing but raw and naked skin and then fight beyond what even you knew you were capable of to find your way back.  It is the point of our lowest of lows and those of us that pull through it can lead us to our highest of highs.  We, as a species, are hard wired to struggle to survive.  However, there are always limits.

Survival is about holding on until help arrives.

Survival is about holding on until help arrives.

To be clear, I’m not trying to freak anyone out.  This isn’t a cry for help, a threat or a promise.  I’m just being a little more honest than usual.  I’m tired.  Tired of being the one with the brave face and the fake smile.  It’s not real.  There is so much that you just don’t see.  So much that we hide because we don’t want to scare you, because we don’t want to frighten you, because we don’t want to have to worry about you worrying about us.  We don’t need that on top of everything else.  What you probably don’t see are all the tears, the ones we cry when we are alone, when no one is looking.  You don’t see the hopelessness that seeps in around the edges with every shrug of a doctor’s shoulders and every blank look from friends and family.  You don’t see the anger that chokes the air out our lungs when nothing changes day after day no matter how hard we fight.  Most of all you don’t see how lost we feel.  That we no longer even know what to hope for.  Yes, of course, we all just want to get better, but what is the path to get there?  Do we hope the doctors find a diagnosis?  What if that diagnosis is terrible?  Is that better or worse?  Will things ever change or is this it?  Most of us face all of this alone, so our loved ones can sleep easier at night.

despair

But back to the original question, what does it mean to live.  Those who are chronically ill or in pain are extremely limited in how they can engage with this world.  Whether the illness is physical or mental or both we spend most of our time fighting for small moments of normality.  Whether it was getting to the grocery store or an hour with a friend, it meant more to us than a trip to Italy means to many who are healthy.  We cling to these victories because they are our life lines, they are the moments that help us remember life as we once knew it.  I know that each and every one of us has our tricks, our ways to find a piece of happiness in all this struggle, but I still have to ask: Are you living or just surviving?  And the bigger question–is it enough?

You tell me.

You tell me.

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anger, anxiety, chronic fatigue syndrome, Chronic Illness, Chronic Pain, coping, depression, fear, fibromyalgia and tagged , , , . Bookmark the permalink.

37 Responses to What does it mean to live?

  1. momoseita says:

    I wish there was a way to just make it all go away. All I can offer, which I know must feel like it’s not much, is prayer. I wish you the very best and I pray for complete healing over your body, mind and spirit!

    • leitis23 says:

      I know that no one can fix it. Some good thoughts and kind words are truly all that can be offered. I appreciate every single one. I also appreciate you reading and the feedback. The best thing ithink you can do is share so others know they aren’t alone.

  2. Lorraine Cassini says:

    Wow!! You summed it up great. I’m thankful that my health didn’t betray me until I was in my 40’s. I had a marriage, 2 kids and a divorce behind me. In fact, I didn’t get sick until I was one year into a new marriage after being single for 7 years. Maybe that’s why I don’t feel as cheated as some of the younger victims. You expressed the feeling so well. People who never suffer with chronic pain can truly have no idea of what we go through. I read this at a most opportune time. My pain started back in about an hour ago so I really felt you in this blog. Excellent job!!

    • leitis23 says:

      You’re right I am envious of those who hit more years. Enough time to start a family and feel like they got a decent piece of life even if it wasn’t a whole one. I started getting sick at 26 at was taken down within a year. I’m glad that my words rang true. It means none of us are as alone as we often feel. Though I’m sorry you’re in this particular leaky boat. Please share this blog with others in our situation so no one out there is fighting alone.

  3. It is the question we all must answer If not consciously then by omission. My mother’s back gave out and she lived in constant pain for decades. When hospice was called for palliative care, they looked at her expensive pain patches and said, “They are useless because she doesn’t have any fat.” Thanks to the medical establishment, she was not given morphine because they were worried about an 87 year old woman becoming addicted.

