A Lyme Disease Blog Sharing Support & Awareness

What's Your Gratitude?

7/25/2013

Recently I noticed something great that I saw on twitter which I wanted to share here. A lady that I follow does something called "evening gratitude," where she reflects on things she was happy about that day. It can be something as simple as that cup of Earl Gray tea you had, or a movie that lifted your spirits. She had no idea I'm sure that her positive attitude was rubbing off in the way it did, but I just adored that idea. It made my heart happy to read her gratitude, and reminded me of life's beautiful moments which often go unnoticed.

When you have any chronic illness you begin to cherish the small moments of life. Sometimes though, amidst the pain, we can forget to still be grateful for it. When you write down or say your evening gratitudes before going to bed you are ending your day on a positive note. Continually doing this seems to cross over into the next day & so on and so forth. It's a small gesture, but I think everyone, healthy or not can benefit from it.

My evening gratitude: a surprise Edible Arrangement, finding something I thought I had lost, & noticing the sunset this evening.

And for yesterday's gratitude ... I AM OFFICIALLY C DIFF NEGATIVE! I've been fighting this since January & I can't be happier to actually see test say negative. Very very grateful. God is good.

Xoxo,
Christina

2 Comments

Overdue Update! Vision Therapy, IV's & The Power of Prayer

7/21/2013

2 Comments

Oh boy.. Lots to update! I'm going to try & just get to the point and summarize a bit so it's not overwhelmingly boring!

Vision/motion sickness issues that stem from my brain damage have been the core of what I'm focusing on tackling.. Mostly because it hasn't budged during treatment and that is incredibly frustrating to me. My type A personality means I NEED to know why it's not getting better & I need to investigate. So, investigate I did. About 2 years ago I saw a vision specialist who found the brain damage & other eye issues, but at the time he believed it was caused by Lyme & co-infections. As I was treated for those he believed it would improve. Since it hasn't, I started revisiting this issue. In summary we found a very smart doctor locally who does the same eye testing & what he found was interesting. My eyes have a convergence issue. Where as you see the world by your two eyes taking separate images & combining them in unison, my eyes can't do that. I actually have double vision, but my brain overcompensates for that & just shuts off one eye instead of dealing with seeing two. Since my brain can't converge the two images properly I should see double, but to counteract that it decides to simply switch off an eye. At any given moment my eyes are rapidly switching back & forth from left to right eye and trying to mesh it together as best it can. That's how I see the world & why everything makes me very sick. Too much time on my phone or computer (more than 10 minutes at once) makes me sick, writing in my journal makes me sick, and the list goes on. But, now I understand why.

So what now? I will begin a rigorous vision therapy this coming week which should re-train my eyes. I'm nervous because I know it will be painful & hard to get through, but I just have to take life as it comes. Many prayers would be appreciated that this will help my neurological issues by leaps & bounds.

In closing I must say that often times when my life is in chaos like it is now, I tend to take on the worry myself instead of putting it into God's hands. It's almost a reflex to feel anxious because God seems to wait until the last final minute to work his miracles. I know it must be a way of teaching me patience & trust, but I am a terrible learner. I have some things coming up in a few weeks which has been overwhelming me, and I have been asking God to give me a sign that everything will be okay. About a day later I had something happen I had been praying for a long time. It was something small, but I knew it was an indicator that I have to keep trusting him.

Xoxo,
Christina

2 Comments

Being Sick Is a Full Time Job

7/10/2013

4 Comments

When you have a chronic illness and it's easy to assume its relaxing... or somehow you have all the time in the world. I think people imagine me just lounging all day and that is it. Which can not be further from the truth. Being sick is actually a full time job. Actually, getting well is a full time job. I find myself forgetting to reply to emails, texts, calls, or 100 other things because even though I'm not "busy" per say by the worlds standards, I am actually really busy in my standards. I start to do one thing & then an alarm goes off "time for Vision Therapy" and I get side-tracked somewhere else. It's like being pulled a million different ways.

