The People Society Forgot

Have you noticed how insanely busy everyone is? And I do mean insanely!!! Life is non-stop running from this place to that, calendars are full, people have very little time to invest in each other anymore or cultivate relationships.

It is almost hard to remember days gone by (hey I’m getting old) before cell phones and social media when people actually talked to each other more. They had time for their friends, getting together to visit was simpler… it didn’t involve so much coordination and stress. Oh, and people cared for each other. Remember that? 

Now before I come off as bashing the character of everyone in our western society; I’m not sure who to blame, it just seems to be what happened to all of us, and most people are not unkind or unfeeling, it’s just that they’re so darn busy.

For the chronically ill that have fallen off the conveyer belt of this life that drives, drives, drives and never stops moving or let’s anyone take a breath…. we often feel forgotten. 

Now what’s great is that when you are not well enough to be uber social, cell phones and social media are a life saver, at least in some ways. You see we also have a window into the world that has forgotten us; people that goon hikes, hang with friends, go out to dinner, spend time with everyone but you because everyone else is up and mobile and, frankly more fun.

Ahhh the chronic illness suffer, we are like a low budget B movie that was made 20 years ago that most people forgot even existed, until someone says something like “hey wasn’t ‘_____’ like at that thing with that other person we went to way back when”?

Now you (normal person) may actually think of us from time to time, pray for us, have us run across your mind…. But guess what? We don’t know that!!!!!. 

Silence= I don’t matter and you don’t care. 

Again, I’m sure the person reading this is a good person, and a busy person, but maybe just as a favor to me, when “_____” comes to your mind and you haven’t seen them in a while and you know they are struggling, send a quick text, an IM, or maybe one of those old-fashioned phone call things. 

Please Imagine being too sick to do what you are out doing right now, and instead that you were home alone most of the time,  imagine (some) of your friends staying silent, for weeks, months…. 

Now Imagine now if they weren’t.

Thanks for listening readers 💚

Is Hope A Burden? And Accepting Circumstances…

I have been in a different place as of late; all I can say is that there has been an internal shift and this last round of die-off did something to me on a deep level.

As you know (I think at least) I had kind of a double whammy that began with starting a cellular detox May 20th followed by treatment by my LLDC May 23rd where he found that the three B’s were in remission, but that I had Epstein Barr, Non-STD Clamydia, Erhlychia, Lyme Coinfection virus A and C, plus Protozoa.  The first several days after treatment I was fine, felt great in fact and even had some activities with friends. But then I got hit hard and went back down the rabbit hole as I call it. I had been experiencing horrible body pain (much worse than the norm), bad enough to keep me from sleeping at night and causing several bouts of tears, both from the pain and frustration. Also any energy I had got snuffed out, went into a foggy place again, swelling worse… You know, all the usual stuff. 

Somewhere in the midst of this the hopeful light in me went out; it’s just been too many years….too much struggle. Thankfully I felt a slight lift a few days ago and checking the calendar it coincided almost exactly with six weeks post/treatment (they always say die off runs about six weeks with this therapy). I am still not feeling great but I think (hope) this accute bad spell is behind me. But I am left on the other side of this most recent storm a little different than when I went in. It’s hard to explain; I have been through the mind-numbing years when things were unbearable and I was in a state of apathy, grieving and hopelessness, simply surviving one day at a time. I have been through the period following this of awakening and letting go of grief and the regrets of lost time and loss of life and having so much hope for the future… Letting myself dream again. But now I seem to be in a place of complacent acceptance where hope itself has become a burden and not a joy. 

I guess I need to clarify that I have not lost hope in the Lord or the fact that He has good things planned for me or is doing good things, not at all. By His grace I have grown so much and continue to grow. I am blessed by a family I love dearly and we all weather this ongoing storm of chronic illness together because we are all in the same boat, it’s drawn us closer. I am blessed by some of the best friends a person could possibly have. I am blessed by my dog who is a gift from God (Shiloh’s Story). I am immensely blessed by my current job and the people I work with. But I am coming to recognize that some things I hoped would happen in my life are not happening and may never happen, and living every day thinking about what may never be is exhausting. So I am mentally closing the door on finding love, having a family, being “normal”, traveling, all the stuff that people do….  If God chooses to open that door that’s up to Him and it will be welcome, but I need to accept this little room and this life the way it is and just live my best for God one footstep at a time, one encounter at a time. If an online platform for fellow I.I. Sufferers is my calling and my little window out into the world, I have to be okay with that.

