Learned the Hard Way
Flaresflare up (aka flare) noun a sudden outburst of or increase in the symptoms of a disease or condition.
Flares can last hours, days, weeks, or months. Their severity can be mild, moderate, severe, or "kill me now". Ok, so while I'd not seriously want to be killed, a bad flare can make you facetiously wish to be put out of your misery!
|The FLARE game from RA Guy|
A lot of people say they feel like they're dealing with the flu to the tenth power during a flare. There are a number of things that can bring on a flare: doing too much; bad weather; not practicing good self-care; stress (both bad stress and good stress such as the stress associated with happy events such as a vacation; having company visiting; weddings, etc.); an acute illness such as a cold or the flu; not sleeping enough; missing medications whether due to spacing out and forgetting them, skipping them to make them last longer or running out for whatever reason; pushing yourself too hard; no longer being responsive to medications, etc.
|Hurricane Hanna 09/06/08|
Hit SC/NC border 3am
One thing I find odd, is my flare pattern during a tropical event such as a tropical storm or hurricane. I might have a small flare as the front approaches, usually nothing too bad; unless I'd already been flaring prior to the front approaching. Once the front hits and the barometric pressure drops to the rate typically seen with a tropical system, I feel almost energized. That's an odd feeling for me, since most tropical systems produce at least some rain and I normally do NOT react well to rain. Typically, rain causes me to feel each painful joint all the more than I normally do. I become very stiff, occasionally swollen (although swelling is rare for me), and I have a lack of energy that is worse than my normal lack of energy. My whole body is tender to the touch (it's as if even my hair hurts). I feel as if my limbs are encased in concrete, making them feel heavy and hard to move. During this time, my fibro fog worsens. But, during the tropical low pressures associated with hurricanes and tropical storms, I feel an energy I typically do not possess (but wish I had). The stiffness relents, the mental fog parts, I no longer feel as if moving takes serious weight lifting. It's almost as if I have my pre-fibro self back. It does not last very long at all though, but even a few hours of relief is nice.
|Wayney asleep on the|
There are various ways of managing stress. One thing about learning to manage stress is that every person is different in what they find stressful. For one person, the thing that relieves their stress is a major trigger in a different person. We must remember not to judge others for their choices in what relieves stress so long as they are not causing further problems for themselves or someone else. Some people cannot comprehend gardening as being a stress reducer and others find it a huge reliever of stress. That shows how each person must look for their own way to manage stress, and keep trying new things until you find what works for you.
Pushing too hard or too fast
pace oneself verb do something at a restrained and steady rate or speed.
In other words, to not do something too quickly so that one does not get too tired or to finish.
I must learn to pace myself. How do I do that? I break tasks into small manageable steps. I set a limit of working for a time, then taking a break. Different tasks will mean that the time you can work on them, then take a a short break and then go back to the job will be different. Some parts of a job may need to be done all at once. If so, do the job and then adjust your rest period accordingly.
Here is one way of looking at it in a way that can help you feel less selfish and/or guilty about taking care of yourself before meeting the needs of others.. When you are flying somewhere, the flight attendants go over all of the rules, regulations and emergency procedures. One hard and fast rule is that should an emergency occur and the oxygen masks drop down, you are to put on your own mask before trying to help another person with theirs. You are to do this because should you not put your own mask on first, in helping another person, something could happen to keep you from being able to put your own mask and then there would be two people in need of help, rather than the original person. Had you put on your own mask before trying to help the other person, you would have eliminated your need for help. The extra few seconds that you would have taken to get your mask on likely would not have made a bit of difference to the person you were helping.
That example can be likened to you caring for your own needs before caring for the needs of those around you. By caring for yourself, you're keeping the chances that you need the help of those around you lower. Don't let your love and caring for those around you prevent you from properly caring for yourself. You are not going to be able to care for those you wish to care for from a hospital bed! And before you think that cannot or is not likely to happen to you, I thought the same thing prior to Dec. 2008.
How I Learned the Hard Way
The result of taking 20mg prednisone
|Cellulitis left leg |
mid Jan 2009
|This is my leg during the healing|
process in May 2009.
Below the wound, I am wearing
a boot to prevent heel sores
|This is not mine, but |
is a pic of a leg with a
wound vacuum on it
"Negative-pressure wound therapy (sometimes called "vacuum-assisted closure"). A sterile sponge is placed in the sore and covered with a sticky bandage that does not allow any air in. The small vacuum is then turned on and kept on at all times until the next treatment. The vacuum pulls drainage from the wound to help keep germs from collecting and growing there, and gently pulls the blood supply close to the surface of the sore to bring nutrients to the sore and to make new tissue grow."
|My leg as of Feb 2010. As of|
Apr 2012 it looks the same as
in this pic, minus the small sore.
By the time the wound was considered healed, they had been having a nurse who specialized in wound care coming in and doing the care of that area. Even after it had completely healed, she cautioned that it would possibly still form small sores on it at times. It did that for at least a year afterward if not longer.
|This is how my hand looked|
due to the contracture,
before beginning OT in Apr 2011.
I also developed a number of joint contractures from not moving for months. My ankles are in a position of when I am lying in bed, my toes point down toward the bed. During my PT at the nursing home, Jim, my therapist, worked hard to stretch the muscles and tendons in my legs and feet in order to allow me to be able to stand and walk. I still have quite a bit of contracture in my ankles but I have more movement than I did in the beginning of my PT. Even my toes contracted and now when I walk, I basically am standing with my weight on the tips of the toes of my right foot. My left foot is not nearly as bad. Which is kinda funny as in my feet, the right side is worse. But in my hands, the left was worse than the right one. My hands contracted so that I had loose fists and could not open my hands. Then my wrists also contracted and drew my hands down so that the fist basically faced the underside of my forearm. My elbows contracted as well and were bent so that each hand rested right along my collar bone.
|This is a picture of|
a woman with a
nasogastric feeding tube.
|Illustration of a J tube|
"a tube surgically inserted through the abdomen and into the jejunum (the second part of the small intestine). The procedure is called a jejunostomy."
|My PEG tube|
taken Apr. 2010
"a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. One type is the percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube."
|After tube removed|
|Illustration of a PICC line|
|Wayney in hospital|
|Wayney in nursing home|
Life with a chronic illness (or multiple chronic illnesses) can be filled with a number of lessons. Some are learned fairly easily, some are learned by seeing the experiences of other people. Other lessons are learned the hard way. Learning these lessons the hard way means that they will more than likely stay with you. You tend not to forget the hard stuff. I know that the lessons I've had to learn the hard way: not pushing myself too hard; making sure I properly take care of myself; practicing that good self-care by decreasing stress and sleeping properly have been the lessons that have been hard for me to learn. I think the one that sticks with me the most is pacing myself during a flare. It is one of the harder ones for me to do, but I have found that if I pace myself, I don't have quite as many problems during a mild flare. Not much helps during a major flare where my RA, fibro and Sjogren's are all flaring. That is a time when I just have to ride it out and do as best I can.
|Wayney at home|