Here are my first and best ideas to help with this. More suggestions are welcome - please leave your ideas in the comments. Everyone loves to hear tips.
Lifesavers
With chronic illness you are forced to be your own health manager so it is up to you to gather information to help you make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you. Yes, there is always the hope of having them return but in the meantime try to find the management style you are most comfortable with.
1. Participatory
2. Director
3. Teamwork - recommended
I'm in charge here
The first suggestion I would make is to join an online group or community. They can be a great source of information and encouragement. It's harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts.
Yahoo has a more old-school type of healthcare support group e.g. RA-Support and ra-factor are two of thousands. People get to know one another well over the years. Then there are "boards" like Sjogrens World or Rheumamisfits, where a consistent group of people can offer all kinds of experience and advice.
On Twitter it is easy to become part of the #rheum, #chronic or #spoonie community. Also blogs like The Seated View and RAWarrior and numerous others can be sources of support and information. As you become comfortable with a group they can often act as your cheerleaders for encouragement and of course you can cheer them on too.
Support Group
#3 Start now to collect tips about good doctors, clinics, possible treatments and other types of health care professionals who may be able to help you, if not now, maybe in a few years. When you need them it's much easier if you keep track as you go along.
#4 This one is purely practical. Try to build up a small surplus of your most essential medications. Every time you forget to take one put it in your "extra" vial. You never know what can happen - hurricane, earthquake, pharmacy fire. You don't want to be desperate because you are running out of medication. It's another way to have control.
#5 I suggest you journal or blog. There's a post about that here so if it attracts you as an idea you can see the reasoning and read a paper about what it can do for you.
#6 It's good to feel that you always have a possible "move" that you can still make or plan that can improve the way things are going for you. Whether I'm waiting to see how a new treatment works before going on to the next, or just still have pain treatment possibility that I don't always use or need, I feel much more in control if I have a strategy that may help if things get worse.
For instance in the pain area I have a TENS machine as well as alternative pain pills that I don't use very often. This means that I can often treat my own pain safely and go to the doctor less often. Also I don't feel backed into a corner. That can make people feel desperate.
No, going to the vet is out of the question
#7 It's worth being open to trying different ideas. In my case, though I feel that medication is in general working for me I would consider trying massage, acupuncture, change of diet, specific exercise and so on. There is little I rule out completely except things with no proof at all or that sound to good to be true. I've also learned it's a bad sign when people on social media try too hard to get you to use their wonderful remedy.
#8 It's good to feel that you can control and improve at something - anything. For instance there are many brain exercises free on line. One is Beat the Chimp. Getting through the sudoku or crosswords every day is another example of control as is any creative and fulfilling experience you engage in, including crafts and puzzles.
#9 You can take a leaf out of Neil Pasricha's book and start your own Book of Awesome. There are many things in people's lives that can lead to small moments of joy. Open up a folder on your desktop and find a happy picture every day to put in it, if you can't find things any other way.
Thinking of summer
#10 Pets can keep you going when nothing else helps. They need you.
I read a scientific paper called Dispositional optimism and coping with Pain that discusses how your conviction about having control helps you to to deal with stressful experiences. Here is a quote from it:
"When analyzing the course of psychological processes of coping with pain, attention should be drawn to the factors which may support an individual in their efforts to reduce sensations or get control over stressful experiences. One of such factors is an individual's conviction about having control over what happens in life or about the ability to influence and change the course of events"
(bolding by me)
I found this paper when putting this post together, so here is the scientific basis to my conviction that control will help with chronic disease. All the best to you in your own efforts
This is such a great post, Annette. I agree with all that you've said (and you reminded me that I need to put some of my spare pain pills and herbal antidepressants into our earthquake kit).
ReplyDeleteThe focus of your list might change more if you're like me and most meds of choice don't work, or you're intolerant to them. e.g. Plaquenil (Sjogren's) and Prednisone make me intensely depressed. Alternative treatments become more important. I've relied heavily on my naturopath. Money then becomes an issue, as it is for me now. What do we do then?
Self-care becomes very important. I've always had problems with self-compassion and self-esteem. I like reading a lot of books by Buddhist authors like Tara Brach. They focus on meditations and teachings for helping us overcome these issues if they're a problem. I plan to feature some of these books on my website when I have some energy. You don't have to be Buddhist to benefit, and it doesn't have to compromise your own spiritual beliefs. I see them very much as practices for living better.
I see that community is high on your list, and I would like to be more involved in community. Joining the blogosphere has gone part-way toward that. About a decade ago I was heavily involved with several online communities, including moderating one of them. It was a huge job that took up much of my time (probably not a good idea when I was trying to graduate). The amount of dramas that emerged on these forum and e-mail type communities has made me very leery to get involved now I have less resources than before. But I admit it's nice to talk to others and get the kind of understanding that comes from going through the same issues together. Maybe when some of the other dramas settle in my life, I will have the energy to pursue it.
Many blessings,
Jane
Your posts are always so good Annette. This one is no exception. It is absolutely true that control certainly becomes an issue when one is plagued with different sorts of ailments. Sometimes making a simple decision for my well being will make me feel so much better. Sometimes I get lazy about making decisions about other health care because the daily dose of RA and a few other things can be just too much. Today I decided to arrange an eye appointment and it helped me feel like I could be in charge of something. Lol...Your posts are full of good ideas and they make you think. Thanks for such creative presentations. They are wonderful.
ReplyDeleteWhat a lovely comment Roze, and I'm glad you took another step.
DeleteI've been procrastinating on making an OT appointment and know just what you mean. It's also easier to give advice to others that to jump in and do it yourself too, especially some days