No I can’t be financially independent. Yes I have limited energy and have to manage my spoons. Yes life is a yo-yo with periods of brief normalcy followed by times of scraping by. Folks I’m just tired, and desires for the big stuff has kind of been squelched. 

Is this a good thing or a bad thing? Honestly I’m not sure, and the answer may be a little of both. I have been reminded a few times lately of Joni Earicson Tada and her story and her amazing minsistry. She had to come to acceptance of the fact that she would never use her arms or legs again (something that is unimaginable to me) and she has lived in so much grace and love. She has touched millions and that never could have happened if she grew bitter or kept striving for healing that would never come. I can’t think of a better role model than Joni. Who am I then to think I deserve better than this life of struggle I am living? Even if I am single forever and I never have a typical/normal life or the things most people take for granted, Or will never be able to eat everything I want, or do activities I want, if I forever have to pick and choose between things in life according to my energy level, if I have to deal with a certain level of constant pain, fatigue and swelling…I am still blessed and I can do a lot if I just let God do whatever He wants to do with me day by day.

So today after having taken a nap that has (again) become a common occurrence, sitting here on my bed with a bit of deep tissue pain, the usual swelling, headache and fatigue… I recognize I was also able to take a little walk in the pleasant summer rain with my fur baby love of my life, come home to a safe comfortable place to my loving family, and be able to write this post. Life is hard, but it can still be good 🙂


Beautiful slightly stormy sky this evening 

When People Put You Down For Not “Looking Sick”…. :P

So how do you explain Lyme disease to someone who thinks you “look fine”?

“Imagine the worst flu you ever had. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you.….”

http://www.livinglyme.com/Explain-Lyme-Disease.html

So what does “sick” look like anyway? Hair falling out? Swooning on the sofa? Grey clammy skin? Unable to stand up? Most chronically ill people (including a lot of cancer patients, those with heart disease, etc and other “respected” diseases can look perfectly fine). There are those of us Lymies who do suffer from the above mentioned symptoms…these, and far worse. However for the functioning or semi-functioning Lymie not looking like you are suffering while you are suffering on the inside can be a challenge. To everyone around you you might sound like a broken record and people can get weary of the “unending troubles”.

To those of you who know Lyme sufferers; trust us folks we are weary too! We grow tired of how we must sound to you every time you ask us how we are doing. We hate that question because the answer usually involves the high points and low points of our day (which can change radically), one symptom being better while another one is worse… We know how we sound, we are much more tired of talking about our suffering than you are of hearing about it.

Also know that you are statistically more  likely see us when we are at our best, and those times when we “disappear” off the face of the earth for days, weeks or months at a time are the times when we more than likely are in fact swooned on the couch (tv remote in hand).

Please understand how lonely and isolating this life is for us. ( https://jeanvieve7.wordpress.com/2013/07/15/the-emotions-of-an-invisible-illness/ ) The toll it takes on us not just physically but mentally and emotionally. Some of us feel that we have even lost our humanity and who we are as people, and we want nothing more than to get back to real life.

( http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/  )

Trust us, this isn’t fun and we don’t want to be coddled or get undue attention, only understanding and (hope of all hopes) a cure.

Thanks for listening.

