Here are a few things about my particular illness and illness journey that you probably don't know!
1) I cannot sing. Ok, I could never 'sing'....carry a tune, but now I am unable to sing except for a few words before I feel very sick. This is a breathing issue. I've tried singing sitting down, but could never sing standing up. My kids tell me this one isn't a curse...but a blessing for everyone else.... Haha, they are learning to see silver linings.
2) When we go out to eat, I only go to places that have booths. I have to sit with my legs elevated (especially when eating) and doing that in a hard chair is not only uncomfortable, but makes my legs fall asleep.
3) 4-5 times a year I lose all the hair on my arms. It grows back just in time to lose it again. This is due to poor circulation and venous pooling. I also lose large chunks of the hair on my head from the hypoperfusion, but with all my curls, I can cover it up well.
4) I would prefer to walk around than have to stand in one place. If I keep the blood moving and circulating, I can keep it going to my heart and brain. The second I stop moving, it slowing begins to pool and produce the debilitating hypoperfusion. At that point, the slurred speech, confusion, and dizziness will set in.
5) I can drive a very low lying car for 15-20 minutes (on a good day). We had to buy a small car just so that my legs won't dangle at all...which speeds up the pooling. I've enjoyed driving myself more than almost anything else! This has been so freeing.
6) I've developed an unusual amount of food allergies and intolerances over the last 3 years. I was given a very 'scientific' reason for this phenomenon, that I do not quite understand. It has made eating quite a challenge, and I'm probably not very much fun to invite over for a dinner party! :)
7) I carry a small portable foot stool with me everywhere I go. I still cannot sit with my legs down, so I bring along a stool to put my legs up in public. I must admit it's very difficult for me to ignore the istimga that goes along with propping up my feet in public. I've had a few comments along the way, and I'm still learning to take them in stride.
8) I got a special type of pacemaker 2 years ago that not only paces my heart, but has a blood pressure sensor to help prevent passing out from sudden changes in blood pressure. However, because the second feature kept going off all the time, and was very uncomfortable and painful, I had the second feature turned off. Now, my pacemaker is used just for pacing my heart.
9) I have a 'frozen shoulder' that I will never be able to raise again without surgery. After my pacemaker surgery, my already 'bum' shoulder became very stiff with increased scar tissue. After years of being bedridden, I didn't find many occasions to raise my arms much. As a result, the shoulder became frozen. After months of physical therapy, the doctor said the only way to 'unfreeze' the shoulder is by cutting the scar tissue out in surgery. (I already had a joint issue in that shoulder prior to getting sick). I cannot raise my left hand over my head, behind my back, or out to the side. Surgery for me is out of the question.
10) Sugar is my enemy. About 2 years ago, every time I ate white sugar, my heart rate would go crazy and then into an irregular arrhythmia. This was an unwanted side effect especially while being bedridden. I can eat a very little here and there before it triggers the heart. The key is knowing how much before it begins. Like any warm-blooded female, no sugar is NOT an option!
11) I developed a condition called: Gastroparesis. This means that I cannot digest my food well, and after a 6 hour test, I still had more than 75% of my meal undigested in my stomach. That has produced a lot of unwanted symptoms and digestive issues, as you can imagine. This does seem to come and go for me. I can be doing really well, then out of the blue not be able to eat well for weeks on end. This has been frustrating to deal with! I think if I had lost some weight because of it, I would have accepted it a little easier. :)
12) A good day for me today is what a really bad day would have been for me 4 years ago! I often have 'great days' now. But I realized that my new great days are probably not the same definition that most people would categorize a good day. I haven't had a day go by that I didn't have a major limitation in normal actives in 4 years. I have to watch my heart rate and blood pressures very closely with cooking, showering, walking, exercising, and driving. I can never bend over, stand up quickly, or lie flat. My legs must remain elevated no matter what my activity may be that day. I have to guzzle fluids all day, watch my diet carefully, and not be in the heat. Even with all these precautions, I will still have to deal with head rushes, dizziness, shortness of breath, chest pain, facial flushing, digestive issues and more on any given day. But this is still what I would call a 'good day'!
