Living with a chronic illness doesn’t have to be hard
A diagnosis of a chronic illness means you are sick and your illness is never going away. It is natural to feel a sense of injustice over the loss of something you thought you had control over. But living with chronic illness doesn’t have to be hard if we establish rules to make it easier.
Here are seven rules that have helped me to live well despite rheumatoid arthritis and fibromyalgia.
Rule 1: Trust Yourself to Find Answers
One of the most difficult things I dealt with in the ten plus years I was searching for answers was the possibility that all my symptoms were in my head. My being sick meant I had to trust in myself to find the right answers and not to let others deter me. There are going to be people along the way, including family, friends, and even members of the medical community, who will try to convince you that your symptoms are “all your head.” These people are ignorant and will never understand what your illness and symptoms are about. Don’t let their perceptions make you doubt yourself and your need for answers.
Read more at http://www.rheumatoidconnect.com/rheumatoid-arthritis-articles/131-7-rules-for-living-well-with-chronic-illness#y8jGQOBc2m798KOu.99
Our advocate Lana shares nine valuable lessons that have shaped her life over the last six years.
Going into my sixth year living with a chronic illness, I consider myself experienced in meeting the challenges imposed by chronic illness. The term “chronic illness” doesn’t bother me and I no longer see my illnesses as a burden. Rather, I view them as a determinant of who I can become. Further, how I choose to cope determines the lessons I gain and how those lessons shape my very existence.
Here are nine valuable lessons that have shaped my life over the last six years.
Enjoy Life Even When It Hurts
There have been many occasions where I just didn’t feel motivated to follow through on plans with friends and family. But when I forced myself to get out and push past the pain, I was glad I got to enjoy that time and to make those memories. And yes, it is true that we should take care of ourselves — and there will be plenty of plans that do get cancelled — but we shouldn’t make canceling plans the norm. If you are going to be in pain, you might as well do the things you enjoy to help you forget. Trust me, your mind, body and soul will thank you.
Read more at http://www.diabeticconnect.com/diabetes-information-articles/general/1069-9-valuable-lessons-gained-from-chronic-illness#Oy0kw4cbqtCikQ7F.99
I was in the waiting room dreading yet another appointment with my rheumatologist. It was nine months prior that I was diagnosed by my primary physician with rheumatoid arthritis (RA) and I didn’t know what my doctor-patient relationship should look like. At that third appointment with Dr. “A,” I determined it was time for me to find a new doctor to treat my RA and fibromyalgia.
The Red Flags
How did I know when the time was right to find a new doctor? Here are the seven red flags that helped to make that decision.
- My doctor did not listen to me. Often times, it felt like Dr. A was not listening to my concerns. She would interrupt me or even repeat the same questions she previously asked. Moreover, at each visit, she seemed uninformed about my health and why I was there. It was as if I was seeing a new doctor at each appointment. Moreover, she refused to change my medications despite the side effects I endured. For example, I brought to her attention that my vision had worsened since I started on Plaquenil and she refused to acknowledge that this was a side effect of the medication and insisted that I continue taking it.
- I felt that she did not believe I was sick. My doctor was a rheumatologist and she still would not attribute some of my symptoms to RA. She would suggest things like stress and hormones. Further, even though she had diagnosed my fibromyalgia, she refused to prescribe anything for it. She told me to lose weight and change my diet. I could not understand the reasoning behind her thinking and it made me skeptical to share with her how I was feeling. Under her care, I was not getting better; I was getting worse.
Read more at http://www.fibromyalgiaconnect.com/fibromyalgia-articles/318-7-signs-it-was-time-to-find-a-new-doctor#J2tXu07TlcwquwlX.99
Communication and changing habits are keys to bolstering intimacy.
Sex is a hot topic and it is also a taboo topic. Whether you are talking freely among friends or for educational purpose, there will be controversy. As it pertains to arthritis, many of you have found yourselves wondering whether arthritis and sex can even go together, but it is not a topic you want to be open about. In general, people do not want to discuss what goes on behind closed doors. Even couples in meaningful relationships can relate to this as they hide their feelings from one another.
What is Intimacy?
