Lately I’ve grown weary of explaining my chronic illness and how it affects my life. I’m sure those of you out there who have dealt with this situation for years are far more frustrated by how few people understand or seem to have sympathy for those of us struggling every day to live some semblance of a normal life.
So I’m fighting back, harder than I ever have before. Want to know what I’m doing? Maybe something I talk about below resonates with you. One of the goals of this blog is to make those with chronic illness feel less alone. I hope I’m succeeding.
- Walking on a consistent basis: I’m finding a way to be more active, but in a way I can go at my own pace and have measurable goals. My father, at 69 years old, runs a 5k about once a month during good weather. I’m going to try walking in some of them. For many healthy people, this doesn’t seem like much of a “thing”, but we all know how challenging any kind of exercise can be for someone with a chronic illness. Can I walk a 5k (3.2 miles)? I’m not sure. I need to test my current abilities, and then I need to assess how I feel the next day. I won’t put pressure oh myself to try to get the distance. If it doesn’t even happen this year, that’s okay.
- Taking control of my meds: I was on a bunch of prescription meds last fall and winter. I don’t think any of them were helping me. So, together with my doctor, we’ve made a schedule to slowly ramp off everything I can. When I’m done, I’ll be taking Synthroid, which I have been since 1998, Wellbutrin, which I’ve been taking since 2005, and birth control pills. No “fibro” drugs, no extra antidepressants, no drugs to help me sleep.
- Watching the amount of sleep I’m getting: Since I’ve gotten off Effexor the amount and quality of my sleep has risen dramatically. Mostly gone are the endless days of four or five-hour nights; of not being able to sleep at all. Now, as long as I’m not dumb and stay up too late, I can get between six and eight hours of sleep a night. Those aren’t all awesome sleeps that make me wake refreshed, but like I said, far better than before.
- Looking into “partner” autoimmune diseases: Most autoimmune diseases seem to come with “friends”. I’ve already asked for testing to see if I have Hashimoto’s Thyroiditis, which it appears I don’t, and I plan to push for more testing to eliminate others. Part of that push will include a trip to the Cleveland Clinic, which will hopefully yield some answers. My husband and I did extensive research on where the best doctors and researchers for autoimmune diseases were, and Cleveland Clinic, about three hours from my home in Buffalo, seems to be a good choice.
- Not letting anyone but me make the biggest decisions: Yes, my husband is obviously very involved and invested in the choices I’m making, but ultimately, there’s no one else who can or should be the last word on my health. I’ll talk to doctors, gather research, confer with other chronic illness warriors, and whatever else I think I need to do to improve my situation. But no matter how badly someone else wants me to do something, if I don’t think it’s right, I won’t. That doesn’t mean I never will. I might change my mind and decide to try a certain treatment or drug or lifestyle change, but it will be my choice.
What steps are you taking to fight back? Big or small, they all count. They all matter and can make a difference. Tell me about them in the comments!
1. Listening to my friends stories and investigating symptoms. It has helped me figure out it hasn’t all been my depression.
2. Being more open to different meds and diet changes. It was amazing one long acting med to help with my arthritis helped my Migraines as well as my back and side.
3. Changing drs. I’m tired of being patted on my head and called a liar. I shouldn’t have to live in fear of eating . I also shouldn’t have to call for a refill and be told nope until you see the Dr in three months.
4. Finding my way again. Get back to me. The reader. The crafter. The sister. The wife. The mom. Not just superwoman.
Reblogged this on Mamaboo's Mayhem.