View Full Version : Managing serious condition &/or chronic illness
Hi all...
I need some tips from those who are practiced at this, either on behalf of self, or supporting someone else. It dawned on me today that it takes a heck of a lot of time each day to manage all the aspects of having a serious illness. Oy vey!
Seems obvious, but the lived experience is so different from the intellectual understanding. And I am at the very beginning. What works for you to maintain balance, especially emotionally? Thank you! I need your wisdom right now.
I don't have direct experience but I can tell you some of the things that I've watched family members do.
- prioritize a schedule that works for management of the health condition. An elderly relative who had chronic pain from rheumatoid arthritis spent hours putting hot and cold packs on his knees daily (broken into 3-4 segments throughout the day). This meant that he couldn't interact with other people at those times of day, or have appointments scheduled.
- prioritize diet for the condition. Many conditions are improved by an anti-inflammatory diet. A relative with chronic migraine has to avoid many ingredients that are often in restaurant foods, such as wine and all grapes/raisins, MSG, hard cheeses, and more. She has to ask a lot of questions at restaurants and when she is at a potluck can really only eat the food that she brings.
- don't be afraid to get second opinions. Go to appointments with written lists of questions so that you don't forget to ask.
- read the literature yourself: http://www.ncbi.nlm.nih.gov/pubmed/
- research and try remedies espoused by traditional or alternative medicines, when you feel they are safe and have reasonable evidence. The relative with R.A. found considerable relief from an arnica-based gel, and the relative with migraines reduced the frequency with feverfew. Although many M.D.s scoff at alternatives, if you look at the data, some pharmaceutical remedies may not have much better evidence - they just have more and better-funded studies.
A lot of planning and forethought really make a big difference.
Be very aware of what triggers negative symptoms or just makes them worse. Being pro-active makes a huge difference in the long run.
Sometimes we have to do/buy certain things for convenience because to do it the long way, less expensive way, can sometimes be just too much.
Give yourself a break and most of all keep life as simple as possible.
Don't forget that emotional stressors can make things so much worse. If someone is toxic in your life, it might be time to rethink that friendship.
(((HUGS)))
I find it all a big drag, so whatever cuts down on the drag part helps me. I don't do every exercise every day, but most of them. I do best when I do them in the morning, just because then they're done and not nagging at me all day. I do them to music. I try to slow down--I'd had several doctors tell me had it occurred to me I'm old now and I had to start acting my age, etc--and also not to do things I think will hurt, because at my age and with my condition, injury doesn't clear up as fast if at all. It helps me that I have dogs and bird around when I do things that take up all the time. If I did everything every day that I'm supposed to do for chronic illness, it would take maybe 2 hours a day, plus I would rest some. Boring way to spend time, so I titrate it. Clearly part of my answer is I don't take care of myself as well as I should, but do some.
treehugger
3-21-13, 12:33pm
Great advice so far, especially this: "Sometimes we have to do/buy certain things for convenience because to do it the long way, less expensive way, can sometimes be just too much. Give yourself a break and most of all keep life as simple as possible."
I don't have a chronic illness but I am married to someone who does, and I have definitely had the caregiver role. Chronic illness leads to so many opportunities for stress. Relationship, emotional, money, time, work, pain, etc. Think of these separately or together, whatever makes sense to you, but be aware of them, so that you can manage them. Some are easier to set aside than others.
I have thought a lot about this this morning and realize I don't have any words of wisdom. All that got us through was keeping our sense of humor, but I know that is easier said that done. I have a lot of empathy for you and will be thinking of you and sending you warm thoughts.
Hugs,
Kara
A lot of planning and forethought really make a big difference.
Be very aware of what triggers negative symptoms or just makes them worse. Being pro-active makes a huge difference in the long run.
This, times a thousand. Try to think of every possible permutation of What Could Happen, and how you'd respond to each one. It's an enormous hassle, but planning ahead--rather than reacting right in the middle of an episode of whatever-it-is--is still the better course.
I've had Type 1 (insulin-dependent) diabetes for 33 years. It has absolutely shaped my personality and my life, including making me a *very* good planner. The silver lining is that it doesn't cause me any physical pain, just a lot of mental annoyance: "why do I have to allocate so much mental bandwidth to the failure of my pancreas when I was ten?" Maintenance takes up far more of my attention than I would prefer--but it's better than the alternative. :~)
Life_is_Simple
3-21-13, 8:20pm
One of the hardest parts of a serious or chronic illness is the fear and worry. What helped me:
I kept a journal, and basically I would write: "How do I feel today? Not that good. I think I felt this way last month. What happened then?" Then I would look at what I wrote last month and say, "Oh, I felt bad for a few days, then symptoms subsided. I just need to do X, Y, & Z." Or I would write, "I feel bad, this is worse than before. I can't think of what to do, but I don't feel good worrying about it. Ok, I will worry about this tomorrow at noon." By the next day noon, I would feel somewhat better. I tended to write that I felt bad, then talk myself into feeling a little better and not worrying as much.