    Eventuually mother passed away on her terms but it did not go unnoticed that all the decades when she was in pain slowly declining from walking to stooping to riding scooters and then mobile chairs that she served an enormous purpose in her only daughter’s widowed life and her grandchildrens’ lives and the lives of those who were her caregivers 24/7. New cars and generous gifts of restored homes some while she was alive and others posthumously.
    No matter what the pain and suffering, one can find purpose and make a difference by example or simply posing the question “What is living?” There are those who have health and possessions who are only shells of human beings and are not living useful examples.
    Thank you for being you and suffering openly with courage.

    • leitis23 says:

      You have aa good point. Sometimes our lives are measured in the ripples we create in the lives of people we touch. That’s why iwrite, when i first got sick the feeling of isolation was killing me faster than anything else. I always hope that my writing relieves that for others who are suffering chronic illness and also fosters a better understanding of what we go through for those around us.

    • leitis23 says:

      Also them not giving your mom pain meds infuriates me, but sadly it’s not surprising. Our medical system right now seems to have an on/off switch. They find something wrong and they fix it, but there doesn’t seem to be any consideration for treating a patient’s suffering in between. They especially don’t concern themselves with pain on the pretense of concern for addiction. The real statistics of people getting addicted to pain meds when they were used to treat pain is less than one percent. We hear about it all the time though, seems a lot of celebrities get addicted after being treated for an injury. I suspect this is all spin… what’s more sympathetic? Hearing your favorite actor had to go to rehab because he got addicted to pain meds after an injury on the job or hearing he had a long standing coke habit that they could no longer hide? Problem is people with legitimate pain suffer the consequences. Very frustrating, very common. Please share with anyone you think this blog would help.

      • I will pass the blog along and thank you again for writing. If I had known my trips with mother to try a shot in her spine (which they stopped trying because her spine was so fused) could have been avoided with morphine no doctor would have stopped me from getting.

        I watched the programs on the legalization of pot for medical and now recreation in Colorado and wonder if that makes sense for my future. It will have to be in brownies bec I don’t know how to smoke. Please stay the course you are on. What state are you in. Janet

    • leitis23 says:

      I’m in Nevada right now but really aCalifornian. If I ever get vaguely well enough iI how to go back.

  4. Juli Manz says:

    I have CRPS, known as the worst chronic pain there is according to the McGill Pain Index. I am not living. I am only surviving. I was 36-years old at the time of diagnosis; I am now 43. It has been a long seven years. There is no physical therapy for bottom of the foot Complex Regional Pain Syndrome, although I tried it twice. I also tried nerve blocks and a spinal cord stimulator. Now I simply rely on multiple medications to help control uncontrollable pain. Fortunately, my pain doctor prescribes opiates regularly with no fear of addiction because chronic pain patient do not become addicted to their meds, as studied by many researchers and published in a 2005 New England Journal of Medicine report citing addiction and why we don’t experience a “high” from our meds. I only wish my meds made me high to escape the pain. Unfortunately, the pain eats the psycogenic properties that causes the high. People with acute pain who keep taking meds after the pain is gone end up addicted, and that’s who we hear about in the news. Not chronic pain patient who need their meds — we get a bad rep for being confused with a different type of pain all together.

    Although my pain was isolated to my right foot and ankle, it has spread to my whole body. I feel the burn, stabbing, electrical shocks, and deep bone pain everywhere. Last year, I attempted suicide because I gave up living with this insidious pain. I came very close to dying. I am no longer suicidal, thanks to intensive treatment, but I’m not exactly living either. I rarely leave the house and when I do make plans, I inevitably cancel them because of pain.

    The good news is I started teaching myself to walk again. After six and half years in a wheelchair, or other assisted device, I can now take about 6,000 steps. I still need my wheelchair for shopping and any distance, but it feels great to walk into a restaurant instead of wheeling in. I pay in pain for every step I take, but it’s worth it. My husband and I just celebrated our 16th wedding anniversary; he has been my rock through my illness. As my primary caretaker, learning to walk again eases his burden considerably. I am now able to help with some light housekeeping and dinner prep. My 15-year old daughter is also proud of of the strides I’m taking despite the pain. Walking or not, pain is pain and I live on a diet of 20-some pills a day.

