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A Public Letter to Everyone who asks "Are you better now?"

1/25/2014

2 Comments

 
There is a question I know a lot of people have in their mind. They might ask me, but the answer is so long (on my end), that I usually don't answer in much detail. In fact, I'm sure this question pertains to a lot of you who are in a transition phase with this disease. The point where you are slowly starting to get better, but you still aren't quite back to your normal life just yet. The point where you can do more, so people start to ask you "Are you better now then?" or "So when are you moving back to your own place?"

It's a weird question to answer because to those who don't quite understand the daily workings of life with an illness it makes no sense to them, and I totally get that. After 2 years of being at home in treatment it's difficult to grasp why I am more active but not necessarily back to my old life. So I wanted to shed a bit of light on that question and answer that. Hopefully this can be helpful to some of you guys as well.

When I lived on my own I did everything for myself every single day. I would wake up at a decent hour, shower, have breakfast, take care of my dog, go to work, run errands, do my laundry, make lunch, cook dinner, clean up, go out with friends, etc. The list could go on and on. You know what I mean, all the normal stuff people do from 8am-10pm. Before I moved home I was doing these things but I was killing myself in the process. It took every ounce of energy and I would end up skipping out on important things like eating (I didn't have the energy to cook), or sleep (I wore myself out so much I was too much pain to sleep). I totally and completely was running on fumes, and when I moved home I crashed.

I became 100% dependent on my parents. I am not exaggerating when I say I spent 99.9% of my time in bed. I would get up to walk to the restroom and that's where it ended. My parents cooked for me, and brought the food to me in bed. They did my laundry, my mom washed my hair, they changed my bed sheets, they took care of my dog, they ran my errands, they basically were the only reason I had a life. I might have made it seem easy, but it wasn't. My parents were my absolute life line and basically all I did was lay there and just breathe.

As I have gotten a hair better this role has changed. I am much more active in general today than I was a year ago. But I have a secret for you all.. I can do all these "extra curricular" things because my parents still do my basics like doing my laundry, my sheets, and cook my meals. While I do eat dinner downstairs with my family once in a blue moon, I still have breakfast/lunch in bed, and they still take care of my dog. It helps me conserve my energy by them helping me out in those ways so that I can use my energy in places that bring me joy.

So you see, after 2 long years battling this illness I am using my "extra" energy I have now on doing things that make me finally happy, and I can do that because my parents still do the vital essential things for me to make that possible. If it wasn't for them I wouldn't remember to take my giant list of medicines at specific times, and I wouldn't get so many basic things accomplished. And because I still lean on them so much that is the big answer as to why I am not back in my normal life. I won't be able to have my "old" life back until I can complete every last task on my own with 0 assistance or need for rest breaks from 9am-9pm. I need to be able to do this and more before I try to branch out on my own. I need to be able to do this day in and day out for weeks without any setbacks before I will feel comfortable to take the next step. It honestly isn't worth pushing myself and relapsing into a horrible state again. I've been there and I refuse to do it again just to save face or save my ego.

The second reason, which is the obvious reason, is that I am not 100% health wise. My grandmothers intensely & emotionally draining passing really put me back in a big way health wise. I just could not handle the stress. At least my body couldn't. I thought I was handling it like a pro, and then a week later it was a giant crash throughout my whole body. This is definitely NOT a sign of a fully functioning person. Not to mention I still will have a few days where I am doing okay and then out of the blue I have a flare so intense that I am back to my bed bound self in the fetal position unmovable for a few days. It comes as quickly as it goes, and during those times I am more dependent than ever on my parents.

This scenario can go for anyone who has a caretaker, be it a spouse, a friend, a relative, etc. Whoever is helping you to function now is the reason why you are beating this disease. It feels so weird to not be this independent soul like I used to be, but in my heart I have lots of energy and lots of hope. I know where I am at now, and I can complain all day about how awful it is, but when I compare it to my lowest I was ever at it just makes me appreciate that I'm not there. Anywhere but THERE.

So friends, there is the answer. I do a lot more, but I do it because my parents pick up my pieces. I do it with many frequent and long
rests throughout the day. But one day soon enough I will do it without having a crutch and I will have my independence back that I miss so terribly. And for anyone else who feels the need to explain their status, I hope this post can provide insight to those who need it.