I read The Wellness Book by Herbert Benson & Eileen Stuart. It's really good. It teaches "The Relaxation Response," which is a kind of meditation. That is helpful in itself. Additionally, what REALLY helped me were the Cognitive Exercises in it, that retrained my mind from freaking out about how sick I was. First you write out the stressor. Then there are columns for Physical Symptoms, Emotions, Automatic Thoughts, Cognitive Distortions, & Positive Thoughts. This is a more focused way of saying "I feel ____ physically, and it worries me. I am getting worse, I can't handle this. (automatic thought). Oh wait, that is my all-or-nothing thinking again (cognitive distortion). When I rest all one day and stick with the plan, I feel better the next day, and I can handle anything that comes my way (positive thoughts and affirmations)." I later took a 12 week program at the Herbert Benson's Mind-Body Institute based on that book. He wasn't the instructor but I saw him walking around the halls once. I wanted to go up and hug him, but I didn't know how he would take it ;)
I read the book "You Can Heal Your Life" by Louise Hay. Sometimes I would read the affirmations in the back over and over, to put positive thoughts into my head. I printed some out, and hung them on my wall.
I went to a therapist who specialized in Behavioral Medicine, with the goals of learning to cope, and thinking like a well person again. He wanted me to do the meditation and relaxation stuff. But I REALLY needed to calm the cognitive crap going on in my head first. So I switched to a more cognitive therapist. Oddly, we ended up doing some of the meditation/relaxation stuff later, after first working on the fears and worries. The first therapist did give me one thing which was he said "You are a normal person in abnormal circumstances." That helped.
I personally think physical exercise - as much as you can handle even if just a short walk or some gentle yoga - is one of the best ways to deal with any kind of illness (both with the physical as well as the mental stresses).
I have a neuromuscular condition. I find that I need a daily plan and put things in order of priority. I am best in the mornings. I alternate rest and doing what needs to be done. It takes me a long time to do things that I once did easily. I try to give myself grace to rest when I need it and to enjoy small accomplishments.
You've gotten really great responses from so many people already so I'll just add my two cents.
I cope best when I have a well thought out plan surrounding eating and sleeping as those are two problem areas for me. But in order to have a plan that I can execute on I need to expand my thinking to include things like grocery shopping and cooking. Sometimes it feels very overwhelming, like everything I do is in some way connected to managing my health. This used to really frustrate me, but a pain specialist once said to me when she was describing her work, "My job is to help people accept the new normal that is their life now." For some reason that statement really helped me. It made me look at everything I was coping with and recognize that it is part of what is going to be normal for me now and that wasn't necessarily a good or bad thing, just different than what used to be normal. It helps to realize that judging the situation doesn't make it better.
Another thing that has helped me is my meditation teacher and my favorite yoga teacher both saying phrases like, "Do [something] if it is comfortable for your body." It was like I had suddenly been given permission to not do stuff that wasn't comfortable for me in some way. I found that really liberating and it helped me to understand that we are all different and that we don't all have the same set of abilities. It also helped me to recognize that not every aspect of life is a competition.
I'm only dealing with this in a one-off way, and even then it drives me crazy.
If I were facing a chronic condition (including advancing age and its attendant crap--oh wait, I am), I'd do everything I could to avoid being boned by the medical establishment--you know, where they bully you into believing you need them, you need medicine, more medicine, yet more, and that your body will never be able to rally and improve on its own no matter what you do--just as a Voodoo priest might point a bone and curse someone.
I would do everything possible to live as normal a life, with as few encumbrances, as I could. I'd do everything possible to shore up my body's native ability to heal itself and try to avoiding pouring pharmaceutical fuel on a smoldering fire of unwellness. I would avoid internalizing other people's labels of me, above all. All easier said than done in our current model of care.
I've had asthma for 30 years. Daily meds for the last 20 some. I don't think of myself as sick. I feel great and can work 60 hour weeks when I want to.
I cooperate with my doc, and I take good care of myself. It's this combination that keeps me well. Back when I tried to get off meds despite doc advice, I was sick.
One thing I've gotten really good at is saying no thanks. I need to avoid cats, dogs, birds, dust (any overstuffed furniture, carpet, beds without appropriate covers, etc), milk products, scents. I meet friends at restaurants instead of their homes, unless they are the rare people who keep most of this stuff out of their home. Then I sit on wood or leather furniture, never lie on a carpeted floor, decline offers of hospitality in favor of a new motel (better chance of New mattress).
