Apparently my ability to keep consistent writing is lacking tremendously.
For those of you who are just tuning in, this is my blog for sharing my journey through life as a "sick" person. A safe place where I can vent about the pains, symptoms and side effects I experience while I live with Chronic kidney disease, Wegener's Granulomatosis and iron deficient anemia. Bluntly put, they all suck, they all cause a laundry list of issues and the most common denominator of them all....they're invisible to the human eye, meaning that no one can see it, and talking about it just sounds like complaining.
Here's a little history on the issues at hand:
Wegener's - uncommon disease that inflames blood vessels and thus restricts blood flow to organs. Most commonly kidneys and lungs which I had the un-pleasure of experiencing. Which bring me to...
Chronic Kidney disease - pretty self explanatory, but basically your kidneys are you filter for a lot of things and with kidney disease, it loses it's ability to filter and thus you get a build up of trash your body shouldn't have in it. I was in renal failure but was successful with 3 very strong treatments and have been in remission though it's like a roller coaster of good and bad days.
Anemia - my body hates iron, in fact it hates it so much that I am now on my THIRD round of venofer treatments through IV because it's the only way it seems to stay for any amount of time. I have to keep going every two weeks until my ferritin reaches 200...it's currently at 12 (started at 6).
So now that you're up to date on the science of my pain, let me do what I came here to do...vent. The symptoms of all three diseases are annoying to put it simply. They are constant and irritating, they hinder day to day life yet they remain just under any radar of actually showing much for signs thus giving people a pretty good impression that I'm not "that" sick, and I'm probably just coming off as an extremely bad hypochondriac or that I just want attention. I can tell you from my early teenage years as a hypochondriac, I am definitely not faking this now.
The worst thing of all of them is the fatigue. Most people on a day to day basis are tired, I totally get that. Fatigue related to illness however is much different. And I had a baby and went through weeks of sleeplessness so I feel like I can say that fairly. Imagine getting 12-14 hours of sleep a night, having an hour-2 hours nap during the day and still being tired. And I mean your whole body is tired, your mind is always foggy and memory starts to get really bad. It's like you're carrying lead weights around your ankles all day. No matter what vitamins you take, or how much sleep and rest you get, you are just a walking zombie. It is so frustrating because I try to be quite active and it takes the fun away when I feel like I'm just trying to "get through it" so I can sleep. I fall asleep during movies. And it makes me really grumpy which for those around me can tell you, it's not very nice.
I feel like I am always yelling and always thinking about how nice it would feel to just lay down. It's really hard going through this one because it dramatically affects my mood and ability to keep up and have fun in things I once used to do without effort.
The rest of the symptoms are things like weakness, sore joints, water retention, sleeplessness, headaches, appetite ups and downs, weight gain, weight loss....etc. etc. They may seem like such little things but when you put them all together, it feels like I would be better off in a cabin in the woods all alone where no one has to "deal with me". I feel like most times people try and avoid eye contact because you never know if my mood is up or down. That's the worst part of all, feeling so much at once and no matter how hard I try, I can't "snap out of it" when I'm in a mood.
I feel like I am annoying and hurting those I love, and making people feel like I don't care about them because I am terrible keeping in contact with people because I'm always too tired or sore etc. to talk. My memory is terrible and makes it seem like I don't listen and thus don't care. None of these are me. I had a great memory before, I could sleep very little and still have great days. I smiled more and worried much less. I guess what I feel is that I'm no longer me. I'm a different version of myself and there's no treatments for anything I have other than iron pills and vitamins. It's a lonely feeling when you are sick and nothing is significant enough for people to understand.
So for those who may read this, the people I love, I hope they understand that I know what is wrong, and I'm trying to figure out a better way to manage it, but I'm really tired too so it's taking a little while. I'm still in this body somewhere, I am just trying to get through to her.
No comments:
Post a Comment