Learning About chronic illness? More like living it...

I didn't wake up well rested like I hoped for. I woke up to my alarm at 7 am, lay down for what I thought would be five minutes, completely slept through my second alarm (no recollection of it going off at all) and slept straight til almost nine. It was an effort just to force my eyelids open and an ongoing battle to throughout the day to keep awake. I am exhausted. My whole body is tired, all the way down to my toes. I don't know how to describe it. It is worse than fatigue. It is all encompassing. That sounds dramatic, but that is not my intention. That is how it feels. It is horrible. It this the bone infection? Is this the antibiotics? Or is it both? I am eating healthy, getting enough sleep, exercising (walking every day, started doing yoga), but I am still fried.

The first class for Health and Healing 2 was this morning. The entire course is about chronic illness. The irony is not lost on me. For next weeks class the homework asks us to get a basic understanding of chronic illness and how it effects people. Our unit package asks us to consider qeustions like

"Identify the impact of a chronic health condition on a client’s life," and 

 

"What do you think would be the goals for a client with a chronic condition?"

My whole life has been impacted - always being 'the girl who is ill' in the class, taking time off for doctors appointments, scans, surgeries, being sick. Several surgeries in highschool/university. Not playing sports because of the infection. Always being tired - not having energy to hang out with friends, to get boyfriends and go to parties and weekends out. Balancing school and being ill, getting through the ill and not having energy for  anything else. Not planning for the future. And then recovering and getting my life back, being so happy and confident and excited, not only dreaming but planning. Doing! But then relapse happened, and going back to the way it used to be...   Goals are not marriage or vacations or careers. They are waking up feeling rested, not hurting, getting better. And fortunately I still have school. I can still do that and I love it.

We will be out into groups to share our answers. I don't want to share my experiences - they are personal and painful. I don't want to hear what other students say - invincible, impervious to the world of chronic illness. They are healthy. They are outsiders. They do not belong. That is not true. Just like me, they are nursing students. They need to learn about this in order to become good nurses. But they are still young and, at times, insensitive. 

This is another thing we need to discuss in our groups: 

"Imagine that you have just been diagnosed with a chronic illness, at your age and time in your life. Discuss the following in your group: how do you think that you would feel? How do you think that your life would change from what it is now? What goals do you feel would be important to you, when having to live with a chronic, serious illness?"

I don't have to imagine any of it. I am living it right now. I am sad, angry, confused. I am afraid for the future and the unknown, for knowing that my doctors don't know exactly how to treat this damn thing. That there haven't been any advances in treatment in, as my orthopedic surgeon says, a century. I am afraid because, since I replaced after my doctors where so confident that they got the damn infection out last time, what are the chances that I will replace again? I am angry that I will never be "cured" - the best I can hope for is remission (vs. active disease).  I am angry that I have been through so much already yet am still willing to go through more pain and uncertainty to try to get better. It is like gambling with what you already have for the hope that they, doctors, can make it better, but it can end up worse as well... I know what it means to want something you don't actually want, something that everything in your body screams against, in order to try to get better. I am afraid of pain. I am afraid of leaving the infection inside of me. Ambivalence - I want different things that contradict each other. I don't want anything other than for this to be over. I feel old, that I have gone through more than I should in my years but there is still more to come. I am lonely. I can't fit in anymore. Not really. All the trivial fun youthful things I missed out on. How can I go back to those things when I have had to take responsibility and be brave and strong and patient and sacrifice because I am ill. I am walking this alone. My peers don't understand. They smile and they nod, but they don't get it. They can't get it. They have not been through this. I am happy for them - they are healthy, they have what they should! I don't begrudge them that, but at the same time I am jealous. So so so jealous. How can I every explain all this to them?

One of the readings for the class was "But you don't look sick: The spoon theory" by Christine Miserandino. She described how a friend asked here how she felt being ill and thinking how she could possibly ever explain it to somebody else when she she had never been able to explain it to herself. That is exactly how chronic illness it. Unless you have been there, you don't get it. My mum has been saying that lately too. She says she goes through part of the illness with me, and is there for support, and is affected herself by the infection, that in a way that family is ill as well, but at the end of the day it affects me the most and she can't entirely understand it because she is not the one who is ill. And then you get that one person who cheerfully tells me "Well, young people who have witnessed a sick grandparent kind would understand!" as if they are berating me for saying that this is a highly personal experience that is hard to explain and for others to understand. But having a sick grandparent when you are a young child or even a young adult and only seeing the ill person once in a while is not the same as what the ill person goes through, what their immediate family who is directly involved goes through, what the doctors go through, etc. 

So how can I sit there is a class and tell my peers my very very personal experiences that I have not even come to terms with yet and expect them to understand. On the other hand, I can't not sit there and say nothing. I remember how we discussed palliative care at the end of semester one and had to consider how we would interact, as home care nurses, with a depressed, terminally ill mother of a teenager and younger child whose father was constantly away for work. One of my classmate said "I would tell her, in nicer words of course, to suck it up because there are other people who have it worse". I was shocked and saddened by the insensitivity of some of my classmates. And it makes me wonder, how will they respond to the topic of chronic illness? How will they respond to me if I tell them what I am going through?

It is time for bed now, I think. I have almost fallen asleep several times, head in my hands or on my desk, as I type this out. I am tired and upset and a bit antsy. On a side notes I went wrote the first quiz for lab today (about respiratory problems and oxygen administration). I got 100%!!! Then I went on a walk late at night, when I can't burn due to the doxycycline. I got fries almost feel asleep eating them - took everything to stay away in the restaurant. Then I walked around campus/the children's hospital. Campus is beautiful and quite, a different world at night. And the moon was glowing - deep orange. Gold int he sky. It made everything feel a little bit ok.