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 💚

The Recipient Of The “No Reply”

Just some musings for today and food for thought.

It’s the feeling you get staring at your IM messenger and seeing that your message has been read by the recipient, but no reply.
It is the feeling of looking at your phone and seeing that you sent that text…..days ago, but no reply.
It is checking your e-mail inbox and wondering if that e-mail you sent per chance went into their spam folder, or into a digital vacuum, or if (gasp) maybe they are injured on the side of the road having flipped their car because they were illegally trying to answer your e-mail while driving and now they are in desperate need of medical care with their phone just out of reach of their fractured fingers….But the result is the same; no reply.

Yes communication has changed and we now live in a digital age. This is a wondrous thing in that we can communicate with each other like never before, anytime, anywhere. For some this is AMAZING because we see too little of people in person and we are hungry for fellowship with friends. For some I know this can also be an annoyance in that we become slaves to our devices. No matter how you feel about digital communication I want to set that aside for a moment and have you consider the thoughts and feelings of the recipient of the “no reply” (please note I am not talking about those that get back to you hours or a day or two later, I know we are busy).

The things that the No Replyee might be thinking or feeling

1. I don’t matter to you.
2. I annoy you
3. You don’t like me
4. I am very low on the list of people in your life
5. I think you are a rude person who is giving me the equivalent of the silent treatment
6. I have offended you
7. You just forgot
8. I am a stupid/annoying/unimportant/obnoxious/ugly/wasteofspace person and no wonder people ignore me and I should just shut up and not contact people because it puts them in the awkward position of just “try and ignore her and maybe she’ll go away”.

    So, for those who never answer I really do spend a lot of time pondering what is going on in your head; when you see a message in whatever form it came in (especially if it is personally addressed to you) and decide to never reply. No really! I am curious because with dead air I can only guess at what is going on with you, and I’m sorry but with my history of where the enemy likes to attack me I am usually going to default to #8. So this is me really and honestly asking the question to those of you on Facebook who I can see have read my IM…..months ago and never replied, and to those who have received texts and never replied, let me know! I have a lot of grace and I am ALWAYS totally cool with “hey sorry, I don’t have time” or if it’s a question just a quick “no”. You aren’t going to hurt my feelings, but please explain the dead air which for the No Replyee is the equivalent of standing in front of you talking and you just staring back not saying a word. It would seem rude right?

Also please have grace for us, the digital communicators. Especially the vast community of us who have endured isolation due to illness and or distance and being able to communicate with our friends digitally is a beam of light in our world.

So. Am I sending this out into the void? Or by chance will a few reply……

beingignored

A tough day

last night I took my first dose of progesterone;  as my doctors are starting to focus on treating the screwed up hormones side of this autoimmune madness. You are supposed to take it at night because it can make you tired, so I thought “yay it will help me sleep”. Alas it did not aid my insomnia but instead left me feeling tired and heavy throughout the first half of the day. Gravity was pulling down so hard not even matcha green tea, an energy drink and 3 shots of coffee helped much. (Yes I am supposed to avoid coffee and have done so successfully for quite a while, but when you’re desperate….) But I was alert enough to pace through at work, and goodness knows I am used to working fatigued.

  Unfortunately what did give me a jolt in the very early afternoon was pure adrenaline, source: verbal abuse. Being reamed and sworn at by someone for something that is not your fault simply because they are having a bad day, and because they have a longstanding pattern of lashing out in anger, bad language, blaming others when things go wrong (whether it is anyone’s fault or not), not listening to explanations (and really not caring to hear truth anyway)…..defaulting to being cruel, condescending, demeaning and sarcastic….( I could go on). Sad the men out there that put down and belittle women in particular, I will say it is not pleasant. What stinks is this causes me real physical harm with my pulse rate, my cortisol, my headaches, my GI issues and my emotional well being.

Sigh. I prayed through being a targeted victim of said person’s rage because I was the closest target, and instead dwelt on the truth……I am stronger. The Lord is on my side and I wear spiritual armor, none can touch me. 

I have been focusing on victory and overcoming lately; in my writing, devotions and prayer life. When the office emptied for lunch I put warfare into action and I took authority over said person’s office space by praising the Lord and claiming His dominion and authority over the physical space and spiritual realm. All is the Lord’s territory. I also put on praise music. It was a great spiritual cleansing both for myself and the space. Evil has no place where the Lord is praised.

I have a better peace tonight then I did earlier, but it is still hard to quickly heal mental and emotional wounds. Of course I need to recognize that we battle not against flesh and blood but against powers and principalities and spiritual forces. And the enemy does use evil selfish people to attack the Lord’s anointed. I am giving this one to the Lord and asking Him to do the fighting for me and take care of me going forward. 

He is my covering as I continue to regain my health and discover where His path leads next.

So my insomnia fatigue and swelling are up right now and GI stuff has been worse the last week, but spiritually I am gaining in the healing game.

  

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.

alone-lonely-girl-beautiful-sad-waiting-seaside

Revisiting Word Press

Hello everyone, I have to remind myself to keep active on WordPress because I find I tend to spend more time posting and sharing articles on Facebook. If you would like you can find my page here   https://www.facebook.com/mycolorislyme

Anyway, rather than just reposting this link and missing everyone on WordPress I decided to come here and share. Here is a great article and some videos that come from overseas about two ladies who suffer from Lyme and their struggles for acknowledgement and treatment. (thank you Lyme Disease UK for sharing)

http://www.dailymail.co.uk/news/article-2845997/The-hidden-epidemic-Thousands-Australians-believed-suffering-Lyme-disease-forced-travel-overseas-seek-treatment-government-continues-dismiss-it.html

Still Swimming

I have been taking the advice of a mighty sage this week,  “Just keep swimming, just keep swimming….” ~Dory

Lol, aren’t we all? Because no matter how we are doing today we are all choosing to keep swimming. This week hasn’t been too bad, now that the little kidney/liver/intestinal crisis is on the mend I have that better sense of well-being back. My usual friends are still hanging around; fatigue, body pain, water retention…. But I am surviving my week feeling a little less drained and I am regaining the desire to do some fun things, and desire actually is a big deal when you have become accustomed to malaise. Why I think I would like to DO something this weekend, yay!

I will keep y’all posted.