Making goals with chronic illness

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Happy New Year! This is the time of year when people like to make resolutions, goals, out with the bad, in with the new, right?

It can be hard to face that if your health is poor or unpredictable. However, please don’t lose hope. There are some things you can do to make goals for the new year.

Short term goals are good

I like to make short-term goals, and then not give myself strict deadlines. For example I write a to-do list but don’t worry if I don’t cross things off in one day, I just leave it until the next day.

Be Realistic

A few months ago, it was very unrealistic for me to think that I might be able to do what I have energy for on an average day now. I knew my limits. So I usually only planned one thing per day, because I’d need the rest of the day to rest. Some people may need 3 days to rest after.

Making health goals

Making health goals can be done with or without your doctors input. Instead of making goals for how you will feel, make goals on which health issues you want to address. That’s the part you can control. For example last January, I made a goal to address mold poisoning and some other genetic issues I had heard about through a lyme conference. When I did treat them, I felt better. But my goal was to find a proper treatment, not to get better, since that part is not always in my control.

Making personal goals

It can be hard for a lot of people who are sick to make personal goals. Perhaps your hobbies were taken away by your illness. I am unable to do pottery which I loved, due to a bad back. Bad joints keeps me from skiing which I loved in my old life. It took me awhile, but I found new hobbies which I could do within my limitations. Even when my hands were so painful I could not type, I still listened to books on tape and used Dragon Dictate to help me “write”.

I see a lot of sick people give up on personal goals. I do think that trying to find something you can still do and carrying it out can help with depression and hopelessness. Some people even find connection with others is a good goal. If you are sick, perhaps finding like-minded people or others with your same illness online can be a goal so you feel less hopeless.

Diet Goals

Many a year and different times of year I have had diet goal or “resolutions”. Sometimes with diet it can be easier to ease into it rather than be too strict. However others like to clean the house of the forbidden food and then go cold turkey. In the case of diet, dates can be helpful. I like to make a goal like, “No sugar until Valentine’s day”, so I know I will have a good stretch of time where my body can heal from the sugar. Then if I really still want it on that date, I will indulge. My body has had a break so that small amount of sugar will not be as harmful as the daily impact.

This year I want to add in more juicing. Since my nausea has been much better, I can tolerate juicing more. Therefore I think it’s reasonable I want to juice a few times a week. So far this past week I’ve done a good job at it. If I forget for a few days, no sweat but I’ll try to remind myself to get back on track.

Setbacks

We all have setbacks from reaching our goals. Try not to give up. I like to give myself a day to just recover if it’s been a tough time (like driving for me, it really takes me down!) I used to have to take a few days or a week. It’s OK to do and don’t feel bad about it. In fact not taking that time can mean even worse health issues. If your body says stop, stop.

Again I mention not having too strict of a deadline. If you have a goal of reading a book a week, and you fall short, you will perhaps get down on yourself. Change expectations but keep the essence of that value of reading, for example to 2 books a month instead.

Hope this was helpful! I have been able to make life changes by setting goals. It makes me sad to see other people with chronic illness giving up on goals for fear of failure. Perhaps you can really change your life to be healthier or happier, or both by setting a realistic small goal. Just keep at it and change can happen.

Happy New Year! Wishing you all a happier and healthier 2014.

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Improvements

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When I feel better, I don’t often stop to think about it, I just move on to all the stuff that was waiting on me while I felt awful. Things I wanted to do, things I had to do, just life. And then other times, when I am feeling better, I tell people then it gets worse right after! It’s some sort of curse. But I have noticed now a pattern of getting better, not just getting one symptom going away and another emerging, like before, but no really better. My head is clearer, I have less fatigue and even now some pain going away. But fatigue being better is the biggest one, because who can do anything if you are tired?

It’s only been since my new doctor who is a naturopath who is special trained by ILADS (International Lyme and Associated Diseases Society) that I have had improvements. It’s been an investment of time, because the traveling is long, and money, because she is not covered by my insurance and there’s a lot of supplements and medicines to take. If I wasn’t getting better, I would not want to spend that time and money much longer. But now, it’s worth it.

I mostly post this because I want to give other lyme patients hope. Now some may say it won’t last, or that I am not really better if I have to take herbs and antibiotics still. I am still in the process of getting better. But even if I have to take some of these things for life, I would rather have a life taking supplements than a life of pain and misery.

The problem with lyme, is that it’s often not just lyme! It’s co-infections, it’s mold, it’s toxins, and that it’s different for everyone. And, now part of what I am dealing with is the fallout from lyme: what lyme destroyed in its path. For me it’s some hormonal things and adrenal and thyroid issues among other things. I wish i could say to everyone to take what I take and you will be better. But this combo may not be best for you. I will say to do what I did: find the best doctor you can, be willing to travel and make an investment in the process for a certain amount of time before you want to see progress.

I really hope I keep improving at this rate, but if I don’t I will still enjoy the time that I am better and try not to be worried every minute that it’s going to get worse. And at this point I’ve also learned how to live better with chronic illness, which helps. I’ve learned my limits and how to work around them. I’ve learned how not to make myself worse.

There were lots of times I wanted to give up but something told me to keep fighting. I kept researching and trying to find ways to improve. I try to connect with other people with chronic illness and lyme who are positive and help relate. I think these things are important and illness can be isolating so finding others who have a similar situation is important. And don’t give up, I care about you.

Chronic Resilience

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Before all this mofo madness began, I finished a book called Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness by Danae Horn.

I appreciated the combination of practical advice and true life stories of real women in this book. The author, Danae, has a health condition that causes her issues with chronic pain and fatigue, which are some of the more common issues in many illnesses. However the theme of illness derailing what you wanted to do or expected to do with your life is a biggie in this one. These women in the book, a few of whom are terminal, deal with adjusting expectations, and struggling to live life to the fullest despite their lifespan being decrease by something like cancer, or their abilities being limited by fatigue or pain or organ failure. How do they adjust? How do they keep doing what they are passionate about but not make themselves sicker in the process?

Danae does not just pick stories of women with perfect happy ending stories, no, they struggle as she did, but they have strengths that helped them overcome it. She outlines different strategies to help you get through this tough time, but also to not let your illness sideline you.

Trained as a life coach, you feel gently guided by Danae to really hone in on what you are passionate about, cut out the crap in your life that’s weighing you down, and pursue what you want to do at a pace appropriate for your illness. And let’s face it, a lot of what some of us with disabling conditions are passionate about is getting better and managing health appointments to get to that place.

Danae also believes in taking care of yourself. I never felt overly pushed to “move on” or “focus on only the positives” as other self-help books can make me feel. No, Dana feels strongly about putting your health needs front and center in your life, making sure you get the right diet, pamper yourself, and even indulge a little as appropriate. And cites research that pushing away real feelings to only be positive is detrimental to health. She keeps it real, and I think she’d understand that even though I want to be perfectly sugar-free, sometimes I cheat and eat a little dark chocolate. I think she’d sneak a piece maybe even, but then we’d follow it up with green juice the next day.

I can say this book was part of an inspiration for this blog. I’d be wanting to start a new blog for awhile but she helped me get motivated. Her ideas helped me feel less overwhelmed by life, because by outlining what’s really important, you make more time, even if most of your day is feeling like crap.

After reading her book, I since learned that Danae is going into kidney failure. However her husband was able to become a donor. What love! I wish them both lots of luck for the surgery.

I highly recommend this book. If you have chronic illness, autoimmune condition, lyme, terminal illness, whatever, as a woman (and even some of it would be helpful for guys too), you must read this! I can say it’s changed my life for the better.