Hello everybody, my name is Maggie O’Brien, and I am a blogger at “Frequently Fibro”, which is mainly about fibromyalgia and coping with chronic illness. I was “functioning “sick for some time, but now I am completely unable to work. However, I was able to maintain a full-time job as a police officer, an army reservist, and complete my bachelor’s degree. I am married and have a son and two step sons. A year ago, after working a midnight shift I had a TIA and have remained in a permanent “flare”. I haven’t been back to work and have been trying to learn how to self care and manage my disease and activities to the best of my ability.
I was first diagnosed with fibromyalgia, after some confusion with the possibility of Lupus involvement about two years ago. At first, I did not believe in Fibromyalgia and rejected this. I had previously been told that I had Epstein Barr Virus and Chronic Fatigue Syndrome. I did have mononucleosis in my teens and just attributed those findings with that. I knew something was wrong, incredible fatigue and joint pain. I felt like I had a horrible achy flu all the time. I would work hard and rest the best I could. I did get to the point of not being able to sleep, which I also attributed to shift work.
I sought help after struggling to cope with my life and dealing with the medical issues and stress from my employer in regard to my repetitive absences. I was diagnosed with adjustment disorder and anxiety. I was not transitioning my active lifestyle to meet the terms of my illness. I missed my life before illness. I missed laughing and being able to function.
It may seem silly and trite to some. I hear the same things from so many well intentioned people who may be only trying to help, such as, just exercise, eat healthy, lose weight, be more positive, blah blah blah etc.
I am certain you may all understand all too well. While, all of this good intended advice and may be true
to some point, but terribly hard to do when you are ill. The hardest thing is that people don’t see how ill you are and judge you by appearance alone. They don’t see how difficult life is when you’re fighting a chronic illness. So, I am learning to stop worrying about how I may be judged.
It’s so hard to understand and explain to people that you have trouble showering and it makes you horribly sick for a day afterwards. Shout out to those who can relate! That shopping for groceries is comparable to a marathon. Often, by the time I make it home with my purchases I am utterly exhausted with no energy to unload them. Or that the occasional time I can do something social, like go for dinner, visit friends, or a kayak; I will need to recover for a week.
I have a few coping skills that have assisted me greatly. Simply, some tricks to make my day easier. Some of these tricks have been with assistance of my occupational therapist, my psychologist, and from my own research and experience.
First, of all don’t depend on your physician for everything, but do create a good relationship with your medical team. You’re going to hear a lot about being your own advocate, do your own research, know your medications, and believe in yourself and your illness. Don’t doubt what you have been dealing with or your pain and its effects on you. Once, while I was at my Pain Care Clinic with my amazingly supportive physician. She was doing my weekly pain injections (nerve blocks) and in my hip muscle when she had trouble with the needle and showed me that it had bent to a 90 degree angle. She said something to me that I will never forget about never letting anyone call you crazy because your hurting as the muscle was so seized up it bent the needle. That simple little statement helps me keep my pride. “it’s not me, it’s my illness”. The care I get from my Pain Care Clinic helps me to function and they monitor me well. This leads me to my next point, which is to have a good treatment plan. This plan will spell out what to do when you encounter a flare and have uncontrollable pain. For example, my physician has established a set of shots for very bad days that help me rest and alleviate my pain. I believe it includes Prednisone, Benadryl, and Ketorolac. It gives me a piece of mind having a plan.
Now, the biggest secret in my coping bag of tricks would involve keeping my stress level very low. When I am subjected to any stress it makes me literally flare up and get worse. My recovery time is much longer when I am stressed out. I know easy to say hard to do, right, but seriously, it helps. In coming to terms with the loss of my career, I have now accepted the little things that not working brings to me, such as, the ability to rest when I need, there is no longer the struggle to work when sick and exhausted. Now, if I am too ill to function I can let my body rest. So, I am listening to my body to the best of my ability and trying to not overdue any tasks or activities. Lastly, I have learned to accept the use of mobility aids as I need them depending on the day, whether it may be my crutches or walker. This way I don’t fall, and I can save my energy, and keep my pain level down.
Now, the hardest step I took involved me bringing my illness into the open, this allowed me to stop hiding my struggle with the pain and sickness. In doing this, I was able to start making my health a priority. Stop hiding the fibromyalgia and chronic pain and pushing myself. This has helped lower my anxiety somewhat. Also, learning from others about fibromyalgia and what others go through does help me greatly as it brings me comfort. In short, I am not alone and in turn you and anyone else reading this and struggling are not alone.
In closing, I hope that if your not already talking with someone don’t be afraid to set up an appointment and reach out. Everyday there will be concerns with your chronic illness, pain and other variables, but we can control our ability to accept help and support. Many people seek out the love and support of a pet to comfort them. My dogs keep me company when my family are out and they warm my heart.
Feel free to reach out to my disordered life on my blog frequentlyfibro.com my disordered life….