Lymonade anyone?
In my first years as a Lymie, during the short occasions I was going out socializing with friends, I found myself talking about my Lyme disease. Usually people were talking about how great everything was going for them, what had happened at work, what shopping spree the girls had, what restaurant they have gone, and babies. None of those topics was contingent with what I had on my depressed agenda.
My days were passing at a totally different pace, in a different environment where I had to deal constantly with my sickness which had taken over my life. My sickness was ruling how my day would go. I never liked to identify myself as a sick person or make my sickness the mainstream of my life.
Let's be honest! Who wants to hear sad stories? Who has time for this? Who likes to be around sick people? Most of the people treat this topic with politeness but never go into many details for many many reasons. Maybe they don’t want to know, or it is scary.
Maybe they don’t have the time. Maybe they try to avoid such uncomfortable topics which they might feel trapped thinking the sick person would ask for their help. Or maybe they want to spare the the sick person of feeling down or embarrassed of not being able to share the same glorious lifestyle as them. Maybe they feel pity and they acknowledge that if they show it, it might offend the sick person.
During those social gatherings me and my friends we were not reasoning on the same frequency. After a while I preferred to socially withdraw, invoking same sickness related excuses for each social event I got invented to. Back then I was depressed and I had no idea about it.
I felt I had nothing in common with my friends. They were going on with their fancy lives while I was fighting against the whole word, without them showing any bit of real interest in my cause. I was fighting the insurance company, their doctors, my employer, my friends and relatives who were telling me that it was all in my head.
Among the few allies there were my Lyme specialist, my family doctor and two of my close friends. They kept me going. They still do! My new Lyme diet was tough and because of it I stopped smoking as well. I had my last cigarette on June 30th 2011, on a terrace in Saint-Augustin, Florida.
For over one year I did not feel like going anywhere. More, I found repulsive the idea of doing so, just for the sake of some conventional gossip, superficial small talk and coming back home hungry after having attended a dinner party.
Getting ready for a dinner party it was taking much longer than before. Most of the times I couldn’t eat any of the dishes served at the table due to my strict diet.
Couple of times I even got angry and thought that my friends should have considered asking me what I could eat or no, instead of just apologizing in the end for it. After it happened couple of times, I was not sure if they were doing it on purpose or not, but then I realized I was exaggerating.
Eventually I had reached the point where it did not matter anymore. They were doing it and that was it. I was tired of blaming people. I couldn’t take it anymore. Therefore I stopped calling and returning calls, I reduced the gatherings and visits to none. Slowly the invitations dropped to zero.
Change is always for the better
One morning I asked myself if it wouldn’t be easier for me to do what I could do and completely forget about the others. Solely focus on me and my needs. I kept on telling myself this until I incorporated it into my way of thinking. The moment I changed my way of thinking, everything seemed easier, better, brighter.
It hurt for a few weeks until one day when I discovered I was enjoying my new freedom. I felt free because I could have stayed the whole day without feeling weird, inventing excuses, or having polite conversation in an environment I did not fit.
Slowly I start identifying myself with different mentalities. I discovered parts of myself I had long forgotten, also new emerging ones, taking me to new paths.
For me, my time had become precious. I started to spend more time on my own. What was different this time was the fact that now I was spending time for me and with me. I learnt that small little pleasures could make up for a sleepless night or for couple of hours of pain. Happiness comes in small increments!
Lymie the road
Lyme showed me life in a new light and that I had been taking for granted a lot of things, my health and mobility included. Later on, after I learnt how to cope with the pain and the rest of the remaining symptoms of Lyme, I decided to push my limits even further and make travelling possible again.
So what I had to cary tons of pills and medicine with me? So what I had to be on a strict diet? It wasn't the end of the world! I had gained back my mobility and my joy. Everything was possible as long as I was willing to try it! That year, the idea of becoming a nomad was born.
Everyone around me was shocked when they got the news that I was going to live abroad. You can imagine the look on their faces when I told them that I had no idea what I would do for living and that things would fall into place. A few persons told me that I had lost my mind and I was a fool to leave into the unknown, especially when I was on treatment.
It turned out to be an inspired choice because travelling offered me exactly what I needed: a different reality, a new lens, a new perspective. A new challenge each day that enabled me to focus on other things than my life as a Lymie. Without knowing, Lyme did not seem such a burden anymore because I had embraced it. A few years down the road, I turned into a Lyme advocate and did my best to raise awareness about it.
Here are other Lyme-related posts:
LYME DISEASE COMES WITH CO-INFECTIONS
CHRONIC LYME DISEASE IS A REAL THING
TOP 10 WORST SYMPTOMS OF LYME DISEASE
WHAT ARE THE SIGNS AND SYMPTOMS OF LYME DISEASE?
