I’m Sorry

I have been overwhelmed.

Slowly things are starting to catch up with me. Some of it is physical. My illness is what it is, but sometimes that is overwhelming as well. What is dragging me down, even more though, is emotional.

This is something that rarely gets discussed because of the stigma associated with it. But depression, grief, anxiety…etc. are all very real problems with any chronic illness. Life, all of a sudden, takes on a quality that seems unbearable.

Pain. Fatigue. Failure…. The inability to keep up with peers who are not sick. The invisibility of the disease which acts as a nasty hidden secret, dragging you back, while making others wonder whether you are lazy. It’s depressing. It’s so very defeating.

I hate that I have to struggle and push myself to the breaking point for things that should be easy.

I really just want to sleep.

I really just want a break.

I really just want to give up….

I will admit that there are times I have prayed that God will end my hardships and take me home.

But I continue to fight and battle each day and do my best. I just wish I felt like it was enough.

I am sorry for being negligent with this blog. I am overwhelmed. I know I’m not alone with this feeling though.

 

What Brings You to the Point of Tears?

Recently I was in a lot of pain, but I had to do some work. As I walked along I was struck by a sudden intense wave of pain washing over me. I stopped in my tracks, ready to burst into tears from the intensity of it, and then in a moment of sudden clarity I realized that there was absolutely no point in crying. I was not going to get relief from my tears. I was not going to be free of the pain. Crying was pointless… and that was probably one of the most depressing thoughts that I have had in a while.

So I pushed back my tears and continued on my way. I could feel waves of heat and pain radiate over me. I broke out in a sweat from the effort of trying to be functional through the pain.

I cannot even begin to describe how much pain, along with how many days of dealing with said pain, it takes to come to the realization that there is no point in acknowledging it. There have been days where I have been hunched in the fetal position, rocking back and forth, and moaning from the pain and still haven’t cried. There have also been times where I have literally screamed out from pain and yet? No tears.

So what does make me cry? Frustration.

I won’t cry from the pain, but occasionally I cry because I cannot stop the pain. The fact that pain is such a large and agonizing presence in my life and yet I cannot do anything to help alleviate it is sometimes crushing. This isn’t helped by the fact that there is very little treatment for pain. Often the only treatment is simply to attempt to mask the pain and I am terrified to seek out that type of treatment for fear of being called a drug-seeker. I am beyond frustrated with the fact that people who use pain medication for illegal purposes have an easier time at getting the medication than I would for its medicinal purposes since I’m not the one who is willing to buy or take prescription drugs illegally.

There have been a few times, however, when I have asked for something to help me get past the pain. To be fair though, there has only been one time and the immediate response was, “I can’t give you anything”. I had to go from an urgent care clinic to the E.R.  (both of which were affiliated with the same hospital) in order for someone to take me seriously. A nurse literally walked me from the clinic office to the E.R. department. I was incredibly frustrated (yes, I did burst into tears then).

I am not quite sure how to survive with this amount of pain, this frequently, with such little support. I can only think about it in the present, as each new event occurs, because if I consider it as a culmination of events that have happened in the past and that will most likely happen again in the near future…

I just cannot bear it.

5 Realities of Living With a Chronic Illness

Don’t hate me for being one of “those people” but I’m going to jump on the “The Fault In Our Stars” bandwagon here. I know that many people have fallen in love with this book/movie and that even if they can’t relate as well with the characters, they can live through their stories and appreciate it. After all, who doesn’t love a good “sick person” story every now and then? And there certainly has been an increasing number of them coming out lately (personally, I want to watch Red Band Society). They make good stories after all. As long as the average person can put it down or turn it off at the end of the day and return to normal daily life.

For me, however, these stories tend to really hit home. There are so many messages in it that the chronic illness community has been trying to espouse for years now:

