A Good Day for me:
Lately, a good day is pretty good. On a good day, I might have no GI problems, or mild GI problems that are managed with medicine. (I follow my regular diet daily.) I might have just my "baseline" headache--generalized head pain, achy feeling, mostly in the back around the rods--the pain level can be as low as a 2 (although this is based on my new, modified pain scale). My energy may be high enough (with the help of caffeine pills) to be active several hours--up to 5. By active, I mean not resting in bed or the recliner. And my POTS symptoms may be well-managed with salt tablets and Midodrine, along with high water intake. This means that I am alert and able to walk around much of the day. My joints may only hurt when walking or standing in place. On a good day, I may have no trouble concentrating or coming up with words. Looking at all of this, I'd say I have a good day about once a week.
A Bad Day for me:
A bad day is still pretty terrible. Any number of things can cause a bad day, and often it's more than one symptom combined. It could be a migraine that doesn't abate with medicine--pain levels can really max out with this. I may pretty intense GI problems, including severe bloating, pain, or even intestinal obstruction. It could be severe POTS, where I am out of breath just from sitting up. And despite regular caffeine intake, I may have severe lethargy. Also from the POTS, I may be completely out of it, and go into a state of reduced consciousness for any length of time. I can have full-body muscle aches and joints that hurt with every movement. Bad days happen about once a week, too.
An Average Day for me:
So I guess the other five days are average days. I'll usually have mild GI problems, despite the usual diet and medicine. I often have a migraine, but many times the rescue medication I take will help it to go away in 2-6 hours. On an average day, my POTS symptoms force me to rest for the first 5 hours of the day...yes, 5 hours. That usually means I wake up around 10:00 and have to rest until 3:00-ish. I walk like a drunk person in a stupor all morning. I have trouble coming up with words or focusing on much in the mornings. And my energy level can be pretty decent later in the day, beginning around 4:00. Finally, on an average day, my joints, especially my knees and hips hurt a lot of the time. My spine often hurts. I get pretty bad muscle contractures in my neck and shoulders. Sudden vertigo spells are still common. If I have been somewhat active for even a few hours, I crash hard by 9:00 pm. Those are common symptoms on an average day.
I recognize just how improved I really am since my fusion revision surgery in the summer of 2010. I couldn't be more grateful for the good days, and even the average days. Having less of the bad days is incredible. So, even though I have plenty of symptoms, sometimes all at once, I am so grateful I had that surgery. I know I could be better, but I am so grateful to Dr. Bolognese for giving me another chance at living my life. I don't want to think about what I would be like if I had continued to decline.
So, I have plenty of limits, lots of meds, and a pretty regular, restricted schedule to my days. I can't exercise in any of the ways I would like to. I can't stay out late or drink alcohol. I still use a wheelchair at times and can't stand in one place for too long. I feel really out of it, and I have pain every moment. I deal with some truly horrific days, that feel completely impossible to survive. I visit doctors a lot. I can't work more than a few hours a week. I am constantly balancing and managing my symptoms. And yet, I can live independently most days of my life! Due to this, my quality of life has improved so much from where it was just two years ago. I would love to improve even more. I'd love to be able to work even 20 hours/week and exercise regularly. I'd love to be confident that I'll be able to raise a child one day. But if this is as good as it gets, I can accept it. And that's an amazing place for me to be in. :)