WHY IS LYME DISEASE TOUGH TO DIAGNOSE?
HOW CAN YOU PROTECT YOURSELF AGAINST TICK BITES?
JOURNEY TO SELF-DISCOVERY
HOW I FOUND THE SILVER LINING OF LYME DISEASE
9 WAYS TO KEEP A RELATIONSHIP GOING WHEN BOTH PARTNERS ARE ILL
All of the above posts were written by me, as part of my Lyme Disease awareness campaign. They were originally published on my personal website A-ZLYME.COM .
If you would like to learn more about Lyme disease, visit A-ZLYME.COM. On my A-Z Lyme blog, I post weekly Lyme-related articles which I might re-post on Steemit, in order to increase the awareness about this infamous illness.
Thank you for reading, I hope you enjoyed it! Feel free to re steemit or up vote it!
Please leave your feedback in the comments, I would love to hear your thoughts!
@2018 LaviPicu aka The Lyme Poet. All rights reserved.
Lots of great information here. I'm glad you found a way to be positive and make the best of your situation. And best of all, sharing it with those who have yet to get to this point, and also those who have someone they know who are struggling with Lyme disease.
Lyme doesn't come easy on anyone who gets it. The least I can do for another sufferer is to share my experience and try to give hope.
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A great post and good to know a bit more of your Lyme ourney what comes through to me is the positiver attitude you choose to have
Thank you! My Lyme journey was quite a roller coaster. It got me stronger and took me out of my introvert shell.
@lymepoet your ability to see the positive from it is inspiring
Frankly...the topic took mebto the lemonade treat....😉 but the post shows the fighting character you have....strong determination and positive outlook is what necessary to be successful...great post 👌
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Thank you for the read and comment!
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Glad to hear that!
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Gotta love a positive take on your life especially when chronic illnesses are involved, congrats on getting featured in today's @asapers post. :D
Thanks, honey for your words and support!
@lymepoet always welcome, I love your stuff, we would curate you nearly every issue through the @asapers if it wasn't inappropriate lol.. Love the newest one with your son's painting, very cool
Awww, you're too kind!
First of all - that limeade pic looks delish! hahahahahaha Now you have me thirsty for sure! :)
but regarding the post... I can relate a bit to those anger issues with diet restrictions and the whole "why me" mentality! It's so hard to think about all the yummies we had to give up and - whhhhhhhhyyyyyyyyyyyy meeeeeeeeeeeeeeee LOLOL
but you're so right - it's not the end of the world! there ARE worse things - and we just needed a change of attitude! I'm glad that you became and advocate - so that you could bring the info out to more who need it! :)
The "why me?" mentality is hard to overcome, not only for those who are sick, but for most of us. Once we stopped acting as a victim, the sun starts shining again.
Your post has been upvoted by the @steemitmamas community account. We are a community of mamas, connected via Steemit and Discord, supporting one another from across the globe.
Thank you for your support!
@lymepoet,
Adversity builds character ... and Lavi, you've got it by the boatload.
BTW ... I believe you too.
After 7 years of research and experimentation (when my Mom was diagnosed with Alzheimer's, my daughter and I turned our dining room into a laboratory), I can assure anyone who's listening that Borrelia Burgdorferi (the spirochete that causes Lyme Disease) is the most complex bacteria on Earth.
Depending upon the strain, it possesses 18-22 plasmids, strands of DNA from other unrelated bacteria that it has absorbed through its cell wall that creates proteins and which provides it with a whole host of survival advantages.
It redefines the word pleomorphic (the ability to change its physiological structure and metabolism in reaction to the environment ... like antibiotics) and is the only known life form on Earth that does not require iron to metabolize proteins ... it uses manganese instead which allows it to avoid one of our body's most potent immune responses to bacterial infection.
Spirochetal DNA is also found in the plaques of 92% of Alzheimer's patients. Of that, 25% is Borrelia Burdorferi and 75% is periodontal spirochetes ... so brush your teeth.
The autopsied brain of an Alzheimer's patient is indistinguishable from someone who died of neurosyphilis. Syphilis is also caused by a spirochete.
The medical profession's dismissal of the claims of Lyme patients borders upon the criminal.
Quill
What a spectacular comment @quillfire! My mother is in the early stages of Alzheimer's and I obviously don't need to tell you the issues that come from that.
I couldn't agree more! The simple fact that you and your daughter discovered this information shows something lacking in the medical profession!
@lynncoyle1,
Hey Lynn.
The world of Alzheimer's Research is SLOWLY beginning to change direction. They wasted 30 years barking up the wrong tree. Once there's a consensus opinion, it becomes almost impossible to changes despite overwhelming evidence that it's wrong.