    I lost my life when I got sick in 2008. The life I lead now is nothing. Your blog touched me in my heart. I can empathise completely about when people talk about what’s going on in their lives. It used to actually make me mad. Now it just makes me feel empty. I no longer know what it means what it means to feel alive. I am simply surviving.

    • leitis23 says:

      Wow, you have really been through the ringer. I’m right there with you. IIunderstand how you struggle and ihope that the article gave your husband a little insight. It’s hard, people just don’t understand, I imagine it’s hard to understand unless you live it. We are so used to relying on our eyes and we mostly look fine. Sadly that doesn’t show how we feel. Physically and mentally. Maybe people believe is sort of about the pain. Certainly they have no idea about the truth of it but no one realizes how much we struggle mentally. The suicide rate for chronic pain patients is very high and it’s not surprising. Istruggle every day to find areason, any reason to keep going. II envy people who have died because they are off the hook. No pain, no struggle, rest. Yet we all fight, hold on to the smallest of threads, keep trying. Walking is a great step, take that victory and celebrate it until your head falls off. Remember to be kind to yourself, give yourself a break, this a marathon and it’s not for the faint of heart. We aren’t the weak, we are the epitome of strength.

  5. Laura says:

    Thank you so much for putting into such eloquent words how all of us with chronic pain feel. It’s a club that no one wants to be a part of, but I am so thankful to know that there are people out there who understand exactly how I feel. It still gnaws at me when a friend or colleague complains about a headache they have had for an hour, or a pulled muscle in their back or how tired they are because they didn’t sleep well for one night. I have had headaches that last for over a week. I have had severe back and neck pain (and unsuccessful surgeries) for 8 years. And I have not slept through the night (most nights I’m lucky to get a couple hours of sleep) in over 20 years. So the fact that these people who know me and know my plight can make such careless and idiotic comments to me makes it painfully obvious how much ignorance there is out there. Thank goodness I have a couple amazing people in my life who, although they have not personally suffered with chronic pain, they love and care about me so much and know me so well and support me. So I keep going on, hoping to find answers and some relief. Thank you, again, for writing about this and sharing yourself with us. You are touching so many lives.

    • leitis23 says:

      Thank you for reading and commenting. I appreciate it very much. You have had a really rough ride for a really long time. I have many of the same problems with back and neck pain, migraines, and sleep problems. Or can they really be sleep problems if we don’t sleep? I understand how hard it can be when the people around you complain about their minor physical issues. Still over time I have come to realize that if I hope to have people view me with compassion I need to offer the same or greater compassion to them. No their headache is nothing compared to twenty years of migraines, but to them, within the scope of their experience, it is suffering. Yes, you will always have the jerk reaction of “you have no idea of what, pain, suffering, exhaustion really is.” and it is ABSOLUTELY justified. But what you put out comes back. So if you just let that thought stay a thought and take a second to realize that from their point of view this is pain, you can empathize and next time you’re suffering they are more likely to give you the same. It’s just something I have found to be the case over time. Mind you, there are some people that make heartless and cruel comments and I’m not saying you should tolerate that. But pain is universal, only the degree differs. It’s just a thought, I don’t know any more or less than anyone else. Thank you for reading, I write in the hopes of helping. So many of us feel so alone, so helpless, so lost, why not feel all of that together, right? That’s at least a little bit better.

      • Laura says:

        I must have stated my feelings the wrong way in my comment above. I am kind and understanding and listen when others tell me about their pain. I offer pain relief tips (since I’m an “expert”) and if/when they finally say, “Oh, I shouldn’t complain to you about pain”, I tell them that just because I have my issues does not mean their situation is not painful or disturbing to them. I understand that pain is pain. I sympathize with anyone who is in any kind of pain. I just get frustrated when someone says something like ” I wish I could go in the back room and lie down in the middle of the day” when I only do that because I can’t survive the day without it. Or when someone goes on and on about her pulled muscle and wonders aloud why she is so unlucky to be suffering for so long (like a day!). That was the point I was trying to make. Sorry for the confusion.

