By David Spero | April 1, 2009 3:46 pm
I’m trying to stay positive about this. Do you, like me, work as hard as you can to take care of yourself? You try to get the best information and act on it. Try to exercise; eat right. Relax, stretch, think positive thoughts. Get help from professionals and other people, learn to communicate better with friends and family. Etc.
And then, sometimes, you get worse anyway. And it’s so frustrating. That’s where I am now. My multiple sclerosis (MS) keeps getting worse. Legs are weaker, walking is harder, more pain in my back, hips, and knees.
And that’s in spite of receiving acupuncture  and medicines. I’m trying two diets thought to be good for MS. I’m meditating, doing yoga, water exercise, and a bunch of other stuff. Why isn’t it helping? Am I doing something wrong, am I just having a run of bad luck, or is it just that nothing I do will make a difference?
Dealing with Feelings
How do I feel about all this? I’m angry that nothing works, and I’m angry that nobody really knows what to do. I’m angry that I’m getting weaker, when other people who take no care of themselves at all are out bopping around.
I’m sad about losing things I loved. First it was basketball, then dancing, now walking. (Well, OK, I was never that excited about walking, but I miss it sometimes.) I’m scared about what the future will bring. Will I be able to get out of bed at all? And I feel guilty that I haven’t been able to do more to help myself.
Actually, I’m glad to be aware of these feelings. I used to just ignore them, but lately I’ve learned how feelings can help. (Laurel Mellin’s book The Pathway has helped with this.)
Do you have times like this? From comments you’ve written, I’m pretty sure a lot of you do. How do you cope, when you eat the food they tell you to eat, walk every day, take your medicines, and your blood sugar goes up anyway? Or if your weight goes up? Or your neuropathy gets worse, or a new symptom comes along? How does it make you feel? What do you do about it? Do you promise to try harder, scream, cry, call your doctor, or what?
One thing that helps me is remembering the positives: all the things I can still do, the happy times and good experiences I still have. Also to feel good about myself if I can — that I’m trying hard, doing a good job, and accomplishing good things in spite of my MS. Noticing the good feelings in my body, even if there aren’t many of them. Not focusing too much on the pain.
Another important thing, for me at least, is not giving up. I keep looking for what might work better or help me more. Keep asking for help and trying new things. Of course, searching can get kind of tiresome after a while. Sometimes I just want to crawl up in bed and stay there.
With diabetes, there’s a lot more advice out there on what to do. But that doesn’t always help, does it? The advice often conflicts. What works for someone else might not work for you. People who don’t know much often give out the most advice. (This applies to some MDs, too.)
So what do you do to keep going? Are you ever tempted to give up, and what do you do with those feelings? Please let us know.
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