Spirochetes were discovered in 10/10 Alzheimer's patient plaques in ... 1987 ... by a pathologist named Alan MacDonald. A couple of years later, his finding were confirmed (and augmented ... the 92%: 25%/75% stat) by Judith Miklossy, the gal who ran the Alzheimer's Research Department for the Swiss Government. Evi Sapi at the University of New Haven picked up the baton from there.
My daughter and I have been experimenting with two natural compounds that kill the multitude of pleomorphic forms of Borrelia and ... more difficultly, with how to get the compounds to the plaques and tangles. Our bodies do not cooperate.
Katie's won more Science Fairs than either of us can count. We were planning to move to Montreal so she could attend McGill, but a number of American universities have jumped into the fray and are practically bribing her to go to their universities instead: Free Rides (tuition, room & board) AND substantial research funds to continue her research ... even as a Freshman!
Alas, no one has so much as offered to buy me a cup of coffee. :-)
Anyway, we're playing it by ear.
Quill
Wow!!! That's amazing ... all of it, but especially your daughter! I'd buy you a cup of coffee, but I'm guessing if by chance the opportunity ever did arise, it would be wine we'd be sharing haha
This is really good news though; have you found any "natural compound" worth sharing yet? with a guinea pig I mean?
Thanks, @quillfire! You must be so proud of your genius daughter!
The name of the Great Pretender describes it perfectly!
Just this week I met another physician who was under the impression ticks pass through customs on their way to Canada!!!
That's just embarrassing for all doctors in Canada ... I hope!
Thanks for sharing your heart out @lymepoet. You truly are a warrior! Xx
Thanks @alimasstory!
I am proud of you more than any words can describe and am sending you so much love honey. You are an amazing being and a true inspiration. You are not an inspiration to sick people, you are an inspiration to healthy ones. You live and you think and you grow more than those with no problems at all and I hope that many will find what they need in your story and that many will follow your spark. 💚💚💚
Aww, I'd give you a hug if you were here. Meanwhile, I'll send you a virtual one!
Wow you are very strong and don't forget that. Thank you for sharing things like this remind me I must remember that my life is going pretty well. You have done something really amazing. I hope you can continue to do the things that make you happy
Thank you for your words! Yes, you are right, it is easy to lose focus, get influenced and take things for granted.
It's a shame that people have issues with people who are ill with something they can't see. It's not fun to deal with. It's like the whole 'just get over it' thing. You just want to scream back, 'Don't you think I would, if I could?' Then everything becomes about them and you become 'that' friend.
You're absolutely right, you have to find that point where you are in control of you, you illness and live your life. Great article @lymepoet.
Thank you for the read! Taking control over your life enables you to see things in a new light and get a fair chance to happiness.
It is a particularly difficult illness to deal with and does take much work.
I went through a similar time when I was sick - not having the support of friends or family in the real sense can be very depressing. It really forces you to find strength you never knew you had at a time when you don't feel very strong. But you are strong and look at what you accomplished 'for yourself'!
Keep the faith and keep going @lymepoet
My husband had lyme (it didn't get so heavily buried in his body or at least we've not seen any further progression of symptoms) and my youngest son is being watched as he has some flags on his bloodwork (lyme is so elusive) but our functional medical doctor feels that even if it does turn out to be lyme, it can be taken care of with certain serious protocols. She specializes in biofilms and lyme (among other things).
I hope you can get to the other side of this and one day be free of the lyme.
I am thrilled to hear that you have a Lyme specialist helping you out and that your husband feels good. The tests for Lyme are unreliable. Did your son got bitten by a tick or you think he might have contracted it during the pregnancy, if you don't mind me asking?
yes, he did get bitten a couple of times....lots of ticks around here. Kind of makes you paranoid because you don't even have to be outside - I've occasionally found them lurking inside the house.
My son didn't have the 'rash' but he does have a lot of peculiar symptoms and seems to have a problem with copper metabolism
Of course,some of this mimics 'biofilms' too And yes, the tests for lyme are very unreliable
Crazy that this isn't more exact
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You have such a positive outlook on life which is amazing! You have not let illness stop you from making positive changes, and I am sure someone clever said "without change, there is no progress". I am not clever however and I can't think who said it! (If nobody said it, then I said it haha) xD
Thank you! When you are not given an option or a choice to undo things, you gotta make the best out of that situation.
Thank you so much for sharing this @lymepoet! Although I don't have an illness like this, Brian and I walk a similar path ... taking charge of your thinking and your life regardless of what's happening to your body or what your friends and family may think! Good for you to do just that :)
And being a nomad is awesome!! My mom calls us gypsies haha I think people ridicule it because they're terrified of ever living like that, and so it's much easier to call you 'crazy' instead of calling themselves 'cowards'.