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A Shadow Of Me

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The past couple weeks have been really tough; after spending a couple months feeling like I had hit a huge milestone in my Lyme journey with more energy, I have again hit a wall.
So about 11 months into my Lyme treatment I was feeling a lot better, had a lot more energy, was actually living again. But for about the past 5 weeks or so I have been struggling horribly with fatigue. I have also had some worse swelling and food cravings. My doctor is not sure what is going on but she ( my natural doctor not my Lyme doctor) thinks something is again blocking my detox pathway and is causing me to slump. Now besides that my body has also been battling whatever viruses are going around, so I think my body is just overwhelmed, and sleeping 9-10 hours on weekends just isn’t enough. Right now I honestly feel like I need to sleep for about two months until I get past this. My doctor wants to run another test to see what is blocking my detox pathway, but of course I need to just survive until I get an answer.
I feel like I had a moment in the sun, and it was my first real light in many years. Now I have sort of stepped back into shadow, and feel like only a fraction of a whole person. I hate “survival mode”, hate it, hate it, hate it.
Okay enough with the tantrum. I know that even though I am struggling I am still better than I was months ago, so I am still grateful. Another thing is that God has been revealing so much to me within these last couple months I feel like my inner self wants to explode out of this weak body and just go in every direction at once. I am afflicted but not crushed, perplexed but not in despair. I am down in body and have momentary sadnesses, but I have had times of unspeakable joy that has never been matched by the good times I have had in healthier times of my life. Thank you Daddy. Better days to come

The a Emotional Ups and Downs of Lyme, you are not Alone

This is a re-post from May, but it is so relevant to the journey of the Lyme sufferer. When you are so ill that you are barely functioning you literally just live life day to day, because that is all you can handle, I call it survivor mode. When in survivor mode you ignore all the “big” things…all the things that normal people are out there doing because it is just too much, and too painful. So what happens when you start to feel a little better? You realize how much older you are, how many years this disease has eaten away, how very lonely and single you are (at least me), and that your youth was eaten by bacteria…literally. 

   I am in NO way ungrateful, but the emotional toll of Lyme can be equally if not more of a trial than the illness itself. That said, here is my original post:
 
Feelings and Emotions
Lyme disease can be (dependent on your symptoms) what is called an invisible illness. Meaning that you can “look” fine while inwardly you are suffering pain, fatigue, weakness, brain haze and confusion, visual problems, “Lyme brain” (dyslexia, inhibited reading comprehension, cognitive issues, memory problems, inhibited name and word recollection), digestive disorders, edema, poor circulation, cellular oxygen starvation, reduced lung function….
  
       These are all symptoms that the people around really can’t see, and it is hard to explain sometimes to someone that you generally just don’t feel well. I think people are more understanding of people who are in cancer treatment and going through chemo, how horrible they can feel, their disabling fatigue and pain. Now please, do NOT think that I mean everyone with Lyme is going through what some cancer patients go through, I just mean that the general public know and understand cancer better.
        I am going to run down some of my personal emotional experiences of being sick, before and after diagnosis. Since I have not experienced some of the very severe symptoms of Lyme I am not going to bring them up (Seizures, Palsy, MS symptoms, Alzheimer’s symptoms, ALS symptoms,….death).
 
ISOLATION: It begins slowly, you are too tired on the weekend or after work so see your friends or do the activities you used to do. People who you used to see regularly don’t call as often and stop inviting you to activities, because they know you will just say no. After time you stop contacting other people, you lose interest in social activities, both because you don’t have the energy and because your brain hormones are now so out of balance you simply don’t care. A state of apathy takes over and your world is your illness. If you are able to work this requires 100% of whatever mental and physical energy you have just to function. At the end of the day you are tapped out, and you honestly don’t even have the desire to talk to anyone. For those around you it may seem like you don’t care anymore, you may be grumpy and irritable, and you don’t communicate like you used to. For you the “not caring” is true, not because you truly don’t care, but because fatigue has set into your brain and bones and you find you don’t have the ability to care.
 