For starters my day is off tilt from most people's because I need a good 10-12 hours to be rested. My body craves sleep, the fatigue with Lyme will kick your booty. Ridiculous right? But from the moment I get up I have a lot to get accomplished. My two most important things are; 1. Getting in the calories I need to keep my weight up because I have an insanely fast metabolism. 2. Getting in 2 or 2.5 liters of water. It is SO crucial to stay hydrated. These in itself are harder then it seems because I have to almost constantly be consciously remembering to eat or drink all day.

So next, my day has a LOT of supplements, Physical Therapy, Vision Therapy, Detox baths, Medicines, Electrolytes etc that have to be meticulously planned. Some things have to be taken at certain times of the day, others have to be done with food or without food etc. Pretty much my whole day upon waking is going from one thing to the other.

Not to mention all the regular things in life we do. That includes errands, jobs, taking care of pets etc. That all has to be fit into my day no matter how much energy I do or don't have.

Lastly, you have to calculate in Doctor's appointments. I have a nurse that will come, get vitals, do blood work, give me an IV, etc. I also have days when I have to see a doctor and that takes up a big chunk of my time. On the flip side I spend a lot of time researching and reading up on things to better my health, so that lumps into this because I spend easily an hour a day on that alone.

I just thought it would be good to clarify that being sick is truly a full time job. It's easy to think that people who are sick lay around all day with NOTHING better to do. That can not be further from the truth. I am always taking something, doing something, or gaining energy to move. I obviously do have down time, but down time is a double edged sword. I have a very anxious mind, so I need to stay busy just to keep my mind busy & off the pain. If you don't stay busy at least on the surface you can't help but think about the pain and it can consume you.

When I do find time to do things I enjoy like spend time by the pool, or sit outside to read, it basically means I have to take 50 things with me to do in the process so I don't get off track. I need to remember to take out this supplement, that medicine, and a timer has to be set to go in at a certain time for whatever next is scheduled. So there isn't really a worry free period where I can just say "who cares for 3 hours what I do." Probably the only real down time I have is at night if I have insomnia... but at that point there isn't much fun in being awake at 2am!

I'm sure I left something out in all of that, and it may come off as a complaint, but it isn't intended to be. Right now I know my job is to fight with all I have, and that means taking impeccable care of my body. If I have to operate like a robot and do all these things then I will do it. I am 100% committed to getting well, and I am happy to do anything. Don't get me wrong, some days I get so tired of it, and I just want to throw in the towel because I feel overwhelmed..But who doesn't have those days? Overall, I'm not angry that I have to do these things, but it is important for people to understand it so I had to put it out there. Any kind of chronic illness takes a lot out of a person. It's not a walk in the park to have your life dictated by a disease.

So if you have a loved one who is battling a chronic illness, then give them a break. Don't make assumptions on their day until you have lived it yourself, and always ask if you can help. People have assumed that I should be doing more, reaching out more, remembering more things etc because I just "lay around all day." True, I do have the TV on all day and my phone with me all day, but untrue that I am sitting beside it every waking second. True, when people ask me what I'm doing I usually defer to saying "nothing" or making it seem like I'm just relaxing, but untrue that it means I am doing only that. It's easier to say I'm watching TV then try to explain I'm trying to choke down my daily vitamins but I'm having trouble because I'm too nauseous to do it. I suppose it's my fault when I omit info, but I also speak to my friends to ESCAPE the life I'm in at home, so I'm not in the mood to chat about supplements.

This was long.... but I hope it made sense. I have a board by my bed with the things I do daily. Mind you, there isnt enough room to fit them individually so a lot of spaces have a few things combined or left off.. It's truly madness. However, I do recommend these cute boards for any fellow Lyme warrior. It helps organize life a bit :)

(It's horrible quality, but you get the picture)

Xoxo,

Christina

4 Comments

What's Your Gratitude?

Overdue Update! Vision Therapy, IV's & The Power of Prayer

Being Sick Is a Full Time Job

Follow Lady Of Lyme (@ladyoflyme)

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What's Your Gratitude?

Overdue Update! Vision Therapy, IV's & The Power of Prayer

Being Sick Is a Full Time Job

Follow Lady Of Lyme (@ladyoflyme)

Categories

﻿Archives﻿

Archives