      • leitis23 says:

        I understand what you mean, that can be frustrating. What really gets me is when their whole day is ruined by traffic, or Starbucks screwed up their order, or they spilled something on their favorite shirt. Then all I can think is I would kill for their “problems”

  6. It is a human condition not to be able to “feel” what others feel. Perhaps a better way to say it is “how” they experience what they experience.” This is true about grief as an example of emotional pain. A year after my husband died, Mother said “Well, that was a year ago.” It was in the context of “Get over it and move on.” Seven years later when Daddy died, Mother and I talked about that previous statement and she admitted that she had no idea of the depth of the loss and its affect on me and my sons. It’s been 22 years since Tom died and 15 since Daddy died and 7 since Mother died and I will always feel their absence. No other human can “be” as I am.

    Back to pain. Sorry to talk too much. No one can experience it as we do individually; however, one can develop enough empathy and sensitivity to be supportive and thoughtful and perhaps acknowledge that we are very limited in our abilities. Even then I found out that because we are tasked with living through our own life
    challenges, we most often have a timeline of listening and sympathizing. At some point we can no longer “engage” in someone else’s suffering. It isn’t because we are not good persons, it’s just that we have to tend to our own lives in order to “live” them to their fullest whatever that means.

    I used to spend weekends in bed in my 30, 40, and 50’s with migraines (as did Mother) so I have felt chronic pain. However, that is NOTHING compared to the chronic pain you all are writing about. Therefore I do not say I am comparing my experience to yours only that I have felt debilitating pain briefly. I honor your courage to carry on. I believe there can be purpose in life no matter what the circumstance and pray that I will find that strength to live meaningfully, to carry on in spite of……….

    • leitis23 says:

      I had a very similar experience with grief a little over a year before I got sick. I was quite young at the time and I lost my first love. None of my friends understood and I got a lot of comments to “just get over it.” Well grief doesn’t work that way. We never get over it. We only find a way to make it part of us. But there was no one around to tell me that. So I was trying to find a way back to how I was before, well, that doesn’t work. It did a lot of damage. To me, and a lot of my friendships. I still remember their exact words. In some cases it took over a decade to understand what I was going through, but in almost ever case I received an apology. Some things you just don’t understand until you have lived it. I suspect the same is true for chronic illness and pain. We live very difficult lives, and you’re right, it is not because we are bad people, but sometimes it is really hard to sympathize with other people’s problems. But I think the reason is much more basic. I think we can no longer relate. In terms of just a head ache or a sprain or pulled muscle, the experience is acute, meaning it will end, and we don’t remember what it is like to know that our pain will end. In terms of things like work stress, bad traffic, house work, or whatever normal people worry about, I have no idea anymore, we just can’t relate. The idea of traffic or tight pants being the worst thing in our lives is so far out of our experience in might was well be a Martian. We just don’t get it. Still I think that it is possible to let whatever first thought of comparison pops into our head pass and step out of our own head and offer compassion. We don’t need to understand the situation, we just need to understand that it is hard for them and we know what it is like to have life be hard. Thank you so much for reading and commenting and the compliment.

      • fallconskat says:

        you never “get over” losing someone you love. the pain eases to a back burner with occasional high spikes…but it’s always still there.

      • leitis23 says:

        No you don’t. You make it part of yourself. Unfortunately our culture likes to stick it fingers in our ears and close our eyes and make like death doesn’t exist. So no one tells us that when we are young. I expected to get better. That did not work. I was also a young adult and no-one my age had lost anyone that close so I was pressured to get over it. People said some pretty heartless things, hopefully out of ignorance. We need a culture that teaches about death.

  7. I really love your writing, Kristin. I read everything that comes through. It is so personal, and therefore, so interesting. thank you for doing it, for taking the time and effort. …cindy

  8. danni says:

    The only answer I can give you is , that your life was given to you by God. And even this suffering that you’re going through right now, was ordained by God, since there is nothing that happens that’s out of His control…. It is time to turn to the Creator, the Lord Jesus Christ…. the one who died and suffered for sinners…. so that whoever comes to Him in faith and believes in Him, would have “eternal life”. You see, life on this world is going to end, for everyone and it doesn’t really matter if someone is healthy all his life or not… at one point ,everybody dies & will face God to give an account for his life … turn to Him, repent, and find “real life”. Praying for you to find real hope!

