Invisible illness $ who’s body is this?
Its so hard at times, when no one understands the suffering and challenges you go through… Because so much of it is invisible. And so much of it is putting on a face and pushing through the pain and that crippling fatigue. People that haven’t had anything but good health don’t seem to understand how hard it is for us limited energy folks to do the smallest tasks… No matter how “good we look”… Doesn’t mean our insides aren’t yelling.
When your body hurts, your anxieties are high, naturally, because that’s a biological response. Which makes things like going to the store, an extra challenge. And it really sucks that just simple things turn into things that cause huge exhaustion and anxiety because we are navigating in bodies that refuse to cooperate!!!
It is taking some time, but I am learning how to live with this body of mine. It changed everything in my life, not one thing untouched by this illness. So I have to rebuild my life, as I learn my body all over again. My dreams and goals are changed. Everything is different….. And some days I am tired of the flack I feel for having emotions over all this. It’s grief for Christ’s sake. Like all that isn’t enough… I worry about how my health affects my children’s life, every second of the day. They worry about me and the makes me feel so guilty. Makes me want to hide what’s really going on, more than I honestly have lately. I hate what this does to everyone around me. It’s not at all, all about me. My sadness and hurt come from the burden I place on others by just being me, and having what I have.
February 28, 2014 at 8:58am
Remission! Say what!? Update 2/28/14
Its been awhile since I visited the Land O’ Tumblr… And I guess some things have gone down since so maybe an update is in order.
Scans show that my treatment is working…. Finally. After ELEVEN months of hard core treatment, being placed on hospice, and left with little hope… I am finally kicking some cancer booty! A few months ago we added another chemo med that I get every 3 weeks. But I’ve cut down on the oral chemo I take everyday. I’ve had a few Proton radiation treatments in the last few months, and am trying hard to stick with my treatment map. Blood work is looking better than it has during this whole process. My white blood cells run very low, and I run anemic, but the time between blood transfusions is getting longer, so my bone marrow, despite it being “tired” is holding strong and bouncing back.
Oh, right back on the remission subject… My tumors have shrunk… Only a smidge but it is something right? I am still not qualified for surgery, due to where the main mass is located (pancreas, closer to the head but a little more centered… Maybe I can find a clear picture to post) and the blood vessels involved. I haven’t given up that one day it may be possible… You have to carry some kind of hope…
Physically, I’m struggling. I’m losing weight more and more and the struggle to put anything on or even maintain my current weight is an agonizing struggle all day, everyday. My feeding tube was taken out in August, and I have avoided one since. When I first had my onset of symptoms, back in November 2012,I was between 138-142 pounds. By January 2013 I was 115. Now I struggle very hard to stay above 105 pounds. Yesterday’s weight was 102.3… It’s just devastating to me… Because through this all I am trying to LIVE… I am trying to set an example for my kids and fight as hard as I can… And to get no where, makes me feel defeated on the daily. If it wasn’t for the good news that my hard work and all those prayers are paying off… Enough to at least buy me time, has kept me from losing my last bit of hope.
We do have to handle my weight and GI issues. I want to go back to work part time and there is no way I’m going until I am strong and stable… And know I have the stamina. I worked in a skilled nursing center, and dream about returning.. I have the best coworkers and support system there, I feel very blessed.
People think I’m crazy… “She was told she was terminal a year ago and wants to do what???”…. But without my job, without the ability to serve others, I feel very lost. I think finding a healthy but productive pace will pay off, and I will be back doing what I love. Some say delusional, some say crazy… (there’s probably a bit of both lol) But no one got anywhere without a vision… It was brought up to me to look into becoming an Ombudsman… I have the empathy from my experience with my medical issues, I have ten years of serving the elderly and disabled, I have drive and the fire to help and advocate for people… Who knows… All I know is I am not done yet. Everyday I leave an impression on my kids hearts, on their memories, and I want it to be a good one. Cancer is so ugly, the way it doesn’t just destroy your health, it destroys families… So I am motivated to not let it take more from me than it already has, and make the most of every second.
(Remission is defined as having control over the cancer, often mistaken for being cured. Remission doesn’t mean the cancer is gone, just controlled.)
Most importantly: you’re stronger than you think.
WHY DOES THIS NOT HAVE MORE NOTES
wow, this is
1. push yourself to get up before the rest of the world - start with 7am, then 6am, then 5:30am. go to the nearest hill with a big coat and a scarf and watch the sun rise.
2. push yourself to fall asleep earlier - start with 11pm, then 10pm, then 9pm. wake up in the morning feeling…
You’re the only one who knows when you’re using things to protect yourself and keep your ego together and when you’re opening and letting things fall apart, letting the world come as it is - working with it rather than struggling against it. You’re the only one who knows.
— Pema Chodron (via huonger)
Riding the Crazy Train
Depression is a demon a lot of people face at some point, and especially so, the chronically ill.
Since about May of last year, I get an extreme flare up in symptoms, usually starts with some neck pain, dizziness and a weird headache aside from all the other types of headaches I’ve experienced. To be honest, it almost feels like being drunk off of cheap liquor.
