I know everyone has some sort of stress they are dealing with, but those of us with a chronic illness seem to have more than our fair share. We have stress in places that others don't. Things that may be fairly simple for others, aren't for us. For example, doctor's appointments. There's the whole getting ready thing, the driving and the waiting. And, the waiting. And, once they get you back to the little exam room, more waiting. It's exhausting. It's exhausting before you even see the doctor. There's the mental stress of trying to communicate with your doctor. Am I remembering everything I wanted to ask her?, Wait, what did he mean by that? Then, there's the trip back home. Which may include a stop at the pharmacy for some new meds...yay! I don't know about you guys, but as soon as I make it back home, I'm ready for a nap. Besides doctor's appointments, we have to deal with insurance companies, referrals (and all of the paperwork gathering they might entail), and our medications. There's the stress of having to explain to family and friends what illness we have and how it affects us. And, that, no the vitamins and wraps they are selling will not make us all better. I could go on and on, but I think you get the picture. Most of you are living the picture. I like to think that as I've aged, I've learned to deal with stress in a more positive way. And, I do think I've made some improvements. For one, I'm not really much of a worrier any more. Odd, isn't it? Someone dealing with several chronic illnesses who doesn't worry (much). I suppose I've realized that worrying really doesn't accomplish anything. It makes things worse. But, one area that I feel as though I'm failing at, is successfully dealing with my youngest child's chronic illnesses. That seems to be really stressing me out.
Last week, I shared about the reaction she had to a new medication. Well, the Prednisone really did a number on her, too. I honestly think the initial reaction to the medication and the affects of the Prednisone have to do with her complex medical problems and her low body weight. Plus, there's the whole anxiety issue. Last week, she was so weak, achy, disoriented and anxious. She was spending too much time on the Internet researching the reaction and the affects of the Prednisone. She was so, so scared. I know being on Pred has to suck big time (I've never been on it, luckily) for a healthy, anxiety free person, but when you aren't healthy and you are anxious, well....it's just a recipe for a stress filled week. Stress filled for both of us. I had to spend a lot of time reassuring her. A lot of time telling her not to get on the internet. A lot of time just being with her (I even spent an hour in the middle of one night talking to her.) I love her so much and I was concerned with the initial reaction, (By the way, we did see the ER doctors notes and she did diagnose her with a dyskinesia reaction.) but I knew that she would be fine. I just had to try to convince her of that over and over again. I know I've discussed this before, but I feel as if my illness has made me not have the energy to cope with these kinds of things. I did cope. I did my best. But, I also felt very stressed and very guilty. Guilty that I wasn't doing enough. Her boyfriend, as always, was a major help. I find myself being very grateful that he is there for her. At times, I feel like he is taking my place in her life. And, I mean that in a good way. I think that's the way it should be. They are very much in love and have talked about marriage. He still has a few years of college left though (she has one), so they are (hopefully) waiting until after he graduates to get married. I will always be there for her. Always be there for all of my kids. But, I feel as though, in the near future, many, if not most, of their needs will be met through their spouses. Not all, but most of them. I could not have picked a better young man for her. We loved her former, long-time high school boyfriend. In fact, they were engaged. But, she broke things off. Now, we see how all of this was meant to be. Her current boyfriend, is the son of our preacher. So, not only does she have the support of him, she has it of his whole family and, in all likelihood, most of the church! Anyway, she is finally starting to feel better. Yesterday, she went to church. I sat on one side of her, her boyfriend sat on the other. I held one hand, he held the other. I sat with her while everyone else stood to sing. I sat not only to be with her, but because I can't stand for very long either. We were quite the pair. But, she made it through! She pushed herself when she didn't feel much like going. There are times when those of us with a chronic illness shouldn't push ourselves, but this wasn't one of them. She needed to go to prove to herself that she really was okay. That she was getting better. It wore her out, but she was so glad that she went and stayed through the whole service. Today, she went to Target for a bit. Just a few minutes of walking around wore her out, but she did make an effort. I think her body is just going to take time to heal from all that it went through. I try to tell her that those of us with a chronic illness take time to bounce back from these kinds of things. That it's a much bigger stress to our bodies than it is for healthy people.
So, all of this has got met me to thinking a bit more about stress and chronic illness. What can we do to help ourselves? One thing, something I'm not very good about, is to let others help us. Sometimes this means we need to ask for help. Is it just me, or do other chronically ill people hate to ask for help? I figure it's one of those things we struggle with because maybe we feel as if we are giving up some of our independence. In many cases, illness has already taken so much from us that we hate to let go of even more. But, I know when I have someone help me with what they may feel is the smallest thing, it help me a lot! That's energy I can save or energy that I can use for something else I'd rather do. I think having a supportive group of friends is helpful, too. I know that is hard to find, but I think those of us with chronic illnesses maybe need to redefine friendship. I know I've touched on this before, but our friends can be people we've "met" online. We can keep in touch online, through texts, phone calls, etc. One such friend, whom I "met" about ten years ago, in an online forum, and I keep in touch through Voxer. Voxing is great! Basically, it's a messaging App for your smart phone. You can leave messages for each other and then the other person can listen and get back at their convenience. It's so great for times when you aren't up to carrying on a conversation. There's no expectations that have to be met; it's all done when each individual feels up to talking and listening. Anyway, I have to say that I consider this friend to be among my closest friends, even though we've never met face to face. Something else, I think it's so important for us to have faith. Something to believe in.I know if I didn't have my religion and my church, I'd be much worse off. I'm certainly no expert on religious matters, but I do think it can make a difference in our lives. Those of us with chronic illnesses can really be helped by not only individual bible study and prayer time, but by being a part of a church group. It's a great way to make new friends and to have a support system. I realize not everyone is a believer. If that's the case for you, find some way to meditate and get in touch with your spiritual side. I believe, we all need to feel as if we are a part of something bigger.
In closing, I found this article. The author touches on some of the same things I did. Hmmm....maybe I'm on to something. Here's the link. Enjoy. http://www.ipasite.com/StressofLivingwithChronicIllness.html