    • Juli says:

      Before and during my life in pain, I live for the Lord. Nothing will ever change that. He is my sovereign King. However, as you may wr know, people have two reactions when struck with tragedy like chronic illness and or pain: the r brass the Lord or turn away completely. I had solid relationship, so I embraced. My husband did not, so he blamed and turned away. Some people have no concept of God at all and we need to accept them even if we don’t agree. I applaid your sharing the Word. However, your comment seems like a comendation, rather than a extortion of love. Perhaps I read it wrong, but I felt condemned rather than loved and I’m a believer.

  9. Suzanne Grabber says:

    This is a bit of a late reply to this post, but I recently had such a struggle with this very issue that I just wanted to write about it and maybe it will help someone. I’ve had fibromyalgia since the mid eighties, as well as chronic fatigue, a failed back surgery causing arachnoiditis about 7 years ago along wiith other miscellaneous “maladies’. I had always tried to hide my pain and “fake” feeling well to my family and then pay for it for days afterwards, but I didn’t want to burden anyone (my husband saw it, and my daughter saw a little, but no one else did) Finally one day, I just was too tired to fight it anymore, with that came depression, and the question, Is this life? Why am I living, what for? Well, after several months of real sadness, I haven’t been able to work in years, grown kids, husband works, so day after day of being alone, living out in the country, I had a lot of time to think. After much pain I decided that I had to figure out something that I cared about and instead of looking at what I can’t do, had to find something I could do. Sort of like your blog, that helps people, I have dogs that I love, that keep me company, and give me something to care about and something I can care for, so I decided to volunteer doing a website for a rescue group. I had to learn how to do it, they taught me. I also started to write down everything I did do, from balancing the checkbook to folding a load of towels to somedays just getting out of bed. I saw that I can do somethings, even a few worthwhile ones and that’s going to have to do for now. We so have to live one day at a time, that I try and just concentrate on what I can do on that day, and try to keep a log to look back on. It has helped my mood a lot and I don’t feel quite as worthless. I’m not saving the world, and probably not even being a “good” wife with having dinner ready etc., but I’m not a complete waste of breathe.and I now know it…Thanks for giving me the place to say it!!!! and, I’m following you now too!!

  10. fallconskat says:

    i just found this blog…and thank you. i’m 52 now, and my first symptoms of fibromyalgia were in my early teens. then came the hormone- triggered headaches. broken bones that lead to arthritis. ovarian cysts. nerve damage in my back. diabetes, the type with shots. oh, and the TRUE JOY of being able to say “yes, i did have pain after using your cholesterol medication, and it became permanent”. it was hard to walk distances before, now it’s to the impossible point.

    i’m also a mother who still has a wonderful relationship with my (second) ex, two grown kids, and a granddaughter who is nearly 3. i’m married to a (mostly) great guy who thinks i am hawt on a stick for the last 6 years. i do a lot of surviving, with occasional forays into living. i have a service dog who alerts on my blood sugar lows, she brings me a lot of joy (and warmth when she sleeps next to me) and a reason to get my butt out of bed in the bed in the morning. (not that i WANT to, but that i HAVE to.)

    it’s rough. i’m under medicated by anyone’s definition, and i would not wish this crap on a single individual. ok, with the exception of my first husband and his mother, but they’re special circumstances. 😉 bless you darlin.

    • leitis23 says:

      You made me laugh with that last line. I’m always grateful for that. Sometimes there are exceptions. I’m really glad you’re enjoying the blog. When I first got sick I think the worst part was how very alone I felt. I don’t want anyone else to feel that. It hurts too on top of everything else.

  11. Shelley Glenn says:

    crying Thank you thank you thank you! I’m sorry that you, too, live with chronic pain but am so thankful that somebody else is experiencing the same thoughts that I experience. Hugs

  12. justjill says:

    I wanted to write you before today to tell you how much I can relate to this. Also, mad praise for being so freaking funny and witty and sarcastic all while getting your point across. It takes a lot of work to be entertaining and not just vent, although I know I use humor as a defense mechanism. But your blog does not strike me as defensive at all. Just honest and it makes me laugh!