I take my twice daily meds faithfully. I work with my docs (primary care and asthma specialist) in trying New meds, eliminating others, etc. But never on my own.
And with this plan I dont feel sick. I forget I have a diagnosis.
I wish people would understand that we need the medical people in our lives, and equally we need to do all the self care stuff. So often people choose only obe of those approaches, and we need both working together.
If your condition badly affects your sleep or otherwise leaves you really exhausted, I would really recommend keeping a daily log of everything you need to do. If you need to eat or take meds at a certain time, write down when you do these things so you can look back at the log and don't have to try to remember when you are due next. This is especially true if you are on pain meds because you don't want to take them too often and OD yourself nor do you want to take them too late and end up in serious pain. When my son's condition was really bad, we also wrote down when we paid bills, etc. because it just reduced so much the work of finding the checkbook, bill stub, etc. to see if things were paid or not.
My issues deal more with chronic pain and chronic fatigue/fibromyalgia
Back in 1997 I developed a kidney stone that was about 3 by 4 INCHES. It had to be surgically removed thru my back by cutting into the kidney and I awoke during surgery which was traumatizing to say the least. It got worse from there with an massive systemic infection, numerous major abscesses, endomitriosis, hemorrhagic endomitriosis, fibromyalgia, chronic fatigue and unexplained events where I passed out often and unexpectedly with no warning.
I had to give up teaching kindergarten which broke my heart. My issues were so severe that I almost died and I spent many months bedridden, watching the parade of life go on without me, without even the strength to care that life was passing me by.
I had been previously a vary active person and had to learn to adapt to a sedentary life. I learned to crochet, cross stitch, read a lot more, and found may ways to occupy myself as I had an active mind but a very exhausted body.
I had to deal with learning to live with chronic pain and doctors who felt I was just there to get drugs and saw me not as a patient in severe pain with a problem but as an insurance card that they could bill. After almost dying at the hands of an incompetent doctor who dismissed my problems as "all in my head". He sent me this letter dismissing me from his care and I went straight to the ER where i was put into ICU because i was within days of dying.
Here is what i have learned to help me cope. Develop hobbies that you can do while resting, if back problems are an issue, a jacuzzi, pool or even a bath helps to take their weight off your back.
If you often wake in the morning in excruciating agony, keep a bottle of water by your bed, set you pain meds with them and set your clock for about an hour before you usually have to get up. Take your meds, go back to sleep and then when you wake up an hour later, your pain won;t be so great.
You can make homemade microwavable heating pads by putting rice in a clean sick, trying it off, microwaving it and applying it to the part that is in pain. The rice molds to the painful site in a way that heating pads don't.
I find it helpful to have my hubby to lightly run his fingers over my back which for me because it releases endorphins and seems to release some of the pain that has me in agony. It kinda causes you to get chill bumps which for some reason helps relieves the knots and pain.
The most insulting part of having a major illness is when a doctor dismisses it as "depression" and that it is "all in your mind". I could go a a major rant right now over it.
I was just thinking at some length how nice it would be if there were actual healers you could go to. Not pill-pushers working toward their next Pharma-financed vacation, not numbers-crunchers, not burned-out clock watchers, but actual caring men and women who would work patiently with you to find the root cause (not just the symptoms) of your dis-ease, and then guide you in helping your body heal itself. From gut flora destroyed by antibiotics or a problematic diet to mental/emotional stressors causing physiological problems, there are countless causes of illness that go overlooked while the first line of offense always seems to be pharmaceutical. I heard a physician once relate how his father, also a physician, counseled him that when you take a drug to treat a condition you are always courting another set of problems, so it's best to avoid drugs whenever you can. Of course that's not always possible, but it bears repeating. So where are the healers, or is healing inevitably a do it yourself project?
I am blown away by the wisdom here.... and all of us thus far, I believe, are women, yes? Thank you! Don't stop!!
Jane, I see an acupuncturist who is skilled in Chinese medicine. Once I have had surgery to remove my uterus - very appropriate, as I no longer use it, and the cancer is contained within it - I will see him for follow-up treatment for healing support. I am generally loathe to take pills, etc. When I do, it's because they are the best short term option. I respect whatever anyone chooses for their own treatment. This diagnostics journey has been rather intense; transvaginal ultrasound, uterine D&C and biopsy, a CT scan yesterday, lots of blood drawn, etc. All quite informative too. I am not looking forward to surgery in & of itself, but am definitely looking forward to cancer removal.
