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!