Tuesday, May 17, 2011

Day Ratings

Every single day I am asked the same question “how are you feeling today?” But I do not always give the same answer. Some days it’s “okay,” “decent,” or on rare days “good.” Now just a reminder, feeling good to me is different than being good. I can feel good but not so much be in good terms health wise. So on this blog post I am going to demystify my responses. I will also rate them with 1 being the worst and 10 being the best for those of you who understand best with numbers.

10 – Amazing. Don’t think I’ve ever actually said “I feel amazing” since becoming ill.

9- Fantastic. I’ve said this maybe a total of three times since being diagnosed with Lupus. On a fantastic day my head is clear and I have basically no symptoms. I feel my age.

8- Great. Yup, great is well great. Great days happen most often when my lupus is well managed/remission. Lets just say bouncing off the walls is an understatement for how I am when I feel “great.” I’m not accustomed to having excess energy and I have plenty on a great day. Sometimes so much I shake and cannot stop fidgeting. I achieve the world on great days.

7- Good. So what is all the hype about a “good” day? Sometimes I do actually have them. First, on a good day my mind is clear and my body feels like it hasn’t been ran over by a bus. Second, I have energy. Not as much as a great day but a sizeable amount. Generally I am able to do a number of things without exhausting my spoons and in very little pain. On good days I enjoy life. Right now I have maybe one good day per week.

6- Fine. Definition- a neutral/generic/normal feeling day. Nothing special about a fine day. I hurt a bit and my mind is slightly cloudy. Life is tolerable. I by no means feel bad on a “just fine” day.

5- Decent. I don’t feel great but it’s not the worst. Starting to get into the territory of moderate fog and moderate pain. Generally I will also be having problems with swelling or mouth sores. I struggle to get through my daily tasks on a decent day.

4- Alright. A step below decent but still not the worst. Swelling, fatigue, sores, pain, fog are a bit un-tolerable. At the alright stage I can still function doing my daily tasks though I might seem confused at times even with simple common sense things. I tend to be a bit more moody on an alright day. Not everything I was supposed to do will get done on an alright day. My spoon budget exhausts fairly quickly.

3- Not Good. This is different than bad. Not good means “I don’t feel good.” My symptoms are pretty heavy that day and I am in definite pain. You might observe lack of eye contact and lack of speech from me. I am probably also still in my night clothing and walking around stiffly. Do not touch me, it really hurts. Not good days I generally get done one major thing, like going to school for an hour. Then I come home and collapse.

2- Bad. Bad days happen. All of my symptoms come raining down on me and I really feel like shit. Generally I am too exhausted to get out of bed, let alone do anything. I either sleep or if I am in too much pain to sleep I stare at my blank popcorn ceiling all day. Not having the energy to even sit up. I don’t eat much, I don’t talk, or do much of anything on a bad day.

1.- … No response. Super horrible atrocious worst of the worst hell on earth day. Let’s just say I’ve had a few of these. They really suck. The few I have had, I have wound up in the doctor’s office all day getting emergency blood work done and such. I won’t even go into how bad my symptoms are on a no response day. Let’s just say I hope you never have to see me on one of those days.

I hope this helps to decode the responses from me and bring greater understanding about how I am feeling. Wishing everyone a spoon filled week!

Saturday, May 7, 2011

Not My Choice

To have a life long chronic illness which robs me of some of my most basic rights. Knocks me to the ground every single day. Attacks a moment’s notice with the force of a thousand elephants. Works in mysterious ways. Can keep me bound to a bed day and night. Everyday it slowly sucks out a little bit more of my youth, my life. I have no consent on this matter. I signed no permission slip stating lupus can come and have a permanent sleep over. Never did I want a disease people don’t know about, understand or recognize. Lately I have been struggling with the idea of lupus as a punishment. In my factual mind I know lupus is genetically pre-disposed in my case and for some reason I turned into a statistic. Chronic illness is the worst type of torture available. Invisible, painful, long lasting, sometimes life threatening, slowly sucking away the very life a person desires. But there is some little illogical part of me that feels like lupus came to me as a punishment. Depending on the level of lupus activity one could almost say it is the “living dead” punishment. Sometimes living with lupus can be worse than dying.

Keeping a positive glow about life is a constant struggle for me. Finding happiness amid the turmoil and sanity amongst the insane. Things are pretty pathetic when the highlight of my day is moving down to the futon to rest so I can look at my piano. Not play it of course because it would hurt too much. Right now the sheer thought of spending an entire life feeling under the weather is daunting. One day at a time is how I am taking life. Not that other people don’t but it’s a bit different. In my one day I don’t really get much done or function for very long. Every hour I feel different than the hour before. Half the time I feel so crummy I don’t even want to talk with other people. Some days I have to trade off between seeing my horse or going up to school for an hour. Not having energy is just plain frustrating.

With lupus I have very little control. I hate that. My life (or desired life) has tons of structure in it. Structure helps me greatly to succeed. I need predictability and patterns. Controlling what I can helps to keep me feeling grounded. Now, I have no desire to be a controller of others. Just in control of my own body and life. Being able to live life with only three parties present: me, myself and I. Not the four I have now: me, myself, I and lupus. Lupus is like a broken chain on a bike (multi speed.) The brakes still work but the driving mechanism is broken. One is forced to hop off the bike and (slowly) walk it back home. Walking takes far longer than just pedaling blissfully along.

Any person who wants to be sick for attention is just plain crazy. Helk, if I could be healthy and didn’t have a lot of attention I would be happy. Having an illness I feel like I sometimes get the wrong type of attention. Sympathy gets me nowhere. Ignorance hurts my feelings. Acknowledgement lightens my fear. Understanding gives me a hint of peace. But really I don’t care for sick attention. Healthy attention, bring it on!

My punishment is not consensual. Nor is it pleasant. This morning I am just feeling “sick and tired of being sick and tired” as I reflect upon how lupus has negatively influenced my life. I also feel like it has robbed me of a number of joys of my mid teenage years. There’s not way to get back what I lost. Only thing to do is embrace what I have found and march onward. I did not choose for lupus to be one of my major bridges in life.