"I am not looking forward to surgery in & of itself, but am definitely looking forward to cancer removal. "
Absolutely. Then the healing can begin.
I don't know if it helps but the surgery was not a real issue. I was on a pain pump for a day and went home before ever getting a full meal. Took only Tylenol when home with maybe one stronger pill but not more than one. I was able to walk to the bathroom in less than 12 hours moving my pump with me. I was more interested in the operating room than the surgery and actually talked to the doctors in the hall and the nurse who was prepping me. I remember telling her how nice and warm the blanket was they put on me and she said they microwaved it. Then I fell asleep.........
The best thing I got for myself was a supportive abdominal band. A lot for mental support so I felt the incision was not going to open if I coughed and it gave support when I walked. I also got soft fleece pjs. I may not have looked great, but I felt good in those pjs.
Ensure you have quiet time to sleep while at home. Have someone bring you those first few meals and drinks. Gives them something to do.
As soon as you are walking around, keep doing it. Don't lift anything.
I've not had time to read the entire thread, but below are a few things friends with chronic conditions have found helpful:
*when you have well days, cook a batch or two of soup/stew/other main dish that freezes well, and put up in meal sized portions in freezer. When you're not feeling as well, then you have easy meals that just require heating.
*Simplifying your cooking: frozen veggies that just need to be microwaved, over fresh that require more work, for example, or some other type of healthy convenience foods.
"I am not looking forward to surgery in & of itself, but am definitely looking forward to cancer removal. "
Absolutely. Then the healing can begin.
I agree. While I suspect I would not be likely to take on months of chemo and radiation and the like, cutting the sucker out in a swift motion seems an appropriate response to the invader.
Tussiemussies
3-22-13, 10:08pm
Redfox, I don't have anything to add but just want to wish you all the best in adjusting to this situation. Christine
Jane ... Good questions. I see healing as something directed by me. My docs are part of the team, but so is my massage-healing lady, my friends, my own actions and habits. But I need to lead this team or it wont happen.
I agree. While I suspect I would not be likely to take on months of chemo and radiation and the like, cutting the sucker out in a swift motion seems an appropriate response to the invader.
Hah! Exactly, IL. I love the way you say things.
And thanks, Christine... I am gaining strength & confidence from you all.
Gardenarian
3-25-13, 5:18pm
I have been dealing with disbility and illness all of my life and feel I should have some wisdom to share.
I'll get back to you.
I have been dealing with disbility and illness all of my life and feel I should have some wisdom to share.
I'll get back to you.
I'm looking forward to it!
Wildflower
3-25-13, 10:58pm
I don't know how helpful I might be, redfox, but I've been dealing with chronic illness now for about 20 years. Diagnosed with Lupus and Rheumatoid Arthritis in my 30's, and now a congenital spinal condition has begun causing me great disability in the past year. Going from being an active person to having to use a wheelchair somedays has been very difficult. I've found myself having to embrace a while new identity of self that has been very hard for me.
I've had to learn to ask for help and to give up some control. Letting others do for me is a new thing as I've always liked to be in charge and control of my life, home, work, etc. My family is great, very supportive, and my DH has learned plenty of new skills in the past year. :) And I have learned to let him do chores, etc. the way he wants to, not how I think it should be done exactly. ;)
On days I am doing well I get alot done. Other days I just have to give into the pain and do whatever will get me through the day. My doctor, physical therapist, and pain management doctor, have been wonderful in orchestrating my healthcare and keeping me comfortable, and as active as I can be, with necessary medications and therapy. I was always one to NEVER take drugs if I didn't have to, but now I have to just to function. It's been difficult for me to accept....
I didn't mean to make this all about me, redfox. Just know that I understand somewhat what you're dealing with. I've had 3 cancer scares myself too a few years ago. Three breast lumpectomies which were the earliest form of cancer. I recuperated well from those, but always carry the cancer fear with me... It never really seems to be over as I have to go for rechecks often and I am always scared that it has come back...
I wish you good healing and peaceful days ahead, redfox. One good thing about illness is you come to appreciate with the greatest of joy the most simple things in life....
Wildflower, thank you. I have been so in the moment since my diagnosis, and I am calm about the upcoming surgery. At least for now! I so appreciate your reflections. One of my biggest challenges about aging is that my husband is 14 years younger than I am. I have some worry about him needing to take care of me, which I do not want! Except for intermittent times, like post surgery coming up... we do care for each other. I really appreciate these words "And I have learned to let him do chores, etc. the way he wants to, not how I think it should be done exactly." Yup!
I am so grateful for everyone's wisdom here. It supports my spirits as I move through this. Thank you.
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