  DEPRESSION AND LOSS OF SELF: Depression and physical/mental fatigue can be hard to separate sometimes, and honestly I do not always know where one ends and one begins, or at what point they are like paint colors mixed together, indistinguishable one from the other, but I will try. Depression comes on slowly, fueled by the physical pain and symptoms, encouraged by the isolation, and made prominent by losing yourself. By “losing yourself”  I mean I think back to who I was in the past, in those windows of time when I was fairly healthy; I loved photography, hiking, biking, yoga, writing, art, music, being creative, cooking and baking, and many other things. As illness takes over those things fall away, and then your interest in those things falls away, and then the very memory of those interests and desires falls away, and suddenly you really don’t remember what it feels like to be you. Nothing is interesting anymore, and even if it was it takes too much energy to pursue it. So when you spend what little energy you possess on just your responsibilities (job, laundry, doctor appointments) and nothing else, you go into survival mode, and life is about just getting by…..taking pills….breathing, you become a drone.
It took me a while to realize that the lack of emotion that had become my reality was itself an emotion as well. Depression is often not always “feeling” down, but shutting down. I also went through a few months in my treatment where I literally was bed ridden most of the time, during that time I did reach a few rungs lower on the depression ladder. I thought of giving up, that life wasn’t worth it anymore, that things just kept getting worse not better. I am thankful that slowly, a few steps at a time that period did dissipate, both with high doses of vitamin B and just with time…getting past that rough patch in my treatment. But I need to say most of all God was speaking to me through all of it, and trying to reach me on a deeper level, and I had to actively reach back and be embraced.
 
ANGER: Anger (for me) has been strongly tied into the physical, but it is still a strong emotion I have experienced throughout all this. I have been angry at life for many years for cheating me out of my youth, for robbing me of experiences, for eating my flesh and my cells and my skin…experiencing physical time passing without reaping any of the benefits those years could have given me.I even have to admit experiencing times when I was angry at God. I didn’t want to be, I knew He was good, that He had reason and a purpose, but when you are sick and “blind” all you know is your pain and disappointment, and anger. Thankfully I have talked it through with Him, and have been led back out. But it was not until I surrendered that God has started to open my eyes to some of the reasons I am on this journey. FYI, be very careful if you ever consider praying with an honest heart for faith and a strong testimony, you do not know what you are going to get.
     Like I said, anger for me can be unexpected and mostly physical, primarily tied to my liver. This might sound odd, but it is true, and Angry Liver isn’t just some random term. When my liver is “angry” (overly toxic, backed up, overwhelmed) the anger can be very mild, or I can feel like I want to punch, kick and swear for absolutely no reason, and then be miss sunshine again the next day. Thankfully I now recognize it when it happens, and have tuned in to the actual physical feeling that comes with it. There are different methods to helping your liver along, some of which are probably TMI for the emotion page, but I have learned to deal with.
 
      SUMMARY:So these are the base negative emotions that I have gone through, all in various degrees at different times. I am better than I was in 2012, but I still have a long way to go. Taking care of the emotional toll an invisible illness has on you is a multiple course of action process;
 
       Time. Just getting through the time it takes with your Lyme treatment, letting the drugs run their course, getting past when they make you feel worse, making it through the worst of your die-off and Herx reactions.
 
     Love. I am blessed to have people in my life that love and care for me, both friends and family. Surround yourself with the people that love you, that are willing to listen to what you are going through and want to try and understand.
 
    Acceptance. This was the hardest part for me because I did not (still don’t) want my identity to be that of a sick person. But you do come to realize that is who you are anyway, whether you label it or not. This is the life you are living. There seems to be a process when you are diagnosed with an illness; Denial, shock, depression, acceptance, fight! Accept where you are in this process, move forward with optimism but accept where your body is now. This will free your expectations and your mind so you can get better. Be kind to yourself, even if you can’t do much spoil yourself with good music, beautiful pictures, whatever brings you even a spark of joy.
 
   Community. It has been very encouraging and supportive to find others out there that are going through similar experiences. Through WordPress and Tumblr I have found others that can support me, and that I can encourage as well. As far as you are able, reach out.
 
     God. You may or may not be at the place where you have a relationship with God, I hope you are. I cannot imagine going through what I have without knowing that I have a Father, a Protector, a Shield.  He is my Strength, my Hope, my Everything. I know “I have a future and a hope” in Him. I know that “All things work together for the good of those who love God and are called according to His purpose”. This journey has been tough, but knowing that it is being used for God’s purpose does give me peace and hope. He knew all this was going to happen, nothing is a surprise to Him, He gave me this set of circumstances because He deemed I could handle it, and submit to His will being done through it. I have been honored

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