But the worst symptom it always comes with is an extreme low. They don’t last long, the worst is I’m in a funk for a day, but when it hits it.. Hurts like hell. I know that this is a response from my body, a surge of chemical responses to pain. Look at how an injured animal acts. My very sweet kitten was quite mean when she hurt her ankle falling out of the tree. We are animals. We have instincts. We aren’t above this.
I have a problem with control so when this hits every so often, I get extra down on myself. I have done so well so when these flare ups hit it feels like a step back. An unfriendly push.
The hardest part is the judgement. There are far too many people that just don’t see the whole picture. They don’t see the whole struggle and base their opinions on very little. They don’t see how hard I try, the loving & giving person I am… (not to sound full of myself) but I am in no way a monster….. I suppose I need to learn to let go of those people that don’t understand that my ride on the crazy train is not voluntary…! ;)
I’m doing the best with what I’ve got.
I have been pushing through with a smile, for the most part, but lately my fears are running wild. The dizziness scares me, and the lack of being able to eat without pain. I have also had some new pains, mostly around my ribcage but it radiates through to my back. My numbers have been off and hard to keep up without the neupogen shots or transfusions. The shots themselves give me pain. Still avoiding most pain meds though… And this week there is no chemo, I have a bone marrow biopsy Friday, so I am welcoming the prayers, and trying not to think of the worst…. We got to enjoy the sun yesterday so that helped the spirit a bit but wore me out! Some days it’s so hard to tell if I am getting better or worse or just not going anywhere. The stomach pain and fullness is Worrisome so more tests soon. Thanks for the prayers!
Some days are so hard. I want this to end. I want better for my children. I want a life without doctors and specialists. I am tired of the worry and anxiety that comes with sleepless nights and too much thinking… But I am grateful. I am very blessed with some very awesome people that make this journey a little easier on me. Us. Thank you all. #keeponswimming
Illness isn’t always visible or obvious. Sometimes people can look healthy on the outside, but be dying on the inside.
My name is Whitney, and I have battled with invisible illnesses.
I have more illnesses and diseases than I can even count.
I have been chronically sick for 5 years, and bed bound/ feeding tube dependent for the last 2.
For the first few years of my illness, I spent SO much time hiding the physical signs of my illness. Spending so much time on my make up to hide the effects of the illnesses on my appearance, spending what little money I had on wigs and extensions to hide my balding and thinning hair, and wasting my precious energy in attempts to prevent the inevitable…
Because in everyone else’s mind, if you looked normal/pretty, you weren’t sick….and I tried SOO hard to believe that and make it come true.
Obviously, as my illness got worse, I cared less and less about my appearance. As of late, I’m so sick I can’t even bathe without assistance. I had posted the picture on the right on instagram, and received the comment “ Y would you post a picture like. this you look like shit, do you know that?”
I have heard plenty of comments like that before. People wondering why I don’t do things about my appearance, pointing out how extremely pale I look, notice the bags under my eyes and tell me to get more sleep, suggest eating a hamburger due to how skinny I am, I’ve even had people question WHY I take pictures while I’m so sick, in the hospital, etc, and post them to social media, and why I don’t just wait until I’m better..
Because this is my life.
The picture on the right (no make up, sickly looking) is me. It is my life. I wake up in pain. My schedule revolves around pills. I see doctors more than my friends. I’ve had more surgeries than you’ve attended school years.
I take pictures while I’m sick because I will not give up. I’m not going to “wait” until I’m better or “pretty” to ‘live life’. I will document this difficult time of my life through pictures, social media and however else I feel necessary.
The first picture (full face of make up, healthy looking) was taken 4 days AFTER the other. It was 4 am, I was in too much pain too sleep, and all the comments about my appearance had finally gotten to me. I got out of bed and did a full face of make up. Before I got sick, I did that routine everyday in record time, without blinking an eye. It only took 30 minutes this night, but it took every ounce of energy that I had.
I looked in the mirror and was overwhelmed with sadness. My pain was still there. My illnesses had not magically disappeared, and the migraine that had kept me from sleeping was still pounding against my skull.
But I looked healthy. I looked fine. And according to everyone else, a little make up, and I would be cured. Things would be better. I knew it wasn’t true, but it was still unusually difficult to stare at the healthy looking girl in the mirror and know the true horror that was going on inside her body.
That is what having an invisible illness feels like. You look fine on the outside, but you know the truth. When YOU look in the mirror, you see the real reflection; the pain, the endless symptoms, medications, the real you. That behind the seamlessly normal facade, your body is literally killing itself.
Having an invisible illness is incredibly difficult. If you know someone fighting this type of illness, please be understanding. Don’t belittle their pain due to lack of physical symptoms or outward appearance. Don’t ask them to change their appearance, or actions just to make you comfortable, because you have no idea how difficult it may be for them. But most of all, just be there for them. Be a friend. Try to understand, be there for the hard times, and be there for the good times. Just be there, because they need you more than you could ever know.
I was born with an enormous need for affection, and a terrible need to give it.
— Audrey Hepburn (via lovely1950s)
(Source: wordsthat-speak, via praesens)