When you get diagnosed with a chronic illness you turn into a bit of a hermit. Life shifts to a new place where you just focus on getting through the day however possible. You try to get your medicines in, you try to choke your food down, and you save energy for 3 days to shower. When you slowly start to feel somewhat better those moments of clarity are such an amazing blessing, but it's a long road to being back to what people consider to be normal. My fuse is shorter and it burns out quicker. But with each day it's growing, and although the transition is slow it's one that I can see is surely happening.

xoxo,
Christina
2 Comments

The Purpose of Hope

1/15/2014

4 Comments

 
I think that hope is a funny thing. It's not tangible, but yet we hold onto it as if it were. Hope keeps people going despite the most grim circumstances, even if they can't see it. Think about that for a moment.. Just the thought of something (not guaranteed) can drive a person to do or not do something. When it's broken down like that it sounds like such madness... But truth be told, hope is at the same time single-handedly the best thing we have in this world.

There isn't a magical promise from a fairy that tells me I will be okay one day... It's hope, and my belief in God that leads me to believe that. I have hope that I will be able to drive again without neurological issues, I have hope that one day I will have a normal functioning stomach that digests everything without pain, and I have hope that I can lead a normal life that doesn't include thinking about Lyme disease 24/7. If you don't have hope then what do you have? Sorrow?
It's a dangerous thing for us to lose hope. In the last year I have heard story after story of Lyme warriors who lost theirs and ultimately gave up the fight of constant pain. It baffles me how this disease can be SO debilitating but at the same time so largely ignored. It's hard to have hope when you need to see 100 doctors over the course of years before you get a proper diagnosis. It's hard to have hope when you do finally get your diagnosis and you find out there is no cure for it yet. It's hard to have hope when the pain gets to bad and your local ER sends you away or treats you like an addict, mocking your disease as inauthentic. This disease creates all the most hope sucking situations, until you don't even know what direction to go anymore. I've seen this scenario time after time.

Those of us who do fight this disease need to fight loudly until the right people listen, and change can happen. For 2014 I urge each of you to do 1 thing each month in terms of education or advocation. Just 1. It can be as simple as reaching out to someone you know is outdoorsy and equipping them with proper information about ticks & prevention. It doesn't have to be anything large scale. Together we can restore hope to those who have lost it or those who are slowly fighting a losing battle to keep fighting.

We are all in this together
Xoxo,
Christina


4 Comments

Here's to 2014

1/2/2014

2 Comments

 
They say that the New Year brings new starts. I don't know that I have ever believed that more then I do now. I'm not a superstitious person or someone who ever used to tie events to years in the past. But truly, 2013 was full of heartache & pain not just for myself but for the people around me I love the most. It's hard to go through tough times, but when you see those you care about hurting it's almost always worst.

I will never forget a conversation my mom had with a friend of ours about this topic. It was December 12th and we were discussing how ready we were for 2013 to be over. I distinctly remember her saying, "there are only 2 weeks or so left of this year, lets just hope nothing else bad happens in that short time."

It was a comment I took in stride, thinking there is no way this year could get any worst. The next night my grandmother who lives with us fell very ill & after a long battle passed away on December 27th.

Yes, 2013 COULD indeed get worst and deliver its final punch faster than I could blink. When I sat down & watched the countdown on New Year's Eve I was so anxious to put last year far far behind me. Those of you following along on this blog know many of the personal struggles that have ensued. It's been a true test of God's grace to give me the strength to cope without completely falling apart.

All in all I'm ready for a fresh start, and I believe in God's love and the fact that things will be much better. These last 2 weeks I have felt pretty bad, in comparison to how I was feeling before. However January 1st was an absolutely marvelous health day. Full on appetite, more energy than I have had in weeks, and high spirits. I think God was trying to give me hope, and say "yes Christina, this will be better, here is your fresh start."

For 2014 I strive to fight harder than I ever have before. My sweet grandmother was a fighter through & through. She battled breast cancer twice & won, and ultimately lost the fight to liver cancer. Although she was very very sick for weeks before she passed she never showed it. She refused to tell us how she really felt because she did not want my mom to take her attention away from me and my health needs. What a selfless & amazing woman she is. She silently suffered every day, slowly deteriorating but you wouldn't ever know. Not a peep. By the time she landed in the hospital things were just too far gone to save her, and that says a lot about her character. Any one of us would be doubled over in pain crying with what she was dealing with. And she did it for me, so that I could get the support & stay focused on recovery. She loved me that much, and it makes me emotional every time I wrap my mind around it.
So for her I will fight like I've never fought before. I will beat this for her, because that's all she ever wanted is to see me healthy again. 2014 is for you grandma, thank you for being such a perfect example of strength & courage.

Xoxo,

Christina
2 Comments

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