What does intimacy requires and include? Ideally, it includes love. It can also include romance. Two additional critical components are mood and setting. Last, intimacy includes the act, with positions and physical attributes. In addition to the requirements of intimacy, we can also look to why intimacy fails and why breakups and failed relationships occur. In looking at the reasons for failure, we find challenges to successful relationships and that once successful relationships can fail. Moreover, when we consider the reasons for failure, we often forget that in addition to emotional factors, physical factors can play a part in the success or failure of a relationship. Emotional factors are a given, as are intimacy issues. Physical factors can include arthritis and chronic pain conditions.
Intimacy and Arthritis
The problems faced by arthritis sufferers are both emotional and physical. Emotional factors include self-doubt and poor body image. Physical factors include joint pain and other symptoms that are characteristic of a person’s specific arthritis condition. These concerns not only affect the patient, but they also affect that person’s partner as well. Barriers include physical pain, the inability to perform because of joint pain or other symptoms, expectations and personal needs — both sexual and emotional. This complete consensus can have strong complications in a relationship.
Read more at http://www.arthritisconnect.com/arthritis-articles/259-overcoming-arthritis-in-the-bedroom#QeUxu8F02hTwLzg2.99
Learn how to keep a schedule and get things done despite chronic pain.
Being productive is important for people with chronic illness because it is an opportunity to focus on anything but their illnesses. However, schedules and goals can be difficult to accomplish when you are constantly dealing with symptoms. But just because it may be challenging to be productive with illness doesn’t mean we shouldn’t try.
Here are five ways that help me to remain productive with chronic illness.
1. I maintain a daily schedule.
Being chronically ill can be unpredictable. I never know whether tomorrow or next week or even an hour from now I will be able to do what I planned. As soon as my symptoms attack, my schedule can change. But just because a daily schedule may not always fit into my life, it doesn’t mean that I shouldn’t have a schedule. In fact, maintaining a daily routine for my work, errands, household chores, and hobbies provides feelings of stability despite the chaos and uncertainty illness often brings.
Read more at http://www.chronicpainconnect.com/chronic-pain-articles/310-5-ways-to-be-productive-with-chronic-illness#EMcWQ59lHxEY3zWf.97
What has been your diagnosis journey? Our patient advocate Lana describes hers.
If you were reading a book or watching a movie about a person with a disease, the main character’s chronic illness would have some dramatic beginning: a fall, an accident, a lump, or a call from the doctor about a test result. But in real life, chronic illness doesn’t always work that way. In fact, most of us got sick gradually and then suddenly. We usually can’t pinpoint an event in our lives when the onset of symptoms started.
When I tell my story, I tell people I have been sick for a long time—long before any doctor diagnosed me. I identify the start of my symptoms by looking back at my mid-20s when I had to overcome some of the most stressful events of my life. Shortly after, I developed debilitating fatigue and always felt like I was coming down with the flu. I look back at the years that followed, when I endured muscle and joint pain, headaches, and unrelenting chronic fatigue.
When no medical tests gave answers, I was given medication for anxiety and depression. At some point, my doctors made me believe that my symptoms were all in my head. And another benchmark came in 2006 when my gallbladder stopped functioning.
Read more at http://www.fibromyalgiaconnect.com/fibromyalgia-articles/468-what-s-wrong-with-me?category=treatment
Learning to stay hopeful as you experience frustration and exhaustion from living with rheumatoid arthritis.
Living with a chronic illness, such as fibromyalgia, arthritis or lupus, can be very frustrating. There is no one size fits all solution. Even when patients are following doctor’s orders, they can still struggle to manage their disease symptoms. And when treatments aren’t working, patients are left to wonder if they should just give up.
At the End of Your Rope
I suspect that many of you have reached a point where it feels as if you are tired, frustrated and at the end of your rope because the things you are doing to feel better just aren’t enough. Here is a typical comment I hear:
“I am in my 30s (or 40s or 50s), overweight, and living with depression, anxiety and worsening chronic illness symptoms despite proper diet, exercise and medication. I have tried everything under the sun to get my symptoms under control but I have had no luck. I am tired of not seeing results, getting my hopes up and going to all of the doctor’s appointments. What do you do when you feel like you have done it all to no avail?”
Like so many, I have left no stone unturned in moving towards a somewhat normal life where chronic illness does not dictate my actions. There have been times where I, too, have wanted to give up trying to figure out how to get well. And there have been times where I have flat out given up—for a little while, at least.
Read more at http://www.rheumatoidconnect.com/rheumatoid-arthritis-articles/178-when-it-feels-like-you-have-done-it-all#bg2zkPGB3YHzsYs2.99