  1. We are NOT inspirations for the simple fact that we EXIST. This is the basic function of life. Existing. You might as well find a virus inspirational. After all, they exist without even being alive. Now that’s talent! Seriously though, just because life happened to give me a different challenge than it gave you, and just because you can’t imagine yourself with my particular challenge, does NOT mean that I am inspirational for dealing with it.
  2. We ARE excluded. We are looked at strangely. We are avoided. We are talked around. We are talked about. We are so many things that you THINK we don’t know about. I know why the elderly couple in the waiting room keeps glancing at the strange 20- something young adult and whispering in hushed tones. I know why I’m given the shocked looks when the nurse calls my name and I actually stand up and follow her. I know that my co-workers talk behind my back about all my call-offs and doctor appointments. I know what that worried glance means when I’m sitting or laying on the floor in a public place. As if you’ll actually be required to step in and do something. And how distinctly uncomfortable my pain is to you.
  3. Are we worth it? This is a thought that often runs through our minds every day, multiple times a day. “Great, he has this sick pathetic person as a mate. He must hate what I have become. I am such a burden.” How can we not think that? Doctor appointments aren’t fun. Would you want to go to them weekly? We don’t. We certainly worry that our friends and families don’t either. I go through phases where I just want to hole up and hide. Don’t look at me. I’m shameful. I want to be sick in private. It’s my own personal shame that others shouldn’t be subjected to.
  4. There is pain. There is always pain. I may look at you and say I am feeling fine and dandy and that today is a perfect day…but… that is only because I am referencing it to another day that wasn’t as fine or dandy. A day that was hell and that makes this day look like a warm cheery bonfire. My scales are different from another person’s. If you lived in pain every day, you would start rating a normal 2-3 as a 0 or 1. After all this is the baseline. This is the normal. Also, this goes back to #3. If we are feeling particularly insecure about our illness, we will hide how it affects us.
  5. There is fear. There is always fear. Chronic illnesses are uncharted territories. There is no easy guaranteed course that our disease will take. There is no promises that once A happens, it will lead to B, then C is next…etc. All there is, is a big huge UNKNOWN. And that is freaking terrifying. Many people try to comfort us by saying crap like “well I could get hit by a bus any day” or “We’re all dying”. It. Is. Not. The. Same. I’m facing dying by a lingering possibly progressive, painful disease. I’ll take the bus next life-time.

There is so much involved in being sick and the longer you’re sick, the more there is to deal with. Living with a chronic illness has a huge learning curve and there is a lot to get used to. Often times you are faced with the choice of not telling anyone that you are sick, in order to be treated normally, or telling people and then living with the stigma of “being sick”. That’s not an easy decision to make.

Perspective…

…is everything.

Every now and then I feel as if my body is breaking down on me. I seem to be experiencing new and terrifying symptoms every two weeks of late. With these new symptoms, I am faced with a choice of whether I seek medical attention for them or choose to ignore them. Because of my biology degree, I have just enough information to be dangerous to myself. This is only exacerbated by the fact that I am exceedingly stubborn. So the latest symptom that would send any normal intelligent person to their doctor is the fact that I had brown urine. This could be from any number of scary terrifying reasons, but because of the bloodwork I had about two weeks ago and my biology background, I feel like I can ignore it for the time being. I am prone to thinking that it’s either extreme dehydration, or is a result of increased CK levels (which I have had in the past). This intermittent symptom, coupled with the fact that I am having trouble waking up to my alarm these days, makes me feel betrayed. Like I said earlier, I feel as if my body is breaking down on me. I feel like it is being stealthy about it too…. little pieces that tear apart and disappear. Almost like they were never there. I say it’s sneaky, because the medical tests will hint at it, show evidence of it, and then be perfectly normal again. Anemic one day, fine the next. Muscle death yesterday, just dandy today. Ketones and protein in urine last week, only to disappear the next week. I find this incredibly annoying. If my body is going to treat me like crap and if I am going to suffer the symptoms of it, I’d like to get to the root cause. I want treatment! And I can only get that, if we stop this irritating game of “hide-and-seek”. 

But like I said earlier: Perspective is everything. I have seen people whose bodies are TRULY breaking down. They make what I suffer with look like a walk in the park. Sometimes I view this with: “Hey! My pain is pain and I deserve to get upset about it!” And I do. I do have that right to be upset, because what I’m dealing with does suck and it’s not something that can or should be compared. But sometimes I view the fact that others suffer worse symptoms with: “I REALLY appreciate what I have, even if it is hard for me at times.” And again, I do. I am so grateful for the health I do have. For the support I have. For the medical insurance I have. For the family I have. With any given day, my perspective may change. One day I may cry and rage at the unfairness and the next day I may thank God for the gifts I have been given. I believe that this change in perspective is just something that tags along with chronic illnesses. I’m almost positive that every patient out there probably can empathize with what I’ve written here.