    I have thought a lot about your “what does it mean to live” post, and my response varies by what kind of day/symptoms I have had.

    Today I found myself trying to pep talk myself into “being positive” about having another procedure done because “I’m a pioneer.” to which I replied “I HATE being a pioneer. again.” to which my positive side retorted: “Maybe you were born to stretch science. They can’t solve what doesn’t present as a problem.” That shut me up until I heard myself say out loud like an epiphany: “You weren’t supposed to survive. You weren’t supposed to survive and THAT’s why you’re being punished!” Thank God I had this revelation after work on the way to the parking structure and not at the beginning of the day. I sobbed. But I felt relief. It rang true to me. It felt true. I know it’s not the best thought, but I’m not going to try to judge it or fix it yet. I’m just sitting on it. Letting myself grieve, since now I have the start of an understanding of what my mind has been suppressing for so long. ( long story short I was born with a congenital heart defect and have had multiple surgeries to fix it. It’s fixed but created other problems which never end.)

    I made the mistake of sharing this revelation with my boyfriend. He blew it off. I can’t even give that a second thought.
    I don’t know who else would even begin to understand except you and anyone reading this blog. And even if no one understands, it’s okay. Because people who get that life is not always sunshine and rainbows might be okay with me sharing that.

    Keep posting. Keep going. Hugs and high fives to you.
    jill

  13. kait says:

    Thank you!!! I’ve been living with crps for 9 years, and am so tired of explaining to people things I know they will never comprehend. I finally broke my silence the other week on facebook, saying many of the things you just said. It helps so much to know that even though I will never meet you and our conditions may be completely different, that I am not alone, even when I’m bedridden alone for days on end. I say to people often….i occasionally break down and offer truth to my loved ones, let my guard down, which I hate doing. And that person always feels bad, sympathetic, even is moved to tears just seeing me in bed, writhing in pain, too exhausted to even cry, battling paralysis and worst of all, knowing that my condition will only worsen and not improve. I know it weighs in the mind of my loved ones and for that reason I usually try to fake it or avoid them. What people seem to forget though, is that when they are done with their visit, their life goes on. Ours remains pitted in despair, despondence, hopelessness, frustration,etc. Our minds warped by constant agony thats indescribable, torn apart with depression, anxiety and without relief even if were lucky to get an hour or two of sleep. Existing snd living are vastly different. Everyone has problems, indeed, but most fade or disappear with time. While others get respite and recover and heal….we do not. And we should be able to voice our honest feelings about our life without being labeled as crazy or thrown into a loony bin BC we at times feel suicidal or hopeless. I’m so glad I found this site. While I hate the thought of anyone going thru what I do, it gives me comfort to know I am not the only one who is constantly in battle. ❤

  14. Lauren L says:

    Thank you for writing this. Please keep writing. You have a gift, and are able to articulate what others in pain, including me, are feeling.

  15. Barb says:

    OMG!!!! Thank you!!!! I just found this site and your story truly hit home with me. For the first time in 3yrs I feel I am not alone in this battle with CRPS. Please continue to write, you have a beautiful way with words. I have not found the strength to be open with my illness and feelings with my friends and family but hopefully that will come in time. Thank you for expressing exactly what I am feeling!!!

  16. Frank says:

    You are my sister. I was a paramedic, a mountaineer, a paraglider pilot. That was life for me. Lucky while it lasted and I did relish it. Now? To be or not to be that IS the question.

    • leitis23 says:

      It’s a tough question, but I’m slowly finding ways to do the things I love. Just not the same, I’m limited in many ways but I managed to travel again. Maybe it’s just a matter of being creative. Mind you it took me a month to recover from my trip but I still did it and that’s what really matters to me.

    • leitis23 says:

      I wish we had met in another life. I went paragliding off the alps. Pretty amazing, but really loved the challenge of rock climbing. Now I can barely walk.

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